Heather Florescue, MD

As a provider whose passion is helping women after stillbirth or neonatal loss, I get many transfers of women from their previous practice after a loss. Sometimes they transfer because they need a “fresh start,” but often, it is because they were let down by the practice – not by the medical care they received but by the emotional care and support and what was said or not said after the loss of the baby. A 2014 meta-analysis in the British Journal of Obstetrics and Gynaecology found that “Parents regarded contacts with health professionals as their central source of reassurance; but experiences often fell short of expectations.”¹ I decided to conduct a survey via local and national support groups about what “loss parents” felt helpful or not helpful after the loss of a child. I purposely made these quotes the dominant part of this article, as I believe our patients are often our best teachers.

Inappropriate comments providers make

A very common theme among loss parents was how providers had made comments about how rare stillbirth is after it had just happened to them. Parents expressed that they felt this statistic kept them from getting the care that they needed prior to their loss and then they were told to not worry. Some example quotes include:

“ ‘This only happens to 1% of babies. Very rare.’ (It happened to our baby, and we have to live with this grief our whole lives. She is more than a statistic. She was our hopes, dreams, and future.)”

“I wish doctors didn’t wait to act based on statistics. There’s a lot of us in the 1% of unlikely occurrences.”

“For me, when my practice brushed off my feelings, I knew in my gut something was wrong. They said, ‘We need to wean you from worrying.’”

Another very common theme from parents included examples of helpful and not helpful care they received in the hospital.
 

Help parents make good memories

Many parents mentioned the importance of providing resources for after they go home. Most labor and delivery units have pregnancy loss services and have improved on the care they provide for loss families. One very common positive comment responded to the memories that nurses and providers helped them make after delivery. One parent said the following:

“While with baby and after loss, I think it’s really important to give ideas of what to do/experiences because the moments are so fleeting, and I needed someone to say, ‘You can dress him.’ ‘Let’s take pictures of his toes.’ ‘Save breast milk, etc.’”

“I appreciated the doctors and nurses who acknowledged my child, who looked at him and humanized him. One nurse even held him, which I still love her to this day for.”

“Explain things over, over, and over again, like you are explaining it to a child. I didn’t know what a cuddle cot was, and I didn’t use it because I didn’t understand.”

“Give suggestions and stress the importance of making memories. There are things I wish I did and now regret not doing. Taking pictures, handprints, lock of hair, giving the baby a bath.”

“For unknown losses give a full explanation of the autopsy and what it entails. Parents are making SO many decisions, and they need guidance.”

“Don’t shy away from it. It happened, and it is important to be human and compassionate. If you cannot do it, find someone else who can.”

“Ask to hold the baby and comment how beautiful the baby is. Treat the baby as if it were living.”

Don’t use the ‘silver lining’ theme

A common “don’t” in the hospital and postpartum is the “at least” and “silver lining” theme that is commonly expressed by providers. When I do my teaching sessions with a bereaved parents panel, we always stress that comforting words never begin with “at least.” We say a lot that there is no “silver lining” to a stillbirth. Dr. Brene Brown, in her TED talk on empathy, discussed that an empathic statement never starts with “at least.” However, this response is an all too common experience for women after stillbirth. Here are some examples from the Internet responses:

“‘The silver lining is you and your daughter have taught us so much.’ There is no silver lining, and her life was not for anyone’s easy path to learning lessons. She was wanted and loved.”

“What not to say: From a doctor, ‘You’re going to have lots more children.’ Anything along the lines of ‘at least you can get pregnant/have children’ is not OK.”

“As a teacher, ‘At least you are already a mother to your students.’ (I cannot even tell you how many times I’ve been told this. They already have mothers, and teaching a child 40 minutes once a week is not even close to being a mother to your own child.)”

“I felt it unhelpful for people to tell me how I should feel. I felt comments like ‘oh, you are young you can have another baby’ unhelpful.”

“Do not say, ‘you can have another, it wasn’t God’s plan, God wanted another angel, there is a reason for everything,’ etc.”

“The doctor who told me my baby was dead referred to him as a fetus. I was 38 weeks pregnant and did not refer to my baby as a fetus.”
 

Handling patient care after the loss

A huge portion of the response I received was regarding care from the practice where they delivered after the loss. These parents provided very important advice for any practice after a patient experiences a loss. Emotional support is vital for these patients. They also made it clear that topics such a medications and counseling should be frequently revisited.

“The care a patient receives after can really change their life – not physical care but emotional care. I truly believe I recovered well, and I am the person I am today because of my provider’s phone calls, suggestions for medications, support groups, and counseling. Don’t underestimate what simple phone calls can do. You don’t have to provide a solution or give advice, just listen.”

“Revisit conversations about medications. I have never taken anything in my entire life. In fact, I was very against it. Don’t be afraid to suggest medications time and time again if you think that it is the right plan. After 6 months, I said ‘yes’ to the medication, and it helped immensely.”

“My OB checking in with me constantly. Doctors offering compassionate and informative advice and encouragement. SUPPORT GROUPS. Star Legacy Foundation mentor!!! Klonopin! Psychologist!!”

“Also, I think it’s important for providers to continue to follow-up with patients even if they don’t seem receptive. Keep checking in. After losing your child you are in a fog. You don’t know quite what you need. But those calls, I promise you they mean something.”
 

When the patient returns to the office

The care received by a loss parent after returning to the office is challenging but so important. Some very careful steps can and must be made to help avoid emotionally harmful situations for the staff and patients. Offices need to make special accommodations and mark what happened clearly in the chart regarding the loss. When I have a mother coming in for a postpartum visit after a loss, I make sure she is the last patient of the day and try to bring her to our satellite offices where she can be the only patient there. Many parents made comments about carefully labeling what happened to the baby in the chart.

“Make sure it’s noted in the chart, and don’t AVOID talking about it. We like to have our baby brought up. Make sure staff knows the situation before entering the office so they don’t say something stupid (for example, ‘How is breast feeding going?’)”

“#1 don’t in my book: Not reading the patient’s chart and labels on it before seeing them if you’re not familiar with the patient. ... Nurses, techs and providers alike have assumed or asked “this is your first,” when clearly my chart lists “fetal death in utero.’”

“Many others have stated this, but having a BIG HUGE MASSIVE flag on our accounts and making sure ALL parts of the office are trained on this would be so incredibly helpful.”

“The nurse at my doctor’s office yesterday said, ‘Well, you’ve lost some weight since you were here last, so that’s good!’ My response was, ‘Well, losing a baby will do that.’”

“The follow-up appointment is awful. I went in heartbroken and angry and anxious. A phone call the day before acknowledging those feelings and reassuring me it was okay would have been nice.”

“At my first follow-up after my son died, I walked in, the receptionist pulled up my chart, saw I was there for my post-delivery appointment, and in the loudest, most cheery voice said, ‘Oooooooooh how’s he doing, how’s the baby?!’ It was awful telling her that he died, and I also felt terrible for all the pregnant woman in the waiting room who may have heard it.”

“When I was in emergency for a complication after birth, the only condolence a doctor from our previous practice gave was, ‘Well, that sucks’ (in regard to our daughter).”
 

Continuing care in the office

The care of women in the office immediately after loss and in years to come is a very important piece of the care they receive. In the same BJOG meta-analysis they found, “Parents frequently encountered professionals who were unaware of their history, through lack of access to/or reading of notes before a consultation. Dismissive attitudes to fears and concerns and insensitive and inappropriate comments sometimes resulted. These often remained with parents long after the event. In contrast, emotional wellbeing was enhanced when care providers demonstrated empathy, listened to concerns and committed to a collaborative and supportive relationship. Parents valued direct acknowledgment of the baby who had died, including using his or her name. Flexible antenatal care including extra appointments, routinely or on request, was also welcomed.”1 These findings were very similar to those reflected in the comments that I received.

“To the mother, there is no difference between a living baby and a stillborn baby. This stillborn baby is JUST AS MUCH a life to us. I’ve had four kids, and I can’t differentiate between how I feel about them.”

“Also, if staying with the same provider, ‘do’ ask what accommodations can be made moving forward. (For me I needed a different ultrasound tech and a different office for my ultrasounds in my subsequent pregnancies as I couldn’t go back there but wanted to stay with my same OB).”

“Don’t be afraid to ask about the child. I want people to know I like talking about my son, that he existed and how much love there was in his short but meaningful life.”

“Saying nothing is worse than saying you don’t know what to say and you are sorry.”

“Some moms love the rainbow baby term, and if they use it first, it’s fine to use it and encourage it and promote it. However, some moms do not like it because 1) they don’t like referring to their loss baby as a ‘storm.’ My baby was a BABY, and he was perfect and loved and I don’t like people referring to him as a storm. A storm is derogatory, [and] 2) the notion the subsequent baby makes everything okay is ridiculous. 3) Not everyone has another baby after a loss, so the ‘after every storm comes a rainbow’ phrase is stupid. It makes it seem like you can never be happy again unless you get a rainbow, and that is not true. 4) It’s a signal to the outside world that ‘everything’ is great and ok when in reality you can have grief, joy, sadness, happiness, pain, and hope all at the [same] time forever.”

Patients and their families who have lost their babies deserve our very best. No one grieves the same, and the differences in how our patients grieve must be respected. However, members of the loss community do have some common themes on responses that they appreciated or did not appreciate regarding their care. Most patients who deliver a stillborn baby or experience a neonatal death or pre-viable baby have had no time to prepare, and they are looking for our guidance and support. The more time we spend with them after diagnosis, during delivery, and after will be so appreciated. I hope some of these quotes ring true to many providers and that they either lead to attempts to change care or reinforce the amazing care providers are already providing. Being at our best when our patients are experiencing potentially the worst moments of their lives is our job as obstetrical providers. Our patients deserve the best care we can possibly provide. Hopefully, these suggestions from patients will help the care of future loss families.
 

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures. Email her at obnews@mdedge.com.

Reference

1. BJOG. 2014 Jul; 121(8):943-50. doi: 10.1111/1471-0528.12656.

As a provider whose passion is helping women after stillbirth or neonatal loss, I get many transfers of women from their previous practice after a loss. Sometimes they transfer because they need a “fresh start,” but often, it is because they were let down by the practice – not by the medical care they received but by the emotional care and support and what was said or not said after the loss of the baby. A 2014 meta-analysis in the British Journal of Obstetrics and Gynaecology found that “Parents regarded contacts with health professionals as their central source of reassurance; but experiences often fell short of expectations.”¹ I decided to conduct a survey via local and national support groups about what “loss parents” felt helpful or not helpful after the loss of a child. I purposely made these quotes the dominant part of this article, as I believe our patients are often our best teachers.

Inappropriate comments providers make

A very common theme among loss parents was how providers had made comments about how rare stillbirth is after it had just happened to them. Parents expressed that they felt this statistic kept them from getting the care that they needed prior to their loss and then they were told to not worry. Some example quotes include:

“ ‘This only happens to 1% of babies. Very rare.’ (It happened to our baby, and we have to live with this grief our whole lives. She is more than a statistic. She was our hopes, dreams, and future.)”

“I wish doctors didn’t wait to act based on statistics. There’s a lot of us in the 1% of unlikely occurrences.”

“For me, when my practice brushed off my feelings, I knew in my gut something was wrong. They said, ‘We need to wean you from worrying.’”

Another very common theme from parents included examples of helpful and not helpful care they received in the hospital.
 

Help parents make good memories

Many parents mentioned the importance of providing resources for after they go home. Most labor and delivery units have pregnancy loss services and have improved on the care they provide for loss families. One very common positive comment responded to the memories that nurses and providers helped them make after delivery. One parent said the following:

“While with baby and after loss, I think it’s really important to give ideas of what to do/experiences because the moments are so fleeting, and I needed someone to say, ‘You can dress him.’ ‘Let’s take pictures of his toes.’ ‘Save breast milk, etc.’”

“I appreciated the doctors and nurses who acknowledged my child, who looked at him and humanized him. One nurse even held him, which I still love her to this day for.”

“Explain things over, over, and over again, like you are explaining it to a child. I didn’t know what a cuddle cot was, and I didn’t use it because I didn’t understand.”

“Give suggestions and stress the importance of making memories. There are things I wish I did and now regret not doing. Taking pictures, handprints, lock of hair, giving the baby a bath.”

“For unknown losses give a full explanation of the autopsy and what it entails. Parents are making SO many decisions, and they need guidance.”

“Don’t shy away from it. It happened, and it is important to be human and compassionate. If you cannot do it, find someone else who can.”

“Ask to hold the baby and comment how beautiful the baby is. Treat the baby as if it were living.”

Don’t use the ‘silver lining’ theme

A common “don’t” in the hospital and postpartum is the “at least” and “silver lining” theme that is commonly expressed by providers. When I do my teaching sessions with a bereaved parents panel, we always stress that comforting words never begin with “at least.” We say a lot that there is no “silver lining” to a stillbirth. Dr. Brene Brown, in her TED talk on empathy, discussed that an empathic statement never starts with “at least.” However, this response is an all too common experience for women after stillbirth. Here are some examples from the Internet responses:

“‘The silver lining is you and your daughter have taught us so much.’ There is no silver lining, and her life was not for anyone’s easy path to learning lessons. She was wanted and loved.”

“What not to say: From a doctor, ‘You’re going to have lots more children.’ Anything along the lines of ‘at least you can get pregnant/have children’ is not OK.”

“As a teacher, ‘At least you are already a mother to your students.’ (I cannot even tell you how many times I’ve been told this. They already have mothers, and teaching a child 40 minutes once a week is not even close to being a mother to your own child.)”

“I felt it unhelpful for people to tell me how I should feel. I felt comments like ‘oh, you are young you can have another baby’ unhelpful.”

“Do not say, ‘you can have another, it wasn’t God’s plan, God wanted another angel, there is a reason for everything,’ etc.”

“The doctor who told me my baby was dead referred to him as a fetus. I was 38 weeks pregnant and did not refer to my baby as a fetus.”
 

Handling patient care after the loss

A huge portion of the response I received was regarding care from the practice where they delivered after the loss. These parents provided very important advice for any practice after a patient experiences a loss. Emotional support is vital for these patients. They also made it clear that topics such a medications and counseling should be frequently revisited.

“The care a patient receives after can really change their life – not physical care but emotional care. I truly believe I recovered well, and I am the person I am today because of my provider’s phone calls, suggestions for medications, support groups, and counseling. Don’t underestimate what simple phone calls can do. You don’t have to provide a solution or give advice, just listen.”

“Revisit conversations about medications. I have never taken anything in my entire life. In fact, I was very against it. Don’t be afraid to suggest medications time and time again if you think that it is the right plan. After 6 months, I said ‘yes’ to the medication, and it helped immensely.”

“My OB checking in with me constantly. Doctors offering compassionate and informative advice and encouragement. SUPPORT GROUPS. Star Legacy Foundation mentor!!! Klonopin! Psychologist!!”

“Also, I think it’s important for providers to continue to follow-up with patients even if they don’t seem receptive. Keep checking in. After losing your child you are in a fog. You don’t know quite what you need. But those calls, I promise you they mean something.”
 

When the patient returns to the office

The care received by a loss parent after returning to the office is challenging but so important. Some very careful steps can and must be made to help avoid emotionally harmful situations for the staff and patients. Offices need to make special accommodations and mark what happened clearly in the chart regarding the loss. When I have a mother coming in for a postpartum visit after a loss, I make sure she is the last patient of the day and try to bring her to our satellite offices where she can be the only patient there. Many parents made comments about carefully labeling what happened to the baby in the chart.

“Make sure it’s noted in the chart, and don’t AVOID talking about it. We like to have our baby brought up. Make sure staff knows the situation before entering the office so they don’t say something stupid (for example, ‘How is breast feeding going?’)”

“#1 don’t in my book: Not reading the patient’s chart and labels on it before seeing them if you’re not familiar with the patient. ... Nurses, techs and providers alike have assumed or asked “this is your first,” when clearly my chart lists “fetal death in utero.’”

“Many others have stated this, but having a BIG HUGE MASSIVE flag on our accounts and making sure ALL parts of the office are trained on this would be so incredibly helpful.”

“The nurse at my doctor’s office yesterday said, ‘Well, you’ve lost some weight since you were here last, so that’s good!’ My response was, ‘Well, losing a baby will do that.’”

“The follow-up appointment is awful. I went in heartbroken and angry and anxious. A phone call the day before acknowledging those feelings and reassuring me it was okay would have been nice.”

“At my first follow-up after my son died, I walked in, the receptionist pulled up my chart, saw I was there for my post-delivery appointment, and in the loudest, most cheery voice said, ‘Oooooooooh how’s he doing, how’s the baby?!’ It was awful telling her that he died, and I also felt terrible for all the pregnant woman in the waiting room who may have heard it.”

“When I was in emergency for a complication after birth, the only condolence a doctor from our previous practice gave was, ‘Well, that sucks’ (in regard to our daughter).”
 

Continuing care in the office

The care of women in the office immediately after loss and in years to come is a very important piece of the care they receive. In the same BJOG meta-analysis they found, “Parents frequently encountered professionals who were unaware of their history, through lack of access to/or reading of notes before a consultation. Dismissive attitudes to fears and concerns and insensitive and inappropriate comments sometimes resulted. These often remained with parents long after the event. In contrast, emotional wellbeing was enhanced when care providers demonstrated empathy, listened to concerns and committed to a collaborative and supportive relationship. Parents valued direct acknowledgment of the baby who had died, including using his or her name. Flexible antenatal care including extra appointments, routinely or on request, was also welcomed.”1 These findings were very similar to those reflected in the comments that I received.

“To the mother, there is no difference between a living baby and a stillborn baby. This stillborn baby is JUST AS MUCH a life to us. I’ve had four kids, and I can’t differentiate between how I feel about them.”

“Also, if staying with the same provider, ‘do’ ask what accommodations can be made moving forward. (For me I needed a different ultrasound tech and a different office for my ultrasounds in my subsequent pregnancies as I couldn’t go back there but wanted to stay with my same OB).”

“Don’t be afraid to ask about the child. I want people to know I like talking about my son, that he existed and how much love there was in his short but meaningful life.”

“Saying nothing is worse than saying you don’t know what to say and you are sorry.”

“Some moms love the rainbow baby term, and if they use it first, it’s fine to use it and encourage it and promote it. However, some moms do not like it because 1) they don’t like referring to their loss baby as a ‘storm.’ My baby was a BABY, and he was perfect and loved and I don’t like people referring to him as a storm. A storm is derogatory, [and] 2) the notion the subsequent baby makes everything okay is ridiculous. 3) Not everyone has another baby after a loss, so the ‘after every storm comes a rainbow’ phrase is stupid. It makes it seem like you can never be happy again unless you get a rainbow, and that is not true. 4) It’s a signal to the outside world that ‘everything’ is great and ok when in reality you can have grief, joy, sadness, happiness, pain, and hope all at the [same] time forever.”

Patients and their families who have lost their babies deserve our very best. No one grieves the same, and the differences in how our patients grieve must be respected. However, members of the loss community do have some common themes on responses that they appreciated or did not appreciate regarding their care. Most patients who deliver a stillborn baby or experience a neonatal death or pre-viable baby have had no time to prepare, and they are looking for our guidance and support. The more time we spend with them after diagnosis, during delivery, and after will be so appreciated. I hope some of these quotes ring true to many providers and that they either lead to attempts to change care or reinforce the amazing care providers are already providing. Being at our best when our patients are experiencing potentially the worst moments of their lives is our job as obstetrical providers. Our patients deserve the best care we can possibly provide. Hopefully, these suggestions from patients will help the care of future loss families.
 

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures. Email her at obnews@mdedge.com.

Reference

1. BJOG. 2014 Jul; 121(8):943-50. doi: 10.1111/1471-0528.12656.

As a provider whose passion is helping women after stillbirth or neonatal loss, I get many transfers of women from their previous practice after a loss. Sometimes they transfer because they need a “fresh start,” but often, it is because they were let down by the practice – not by the medical care they received but by the emotional care and support and what was said or not said after the loss of the baby. A 2014 meta-analysis in the British Journal of Obstetrics and Gynaecology found that “Parents regarded contacts with health professionals as their central source of reassurance; but experiences often fell short of expectations.”¹ I decided to conduct a survey via local and national support groups about what “loss parents” felt helpful or not helpful after the loss of a child. I purposely made these quotes the dominant part of this article, as I believe our patients are often our best teachers.

Inappropriate comments providers make

A very common theme among loss parents was how providers had made comments about how rare stillbirth is after it had just happened to them. Parents expressed that they felt this statistic kept them from getting the care that they needed prior to their loss and then they were told to not worry. Some example quotes include:

“ ‘This only happens to 1% of babies. Very rare.’ (It happened to our baby, and we have to live with this grief our whole lives. She is more than a statistic. She was our hopes, dreams, and future.)”

“I wish doctors didn’t wait to act based on statistics. There’s a lot of us in the 1% of unlikely occurrences.”

“For me, when my practice brushed off my feelings, I knew in my gut something was wrong. They said, ‘We need to wean you from worrying.’”

Another very common theme from parents included examples of helpful and not helpful care they received in the hospital.
 

Help parents make good memories

Many parents mentioned the importance of providing resources for after they go home. Most labor and delivery units have pregnancy loss services and have improved on the care they provide for loss families. One very common positive comment responded to the memories that nurses and providers helped them make after delivery. One parent said the following:

“While with baby and after loss, I think it’s really important to give ideas of what to do/experiences because the moments are so fleeting, and I needed someone to say, ‘You can dress him.’ ‘Let’s take pictures of his toes.’ ‘Save breast milk, etc.’”

“I appreciated the doctors and nurses who acknowledged my child, who looked at him and humanized him. One nurse even held him, which I still love her to this day for.”

“Explain things over, over, and over again, like you are explaining it to a child. I didn’t know what a cuddle cot was, and I didn’t use it because I didn’t understand.”

“Give suggestions and stress the importance of making memories. There are things I wish I did and now regret not doing. Taking pictures, handprints, lock of hair, giving the baby a bath.”

“For unknown losses give a full explanation of the autopsy and what it entails. Parents are making SO many decisions, and they need guidance.”

“Don’t shy away from it. It happened, and it is important to be human and compassionate. If you cannot do it, find someone else who can.”

“Ask to hold the baby and comment how beautiful the baby is. Treat the baby as if it were living.”

Don’t use the ‘silver lining’ theme

A common “don’t” in the hospital and postpartum is the “at least” and “silver lining” theme that is commonly expressed by providers. When I do my teaching sessions with a bereaved parents panel, we always stress that comforting words never begin with “at least.” We say a lot that there is no “silver lining” to a stillbirth. Dr. Brene Brown, in her TED talk on empathy, discussed that an empathic statement never starts with “at least.” However, this response is an all too common experience for women after stillbirth. Here are some examples from the Internet responses:

“‘The silver lining is you and your daughter have taught us so much.’ There is no silver lining, and her life was not for anyone’s easy path to learning lessons. She was wanted and loved.”

“What not to say: From a doctor, ‘You’re going to have lots more children.’ Anything along the lines of ‘at least you can get pregnant/have children’ is not OK.”

“As a teacher, ‘At least you are already a mother to your students.’ (I cannot even tell you how many times I’ve been told this. They already have mothers, and teaching a child 40 minutes once a week is not even close to being a mother to your own child.)”

“I felt it unhelpful for people to tell me how I should feel. I felt comments like ‘oh, you are young you can have another baby’ unhelpful.”

“Do not say, ‘you can have another, it wasn’t God’s plan, God wanted another angel, there is a reason for everything,’ etc.”

“The doctor who told me my baby was dead referred to him as a fetus. I was 38 weeks pregnant and did not refer to my baby as a fetus.”
 

Handling patient care after the loss

A huge portion of the response I received was regarding care from the practice where they delivered after the loss. These parents provided very important advice for any practice after a patient experiences a loss. Emotional support is vital for these patients. They also made it clear that topics such a medications and counseling should be frequently revisited.

“The care a patient receives after can really change their life – not physical care but emotional care. I truly believe I recovered well, and I am the person I am today because of my provider’s phone calls, suggestions for medications, support groups, and counseling. Don’t underestimate what simple phone calls can do. You don’t have to provide a solution or give advice, just listen.”

“Revisit conversations about medications. I have never taken anything in my entire life. In fact, I was very against it. Don’t be afraid to suggest medications time and time again if you think that it is the right plan. After 6 months, I said ‘yes’ to the medication, and it helped immensely.”

“My OB checking in with me constantly. Doctors offering compassionate and informative advice and encouragement. SUPPORT GROUPS. Star Legacy Foundation mentor!!! Klonopin! Psychologist!!”

“Also, I think it’s important for providers to continue to follow-up with patients even if they don’t seem receptive. Keep checking in. After losing your child you are in a fog. You don’t know quite what you need. But those calls, I promise you they mean something.”
 

When the patient returns to the office

The care received by a loss parent after returning to the office is challenging but so important. Some very careful steps can and must be made to help avoid emotionally harmful situations for the staff and patients. Offices need to make special accommodations and mark what happened clearly in the chart regarding the loss. When I have a mother coming in for a postpartum visit after a loss, I make sure she is the last patient of the day and try to bring her to our satellite offices where she can be the only patient there. Many parents made comments about carefully labeling what happened to the baby in the chart.

“Make sure it’s noted in the chart, and don’t AVOID talking about it. We like to have our baby brought up. Make sure staff knows the situation before entering the office so they don’t say something stupid (for example, ‘How is breast feeding going?’)”

“#1 don’t in my book: Not reading the patient’s chart and labels on it before seeing them if you’re not familiar with the patient. ... Nurses, techs and providers alike have assumed or asked “this is your first,” when clearly my chart lists “fetal death in utero.’”

“Many others have stated this, but having a BIG HUGE MASSIVE flag on our accounts and making sure ALL parts of the office are trained on this would be so incredibly helpful.”

“The nurse at my doctor’s office yesterday said, ‘Well, you’ve lost some weight since you were here last, so that’s good!’ My response was, ‘Well, losing a baby will do that.’”

“The follow-up appointment is awful. I went in heartbroken and angry and anxious. A phone call the day before acknowledging those feelings and reassuring me it was okay would have been nice.”

“At my first follow-up after my son died, I walked in, the receptionist pulled up my chart, saw I was there for my post-delivery appointment, and in the loudest, most cheery voice said, ‘Oooooooooh how’s he doing, how’s the baby?!’ It was awful telling her that he died, and I also felt terrible for all the pregnant woman in the waiting room who may have heard it.”

“When I was in emergency for a complication after birth, the only condolence a doctor from our previous practice gave was, ‘Well, that sucks’ (in regard to our daughter).”
 

Continuing care in the office

The care of women in the office immediately after loss and in years to come is a very important piece of the care they receive. In the same BJOG meta-analysis they found, “Parents frequently encountered professionals who were unaware of their history, through lack of access to/or reading of notes before a consultation. Dismissive attitudes to fears and concerns and insensitive and inappropriate comments sometimes resulted. These often remained with parents long after the event. In contrast, emotional wellbeing was enhanced when care providers demonstrated empathy, listened to concerns and committed to a collaborative and supportive relationship. Parents valued direct acknowledgment of the baby who had died, including using his or her name. Flexible antenatal care including extra appointments, routinely or on request, was also welcomed.”1 These findings were very similar to those reflected in the comments that I received.

“To the mother, there is no difference between a living baby and a stillborn baby. This stillborn baby is JUST AS MUCH a life to us. I’ve had four kids, and I can’t differentiate between how I feel about them.”

“Also, if staying with the same provider, ‘do’ ask what accommodations can be made moving forward. (For me I needed a different ultrasound tech and a different office for my ultrasounds in my subsequent pregnancies as I couldn’t go back there but wanted to stay with my same OB).”

“Don’t be afraid to ask about the child. I want people to know I like talking about my son, that he existed and how much love there was in his short but meaningful life.”

“Saying nothing is worse than saying you don’t know what to say and you are sorry.”

“Some moms love the rainbow baby term, and if they use it first, it’s fine to use it and encourage it and promote it. However, some moms do not like it because 1) they don’t like referring to their loss baby as a ‘storm.’ My baby was a BABY, and he was perfect and loved and I don’t like people referring to him as a storm. A storm is derogatory, [and] 2) the notion the subsequent baby makes everything okay is ridiculous. 3) Not everyone has another baby after a loss, so the ‘after every storm comes a rainbow’ phrase is stupid. It makes it seem like you can never be happy again unless you get a rainbow, and that is not true. 4) It’s a signal to the outside world that ‘everything’ is great and ok when in reality you can have grief, joy, sadness, happiness, pain, and hope all at the [same] time forever.”

Patients and their families who have lost their babies deserve our very best. No one grieves the same, and the differences in how our patients grieve must be respected. However, members of the loss community do have some common themes on responses that they appreciated or did not appreciate regarding their care. Most patients who deliver a stillborn baby or experience a neonatal death or pre-viable baby have had no time to prepare, and they are looking for our guidance and support. The more time we spend with them after diagnosis, during delivery, and after will be so appreciated. I hope some of these quotes ring true to many providers and that they either lead to attempts to change care or reinforce the amazing care providers are already providing. Being at our best when our patients are experiencing potentially the worst moments of their lives is our job as obstetrical providers. Our patients deserve the best care we can possibly provide. Hopefully, these suggestions from patients will help the care of future loss families.
 

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures. Email her at obnews@mdedge.com.

Reference

1. BJOG. 2014 Jul; 121(8):943-50. doi: 10.1111/1471-0528.12656.

Every antepartum record, whether it is on paper or EMR, has a space asking whether the patient feels fetal movement at the visit. Every provider inherently knows that fetal movement is important and worth asking about at each visit. Yet the education for patients about fetal movement and when to alert a provider to changes is not currently standardized in the United States. There is no practice bulletin or guideline from the American College of Obstetricians and Gynecologists and, therefore, there is a wide variation in clinical practice. An Australian study found that 97% of women were asked about fetal movement, but only 62% reported formal education regarding fetal movement. More concerning, only 40% were advised to call immediately if concerned about fetal movement change. A quarter were told to call only if baby moved fewer than 10 times in an hour.¹

We have a standardized approach to most aspects of prenatal care. We know what to do if the patient has contractions, or protein in their urine, or an increased blood pressure. Our management and education regarding fetal movement must be standardized as well. In this article I will go through the incorrect education that often is given and the data that do not support this. Evidence in other countries indicates that appropriate, thoughtful education can reduce the stillbirth rate. We need a similar care plan or model for fetal movement education in the United States.
 

Myth one: Kick counts

When education is done, kick counts are far and away what providers and nurses advise in the clinic and hospital triage when women present with complaint of decreased fetal movement. The standard approach to this is advising the patient to perform a kick count several times per day to check in on the baby and call if less than 10 kicks per hour. This is not bad advice as it may help create awareness for the mom about what is “normal” for her baby and may help her to “check in” on the baby when she is occupied at work or with older children. However, advising that a kick count should be done to reassure a patient about a concerning change in fetal movement is not supported in the literature. A meta-analysis in the February 2020 issue of the Green Journal found that advised kick count monitoring did not significantly reduce stillbirth risk.² Research shows that most moms will get 10 kicks normally within an hour, but there are no data showing what percentage of moms with perceived decreased fetal movement also will get a “passing” result despite their concern. For example, take a patient who normally feels 50 movements in an hour and is not reassured by 10 movements in an hour, but because she is told that 10 movements is okay, she tries not to worry about the concerning change. Many mothers in the stillbirth community report “passing kick counts” in the days leading up to the diagnosis. We need to move away from kick count education to a much simpler plan. We must tell patients if they are worried about a concerning change in fetal movement, they should call their provider.

Myth 2: Fetuses slow down at the end of pregnancy

There is a very common myth that fetuses slow down at the end of pregnancy, especially once labor has started. A study in the Journal of Physiology continuously monitored term fetuses when mom was both awake and asleep. The study also looked at the effect on fetal heart rate and fetal activity based on different maternal positions. The study found the fetuses spent around 90% of the day with active movements and with reactive nonstress tests (NSTs).³ A 2019 study looking at fetal movement at term and preterm in third-trimester patients illustrated that fetal movement does not decrease in frequency or strength at term. It found that only 6% of patients noted decreased strength and 14% decreased frequency of movements at term. Furthermore, 59% reported an increase in strength, and nearly 39% reported an increase in frequency of fetal movements at term.⁴ We must educate patients that a change in frequency or strength of movements is not normal or expected, and they must call if concerned about a change.

Myth 3: Try juice, ice water, or food before coming in for evaluation

A common set of advice when a patient calls with a complaint of decreased fetal movement is to suggest a meal or something sugary, although there is little or no evidence to support this. A randomized controlled trial found maternal perception of increased fetal movement was similar among the two groups. Giving something sugary at NST also was not shown in this study to improve reactivity.⁵ Another randomized, double placebo blind study was done to answer the question of whether glucose via IV helped improve fetal movements and decreased the need for admission for induction or further monitoring. In this study, no difference in outcome is found.⁶

When a patient calls with decreased fetal movement, advice should be to come and be evaluated, not recommendation of measures like ice water, orange juice, or sugary meal because it is not supported by the literature. This incorrect message also may further the false impression that a baby who is not moving is most likely sleeping or is simply in need of sugar, not that the baby may be at risk for impending stillbirth. The Perinatal Society of Australia and New Zealand and Royal College of Obstetricians and Gynecologists have fetal movement protocol that both discourage this advice and encourage immediate evaluation of patients with complaint of concerning fetal movement change.^7,8

Myth 4: An increase in fetal movement is not of concern

I used to believe that increased fetal movement is never of concern. However, the STARS study illustrated that a concerning increase in fetal movement often is noted just before the diagnosis of stillbirth. A single episode of excessively vigorous activity which often is described as frantic or crazy is associated with an odds ratio for stillbirth of 4.3. In the study, 30% of cases reported this, compared with 7% of controls.⁹ In our practice, we manage mothers who call with this concern the same way as a decreased fetal movement complaint, and bring the mother in immediately for evaluation.

Myth 5: Patients all know that a concerning change in fetal movement is a risk factor for stillbirth

Decreased fetal movement has been associated with an increased OR for stillbirth of 4.51.¹⁰ However, patients often do not know of this association. A study in the United States of providers and stillbirth families showed fear of anxiety kept providers from talking about stillbirth and that it still happens. Because of this patients were completely surprised by the diagnosis.¹¹ We tell patients that stillbirth still happens because research by Dr Suzanne Pullen found that 77% of families said they never worried their baby could die outside of the first trimester. Our patients have received this information without increased anxiety and are very appreciative and reassured about the education and protocol (based on the U.K. Saving Babies Lives Care Bundle Version 2) that we have implemented in our practice.

Fact: Fetal movement education guidelines exist and are easy to implement

The practice I am a partner at has been using a formalized method for educating patients about fetal movement over the past year. As mentioned earlier the U.K. and Australia have formal fetal movement education and management guidelines.7,⁸ Both protocols encourage formal education around 20-24 weeks and education for the patient to call immediately with concerns; the patient should be evaluated within 2 hours of the complaint. The formal education we provide is quite simple. The Star Legacy Foundation (United States) and Still Aware (Australia) have created a simple card to educate patients.

Conclusions

When I think about the patients I have cared for who have presented with a stillborn baby, I think often that they usually presented for a complaint other than decreased fetal movement such as labor check or routine prenatal visit. When asked when they last felt fetal movement they will often say days before. This does not need to happen. Protocols in Norway for fetal movement education have shown that patients call sooner with decreased fetal movement when they have received a formal education.¹⁴

Not all stillbirth can be prevented but proper education about fetal movement and not perpetuating dangerous myths about fetal movement, may keep presentations like this from happening. I hope we may soon have a formal protocol for fetal movement education, but until then, I hope some will take these educational tips to heart.
 

Dr. Heather Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, NY. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures.

References

1. Aust N Z J Obstet Gynaecol. 2012 Oct;52(5):445-9.

2. Obstet Gynecol. 2020 Feb;135(2):453-62.

3. J Physiol. 2017 Feb 15;595(4):1213-21.

4. PLOS One. 2019 Jun 12. doi: 10.1371/journal.pone.0217583.

5. J Matern Fetal Neonatal Med. 2013 Jun;26(9):915-9.

6. J Perinatol. 2016 Aug;36(8):598-600.

7. Aust N Z J Obstet Gynaecol. 2018 Aug;58(4):463-8.

8. Reduced fetal movements: Green top #57, Royal College of Obstetricians and Gynaecologists.

9. BMC Pregnancy Childb. 2017. doi: 10.1186/s12884-017-1555-6.

10. BMJ Open. 2018. doi: 10.1136/bmjopen-2017-020031.

11. BMC Pregnancy Childb. 2012. doi: 10.1186/1471-2393-12-137.

12. BMC Pregnancy Childb. 2015. doi: 10.1186/s12884-015-0602-4.

13. EClinicalMedicine. 2019 Apr. doi: 10.1016/j.eclinm.2019.03.014.

14. BMC Pregnancy Childb. 2009. doi: 10.1186/1471-2393-9-32.

Every antepartum record, whether it is on paper or EMR, has a space asking whether the patient feels fetal movement at the visit. Every provider inherently knows that fetal movement is important and worth asking about at each visit. Yet the education for patients about fetal movement and when to alert a provider to changes is not currently standardized in the United States. There is no practice bulletin or guideline from the American College of Obstetricians and Gynecologists and, therefore, there is a wide variation in clinical practice. An Australian study found that 97% of women were asked about fetal movement, but only 62% reported formal education regarding fetal movement. More concerning, only 40% were advised to call immediately if concerned about fetal movement change. A quarter were told to call only if baby moved fewer than 10 times in an hour.¹

We have a standardized approach to most aspects of prenatal care. We know what to do if the patient has contractions, or protein in their urine, or an increased blood pressure. Our management and education regarding fetal movement must be standardized as well. In this article I will go through the incorrect education that often is given and the data that do not support this. Evidence in other countries indicates that appropriate, thoughtful education can reduce the stillbirth rate. We need a similar care plan or model for fetal movement education in the United States.
 

Myth one: Kick counts

When education is done, kick counts are far and away what providers and nurses advise in the clinic and hospital triage when women present with complaint of decreased fetal movement. The standard approach to this is advising the patient to perform a kick count several times per day to check in on the baby and call if less than 10 kicks per hour. This is not bad advice as it may help create awareness for the mom about what is “normal” for her baby and may help her to “check in” on the baby when she is occupied at work or with older children. However, advising that a kick count should be done to reassure a patient about a concerning change in fetal movement is not supported in the literature. A meta-analysis in the February 2020 issue of the Green Journal found that advised kick count monitoring did not significantly reduce stillbirth risk.² Research shows that most moms will get 10 kicks normally within an hour, but there are no data showing what percentage of moms with perceived decreased fetal movement also will get a “passing” result despite their concern. For example, take a patient who normally feels 50 movements in an hour and is not reassured by 10 movements in an hour, but because she is told that 10 movements is okay, she tries not to worry about the concerning change. Many mothers in the stillbirth community report “passing kick counts” in the days leading up to the diagnosis. We need to move away from kick count education to a much simpler plan. We must tell patients if they are worried about a concerning change in fetal movement, they should call their provider.

Myth 2: Fetuses slow down at the end of pregnancy

There is a very common myth that fetuses slow down at the end of pregnancy, especially once labor has started. A study in the Journal of Physiology continuously monitored term fetuses when mom was both awake and asleep. The study also looked at the effect on fetal heart rate and fetal activity based on different maternal positions. The study found the fetuses spent around 90% of the day with active movements and with reactive nonstress tests (NSTs).³ A 2019 study looking at fetal movement at term and preterm in third-trimester patients illustrated that fetal movement does not decrease in frequency or strength at term. It found that only 6% of patients noted decreased strength and 14% decreased frequency of movements at term. Furthermore, 59% reported an increase in strength, and nearly 39% reported an increase in frequency of fetal movements at term.⁴ We must educate patients that a change in frequency or strength of movements is not normal or expected, and they must call if concerned about a change.

Myth 3: Try juice, ice water, or food before coming in for evaluation

A common set of advice when a patient calls with a complaint of decreased fetal movement is to suggest a meal or something sugary, although there is little or no evidence to support this. A randomized controlled trial found maternal perception of increased fetal movement was similar among the two groups. Giving something sugary at NST also was not shown in this study to improve reactivity.⁵ Another randomized, double placebo blind study was done to answer the question of whether glucose via IV helped improve fetal movements and decreased the need for admission for induction or further monitoring. In this study, no difference in outcome is found.⁶

When a patient calls with decreased fetal movement, advice should be to come and be evaluated, not recommendation of measures like ice water, orange juice, or sugary meal because it is not supported by the literature. This incorrect message also may further the false impression that a baby who is not moving is most likely sleeping or is simply in need of sugar, not that the baby may be at risk for impending stillbirth. The Perinatal Society of Australia and New Zealand and Royal College of Obstetricians and Gynecologists have fetal movement protocol that both discourage this advice and encourage immediate evaluation of patients with complaint of concerning fetal movement change.^7,8

Myth 4: An increase in fetal movement is not of concern

I used to believe that increased fetal movement is never of concern. However, the STARS study illustrated that a concerning increase in fetal movement often is noted just before the diagnosis of stillbirth. A single episode of excessively vigorous activity which often is described as frantic or crazy is associated with an odds ratio for stillbirth of 4.3. In the study, 30% of cases reported this, compared with 7% of controls.⁹ In our practice, we manage mothers who call with this concern the same way as a decreased fetal movement complaint, and bring the mother in immediately for evaluation.

Myth 5: Patients all know that a concerning change in fetal movement is a risk factor for stillbirth

Decreased fetal movement has been associated with an increased OR for stillbirth of 4.51.¹⁰ However, patients often do not know of this association. A study in the United States of providers and stillbirth families showed fear of anxiety kept providers from talking about stillbirth and that it still happens. Because of this patients were completely surprised by the diagnosis.¹¹ We tell patients that stillbirth still happens because research by Dr Suzanne Pullen found that 77% of families said they never worried their baby could die outside of the first trimester. Our patients have received this information without increased anxiety and are very appreciative and reassured about the education and protocol (based on the U.K. Saving Babies Lives Care Bundle Version 2) that we have implemented in our practice.

Fact: Fetal movement education guidelines exist and are easy to implement

The practice I am a partner at has been using a formalized method for educating patients about fetal movement over the past year. As mentioned earlier the U.K. and Australia have formal fetal movement education and management guidelines.7,⁸ Both protocols encourage formal education around 20-24 weeks and education for the patient to call immediately with concerns; the patient should be evaluated within 2 hours of the complaint. The formal education we provide is quite simple. The Star Legacy Foundation (United States) and Still Aware (Australia) have created a simple card to educate patients.

Conclusions

When I think about the patients I have cared for who have presented with a stillborn baby, I think often that they usually presented for a complaint other than decreased fetal movement such as labor check or routine prenatal visit. When asked when they last felt fetal movement they will often say days before. This does not need to happen. Protocols in Norway for fetal movement education have shown that patients call sooner with decreased fetal movement when they have received a formal education.¹⁴

Not all stillbirth can be prevented but proper education about fetal movement and not perpetuating dangerous myths about fetal movement, may keep presentations like this from happening. I hope we may soon have a formal protocol for fetal movement education, but until then, I hope some will take these educational tips to heart.
 

Dr. Heather Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, NY. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures.

References

1. Aust N Z J Obstet Gynaecol. 2012 Oct;52(5):445-9.

2. Obstet Gynecol. 2020 Feb;135(2):453-62.

3. J Physiol. 2017 Feb 15;595(4):1213-21.

4. PLOS One. 2019 Jun 12. doi: 10.1371/journal.pone.0217583.

5. J Matern Fetal Neonatal Med. 2013 Jun;26(9):915-9.

6. J Perinatol. 2016 Aug;36(8):598-600.

7. Aust N Z J Obstet Gynaecol. 2018 Aug;58(4):463-8.

8. Reduced fetal movements: Green top #57, Royal College of Obstetricians and Gynaecologists.

9. BMC Pregnancy Childb. 2017. doi: 10.1186/s12884-017-1555-6.

10. BMJ Open. 2018. doi: 10.1136/bmjopen-2017-020031.

11. BMC Pregnancy Childb. 2012. doi: 10.1186/1471-2393-12-137.

12. BMC Pregnancy Childb. 2015. doi: 10.1186/s12884-015-0602-4.

13. EClinicalMedicine. 2019 Apr. doi: 10.1016/j.eclinm.2019.03.014.

14. BMC Pregnancy Childb. 2009. doi: 10.1186/1471-2393-9-32.

Every antepartum record, whether it is on paper or EMR, has a space asking whether the patient feels fetal movement at the visit. Every provider inherently knows that fetal movement is important and worth asking about at each visit. Yet the education for patients about fetal movement and when to alert a provider to changes is not currently standardized in the United States. There is no practice bulletin or guideline from the American College of Obstetricians and Gynecologists and, therefore, there is a wide variation in clinical practice. An Australian study found that 97% of women were asked about fetal movement, but only 62% reported formal education regarding fetal movement. More concerning, only 40% were advised to call immediately if concerned about fetal movement change. A quarter were told to call only if baby moved fewer than 10 times in an hour.¹

We have a standardized approach to most aspects of prenatal care. We know what to do if the patient has contractions, or protein in their urine, or an increased blood pressure. Our management and education regarding fetal movement must be standardized as well. In this article I will go through the incorrect education that often is given and the data that do not support this. Evidence in other countries indicates that appropriate, thoughtful education can reduce the stillbirth rate. We need a similar care plan or model for fetal movement education in the United States.
 

Myth one: Kick counts

When education is done, kick counts are far and away what providers and nurses advise in the clinic and hospital triage when women present with complaint of decreased fetal movement. The standard approach to this is advising the patient to perform a kick count several times per day to check in on the baby and call if less than 10 kicks per hour. This is not bad advice as it may help create awareness for the mom about what is “normal” for her baby and may help her to “check in” on the baby when she is occupied at work or with older children. However, advising that a kick count should be done to reassure a patient about a concerning change in fetal movement is not supported in the literature. A meta-analysis in the February 2020 issue of the Green Journal found that advised kick count monitoring did not significantly reduce stillbirth risk.² Research shows that most moms will get 10 kicks normally within an hour, but there are no data showing what percentage of moms with perceived decreased fetal movement also will get a “passing” result despite their concern. For example, take a patient who normally feels 50 movements in an hour and is not reassured by 10 movements in an hour, but because she is told that 10 movements is okay, she tries not to worry about the concerning change. Many mothers in the stillbirth community report “passing kick counts” in the days leading up to the diagnosis. We need to move away from kick count education to a much simpler plan. We must tell patients if they are worried about a concerning change in fetal movement, they should call their provider.

Myth 2: Fetuses slow down at the end of pregnancy

There is a very common myth that fetuses slow down at the end of pregnancy, especially once labor has started. A study in the Journal of Physiology continuously monitored term fetuses when mom was both awake and asleep. The study also looked at the effect on fetal heart rate and fetal activity based on different maternal positions. The study found the fetuses spent around 90% of the day with active movements and with reactive nonstress tests (NSTs).³ A 2019 study looking at fetal movement at term and preterm in third-trimester patients illustrated that fetal movement does not decrease in frequency or strength at term. It found that only 6% of patients noted decreased strength and 14% decreased frequency of movements at term. Furthermore, 59% reported an increase in strength, and nearly 39% reported an increase in frequency of fetal movements at term.⁴ We must educate patients that a change in frequency or strength of movements is not normal or expected, and they must call if concerned about a change.

Myth 3: Try juice, ice water, or food before coming in for evaluation

A common set of advice when a patient calls with a complaint of decreased fetal movement is to suggest a meal or something sugary, although there is little or no evidence to support this. A randomized controlled trial found maternal perception of increased fetal movement was similar among the two groups. Giving something sugary at NST also was not shown in this study to improve reactivity.⁵ Another randomized, double placebo blind study was done to answer the question of whether glucose via IV helped improve fetal movements and decreased the need for admission for induction or further monitoring. In this study, no difference in outcome is found.⁶

When a patient calls with decreased fetal movement, advice should be to come and be evaluated, not recommendation of measures like ice water, orange juice, or sugary meal because it is not supported by the literature. This incorrect message also may further the false impression that a baby who is not moving is most likely sleeping or is simply in need of sugar, not that the baby may be at risk for impending stillbirth. The Perinatal Society of Australia and New Zealand and Royal College of Obstetricians and Gynecologists have fetal movement protocol that both discourage this advice and encourage immediate evaluation of patients with complaint of concerning fetal movement change.^7,8

Myth 4: An increase in fetal movement is not of concern

I used to believe that increased fetal movement is never of concern. However, the STARS study illustrated that a concerning increase in fetal movement often is noted just before the diagnosis of stillbirth. A single episode of excessively vigorous activity which often is described as frantic or crazy is associated with an odds ratio for stillbirth of 4.3. In the study, 30% of cases reported this, compared with 7% of controls.⁹ In our practice, we manage mothers who call with this concern the same way as a decreased fetal movement complaint, and bring the mother in immediately for evaluation.

Myth 5: Patients all know that a concerning change in fetal movement is a risk factor for stillbirth

Decreased fetal movement has been associated with an increased OR for stillbirth of 4.51.¹⁰ However, patients often do not know of this association. A study in the United States of providers and stillbirth families showed fear of anxiety kept providers from talking about stillbirth and that it still happens. Because of this patients were completely surprised by the diagnosis.¹¹ We tell patients that stillbirth still happens because research by Dr Suzanne Pullen found that 77% of families said they never worried their baby could die outside of the first trimester. Our patients have received this information without increased anxiety and are very appreciative and reassured about the education and protocol (based on the U.K. Saving Babies Lives Care Bundle Version 2) that we have implemented in our practice.

Fact: Fetal movement education guidelines exist and are easy to implement

The practice I am a partner at has been using a formalized method for educating patients about fetal movement over the past year. As mentioned earlier the U.K. and Australia have formal fetal movement education and management guidelines.7,⁸ Both protocols encourage formal education around 20-24 weeks and education for the patient to call immediately with concerns; the patient should be evaluated within 2 hours of the complaint. The formal education we provide is quite simple. The Star Legacy Foundation (United States) and Still Aware (Australia) have created a simple card to educate patients.

Conclusions

When I think about the patients I have cared for who have presented with a stillborn baby, I think often that they usually presented for a complaint other than decreased fetal movement such as labor check or routine prenatal visit. When asked when they last felt fetal movement they will often say days before. This does not need to happen. Protocols in Norway for fetal movement education have shown that patients call sooner with decreased fetal movement when they have received a formal education.¹⁴

Not all stillbirth can be prevented but proper education about fetal movement and not perpetuating dangerous myths about fetal movement, may keep presentations like this from happening. I hope we may soon have a formal protocol for fetal movement education, but until then, I hope some will take these educational tips to heart.
 

Dr. Heather Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, NY. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures.

References

1. Aust N Z J Obstet Gynaecol. 2012 Oct;52(5):445-9.

2. Obstet Gynecol. 2020 Feb;135(2):453-62.

3. J Physiol. 2017 Feb 15;595(4):1213-21.

4. PLOS One. 2019 Jun 12. doi: 10.1371/journal.pone.0217583.

5. J Matern Fetal Neonatal Med. 2013 Jun;26(9):915-9.

6. J Perinatol. 2016 Aug;36(8):598-600.

7. Aust N Z J Obstet Gynaecol. 2018 Aug;58(4):463-8.

8. Reduced fetal movements: Green top #57, Royal College of Obstetricians and Gynaecologists.

9. BMC Pregnancy Childb. 2017. doi: 10.1186/s12884-017-1555-6.

10. BMJ Open. 2018. doi: 10.1136/bmjopen-2017-020031.

11. BMC Pregnancy Childb. 2012. doi: 10.1186/1471-2393-12-137.

12. BMC Pregnancy Childb. 2015. doi: 10.1186/s12884-015-0602-4.

13. EClinicalMedicine. 2019 Apr. doi: 10.1016/j.eclinm.2019.03.014.

14. BMC Pregnancy Childb. 2009. doi: 10.1186/1471-2393-9-32.

One of hardest parts of being an obstetrician is taking care of patients who experience a stillbirth. I am very comfortable with the care of a grieving patient and I always have been, although I am not sure why. I have a model of care that I have evolved in my 16 years since medical school graduation. This model is not based on formal instruction because I received none, but on my natural instincts of what a grieving mom and her family need to hear and receive in the worst moments of their lives. All obstetrics providers grieve the loss of the baby, but often not with the patient but on our own. We may do this because we want to respect the patient’s privacy or because we are not sure of the words to say. I hope I can provide some guidance for those who struggle with what to do.

SDI Productions/E+

I delivered my first stillborn baby as a third-year medical student. My mentor, a chief resident, saw something in me and encouraged me to care for this mother. She had twins and one baby was still living, but the prognosis was poor since this was the surviving twin from a monochorionic diamniotic pregnancy. On the day of the mom’s induction, I just pulled up a chair and talked with her. We talked about her life, the loss of the first baby several weeks before, and her hope that her surviving son would be okay. She felt so bonded to me that she refused to push until I was there. Her delivery is still firm in my mind. I still remember 17 years later the room she delivered in.

My first loss (stillbirth) as a resident was my intern year – a beautiful baby named Jude, who was stillborn at 39 weeks. After delivering Jude, I asked the family about the funeral arrangements. Three days later, I attended his funeral. I looked all around for the mother’s attending doctors but none of them were there. I remember thinking then that it was a given that they would be there, but now I know that it is rare. I also learned a lot about the grief a stillborn baby brings while listening to Jude’s father’s eulogy. He talked about how Jude would never bake cookies with Aunt Jane, ride the slide with cousin Chris, or put on a yellow backpack and ride the bus on the first day of school. Because of this eulogy, I understood this unique kind of grief that these losses bring early in my training.

I delivered many losses in my residency. The attendings left soon after the birth and I stayed behind with the family. I sat and counseled the families, and I helped them make memories. I realized that to care for these patients, I would need to trust my instincts because there was no formal and little informal training on how to care for families who lost their babies.

Once I completed residency, I was really able to do my “thing.” At loss deliveries, I was able to model for residents my method of care. I showed them that families want and need attention, support, and guidance. I modeled for them how to deliver and greet the baby. That it is not necessary to leave the room right after the birth, and it is okay to grieve and help families meet their babies. I modeled commenting on the baby’s features, on who they looked like. I showed how laughing about how the baby has grandma’s nose is okay. I showed them that it is okay to ask to hold and get a picture taken with the baby. I showed them that these are the only moments these families will get with their babies, and it is our job to help them do this. The family will have many moments alone in the days and weeks to come. They need our support and guidance. It is a part of being an ob.gyn. to care for families after stillbirths, and we do not want our patients to feel abandoned during this time by those they entrust to care for them.

I also was able to create a model for aftercare. I call my families often after they go home. Sometimes I catch them in the anger stage of the grief process and I let them vent. I work through this with them, and I answer their hardest and sometimes accusatory questions regarding care leading up to the diagnosis. I am not saying this is easy for me or for them. I think fear of these tough conversations is a barrier to giving the emotional support that these families need. I work through this with them in an honest and open manner. I also call to check on the patients as much as possible, especially on anniversaries. I am not saying that all providers must follow this model. This is my passion and is natural for me, but data clearly show that the standard of emotional care we provide is not what patients need at this time. Thankfully, there is an amazing resource of grief counselors, social workers, online resources, and support groups for these families to help them get through the tragedy. These resources, however, are not the provider who spent this precious time with them and their beloved baby, and our emotional support is invaluable.

This past year has been very eventful for me. One of my patients delivered a new baby, after a prior loss, and asked if we could teach together. I had mentioned that everything I do with stillbirths is not based on my residency education, but on my experience and instinctual feeling of what families need. She knew from friends in bereavement circles that they felt that their care was different. We started teaching last summer and have done 10 training sessions to date; hopefully we will continue to teach new groups of nurses, residents, medical students, doulas, and physician assistant students each year.

This year also was eventful because I discovered the Star Legacy Foundation, a national not-for-profit organization with the goal of spreading awareness, education, and prevention regarding stillbirth. I attended their 2019 Summit in Minnesota. I thought I would meet many more doctors and midwives like myself, and I would learn even more about care for bereaved patients. However, that summer I learned preventing stillbirth may be possible from the then chief medical officer of Scotland, Catherine Calderwood, MB ChB. She talked about the preventive protocol she had created that had reduced the stillbirth rate by 23%. Because I was one of only five ob.gyn. nonspeaker attendees in a room of 400, I realized I had a real opportunity to try to bring some model for prevention to the United States. I brought the U.K. protocol to my practice and we have been doing it now for 9 months. (See “Decreased fetal movement: Time to educate patients and ourselves” at mdedge.com/pediatrics.)

I have had a year to think about why the U.S. stillbirth rate is higher than that of many high-income nations and why we have the lowest annual rate of reduction in the 2016 Lancet series among high resource nations.¹ I think it is due to lack of education and training for providers in stillbirth prevention and care, which has led to further marginalization and stigmatization of bereaved moms. This has pushed them further into the shadows and makes it taboo to share their stories. It is providers being fearful to even mention to patients that stillbirth still happens. It is the lack of any protocol on how to educate patients and providers about fetal movement, and what to do if pregnant women complain about a decrease or change in fetal movement. I think a lot of this stems from an innate discomfort that obstetric providers have in the care of these patients. That if women felt cared for and empowered to tell their stories, there would be more efforts at stillbirth education and prevention.

I often think of an experience that the founder of Star Legacy, Lindsey Wimmer, experienced when she lost her son, Garrett, 16 years ago. She told a story in the documentary, “Don’t talk about the baby.” She tells that on the first night of the induction, the nurse came in and told her that the attending wanted to turn off the oxytocin so “she could get her rest.” I heard this and immediately knew the attending’s true reason for turning off the oxytocin. Lindsey then said she knew it was because the attending did not want to wake up to deliver a dead baby. I wrote Lindsey that day and told her I completely agreed and apologized on behalf of my profession for that care. She wrote me back that she had waited 16 years to have a provider validate her feelings about this. I told her I think her doctor was fearful and uncomfortable with this birth and was avoiding it, but I believe with better education and training this can change. I want to deliver babies like Garrett during my shift, because it is giving this vital care that reminds me why I became a doctor in the first place.

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures. Email her a obnews@mdedge.com.

References

1. “Stillbirths 2016: ending preventable stillbirths.” Series from The Lancet journals. Published: Jan. 20, 2016.

2. BMC Pregnancy Childbirth. 2012 Nov 27. doi: 10.1186/1471-2393-12-137.

One of hardest parts of being an obstetrician is taking care of patients who experience a stillbirth. I am very comfortable with the care of a grieving patient and I always have been, although I am not sure why. I have a model of care that I have evolved in my 16 years since medical school graduation. This model is not based on formal instruction because I received none, but on my natural instincts of what a grieving mom and her family need to hear and receive in the worst moments of their lives. All obstetrics providers grieve the loss of the baby, but often not with the patient but on our own. We may do this because we want to respect the patient’s privacy or because we are not sure of the words to say. I hope I can provide some guidance for those who struggle with what to do.

SDI Productions/E+

I delivered my first stillborn baby as a third-year medical student. My mentor, a chief resident, saw something in me and encouraged me to care for this mother. She had twins and one baby was still living, but the prognosis was poor since this was the surviving twin from a monochorionic diamniotic pregnancy. On the day of the mom’s induction, I just pulled up a chair and talked with her. We talked about her life, the loss of the first baby several weeks before, and her hope that her surviving son would be okay. She felt so bonded to me that she refused to push until I was there. Her delivery is still firm in my mind. I still remember 17 years later the room she delivered in.

My first loss (stillbirth) as a resident was my intern year – a beautiful baby named Jude, who was stillborn at 39 weeks. After delivering Jude, I asked the family about the funeral arrangements. Three days later, I attended his funeral. I looked all around for the mother’s attending doctors but none of them were there. I remember thinking then that it was a given that they would be there, but now I know that it is rare. I also learned a lot about the grief a stillborn baby brings while listening to Jude’s father’s eulogy. He talked about how Jude would never bake cookies with Aunt Jane, ride the slide with cousin Chris, or put on a yellow backpack and ride the bus on the first day of school. Because of this eulogy, I understood this unique kind of grief that these losses bring early in my training.

I delivered many losses in my residency. The attendings left soon after the birth and I stayed behind with the family. I sat and counseled the families, and I helped them make memories. I realized that to care for these patients, I would need to trust my instincts because there was no formal and little informal training on how to care for families who lost their babies.

Once I completed residency, I was really able to do my “thing.” At loss deliveries, I was able to model for residents my method of care. I showed them that families want and need attention, support, and guidance. I modeled for them how to deliver and greet the baby. That it is not necessary to leave the room right after the birth, and it is okay to grieve and help families meet their babies. I modeled commenting on the baby’s features, on who they looked like. I showed how laughing about how the baby has grandma’s nose is okay. I showed them that it is okay to ask to hold and get a picture taken with the baby. I showed them that these are the only moments these families will get with their babies, and it is our job to help them do this. The family will have many moments alone in the days and weeks to come. They need our support and guidance. It is a part of being an ob.gyn. to care for families after stillbirths, and we do not want our patients to feel abandoned during this time by those they entrust to care for them.

I also was able to create a model for aftercare. I call my families often after they go home. Sometimes I catch them in the anger stage of the grief process and I let them vent. I work through this with them, and I answer their hardest and sometimes accusatory questions regarding care leading up to the diagnosis. I am not saying this is easy for me or for them. I think fear of these tough conversations is a barrier to giving the emotional support that these families need. I work through this with them in an honest and open manner. I also call to check on the patients as much as possible, especially on anniversaries. I am not saying that all providers must follow this model. This is my passion and is natural for me, but data clearly show that the standard of emotional care we provide is not what patients need at this time. Thankfully, there is an amazing resource of grief counselors, social workers, online resources, and support groups for these families to help them get through the tragedy. These resources, however, are not the provider who spent this precious time with them and their beloved baby, and our emotional support is invaluable.

This past year has been very eventful for me. One of my patients delivered a new baby, after a prior loss, and asked if we could teach together. I had mentioned that everything I do with stillbirths is not based on my residency education, but on my experience and instinctual feeling of what families need. She knew from friends in bereavement circles that they felt that their care was different. We started teaching last summer and have done 10 training sessions to date; hopefully we will continue to teach new groups of nurses, residents, medical students, doulas, and physician assistant students each year.

This year also was eventful because I discovered the Star Legacy Foundation, a national not-for-profit organization with the goal of spreading awareness, education, and prevention regarding stillbirth. I attended their 2019 Summit in Minnesota. I thought I would meet many more doctors and midwives like myself, and I would learn even more about care for bereaved patients. However, that summer I learned preventing stillbirth may be possible from the then chief medical officer of Scotland, Catherine Calderwood, MB ChB. She talked about the preventive protocol she had created that had reduced the stillbirth rate by 23%. Because I was one of only five ob.gyn. nonspeaker attendees in a room of 400, I realized I had a real opportunity to try to bring some model for prevention to the United States. I brought the U.K. protocol to my practice and we have been doing it now for 9 months. (See “Decreased fetal movement: Time to educate patients and ourselves” at mdedge.com/pediatrics.)

I have had a year to think about why the U.S. stillbirth rate is higher than that of many high-income nations and why we have the lowest annual rate of reduction in the 2016 Lancet series among high resource nations.¹ I think it is due to lack of education and training for providers in stillbirth prevention and care, which has led to further marginalization and stigmatization of bereaved moms. This has pushed them further into the shadows and makes it taboo to share their stories. It is providers being fearful to even mention to patients that stillbirth still happens. It is the lack of any protocol on how to educate patients and providers about fetal movement, and what to do if pregnant women complain about a decrease or change in fetal movement. I think a lot of this stems from an innate discomfort that obstetric providers have in the care of these patients. That if women felt cared for and empowered to tell their stories, there would be more efforts at stillbirth education and prevention.

I often think of an experience that the founder of Star Legacy, Lindsey Wimmer, experienced when she lost her son, Garrett, 16 years ago. She told a story in the documentary, “Don’t talk about the baby.” She tells that on the first night of the induction, the nurse came in and told her that the attending wanted to turn off the oxytocin so “she could get her rest.” I heard this and immediately knew the attending’s true reason for turning off the oxytocin. Lindsey then said she knew it was because the attending did not want to wake up to deliver a dead baby. I wrote Lindsey that day and told her I completely agreed and apologized on behalf of my profession for that care. She wrote me back that she had waited 16 years to have a provider validate her feelings about this. I told her I think her doctor was fearful and uncomfortable with this birth and was avoiding it, but I believe with better education and training this can change. I want to deliver babies like Garrett during my shift, because it is giving this vital care that reminds me why I became a doctor in the first place.

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures. Email her a obnews@mdedge.com.

References

1. “Stillbirths 2016: ending preventable stillbirths.” Series from The Lancet journals. Published: Jan. 20, 2016.

2. BMC Pregnancy Childbirth. 2012 Nov 27. doi: 10.1186/1471-2393-12-137.

One of hardest parts of being an obstetrician is taking care of patients who experience a stillbirth. I am very comfortable with the care of a grieving patient and I always have been, although I am not sure why. I have a model of care that I have evolved in my 16 years since medical school graduation. This model is not based on formal instruction because I received none, but on my natural instincts of what a grieving mom and her family need to hear and receive in the worst moments of their lives. All obstetrics providers grieve the loss of the baby, but often not with the patient but on our own. We may do this because we want to respect the patient’s privacy or because we are not sure of the words to say. I hope I can provide some guidance for those who struggle with what to do.

SDI Productions/E+

I delivered my first stillborn baby as a third-year medical student. My mentor, a chief resident, saw something in me and encouraged me to care for this mother. She had twins and one baby was still living, but the prognosis was poor since this was the surviving twin from a monochorionic diamniotic pregnancy. On the day of the mom’s induction, I just pulled up a chair and talked with her. We talked about her life, the loss of the first baby several weeks before, and her hope that her surviving son would be okay. She felt so bonded to me that she refused to push until I was there. Her delivery is still firm in my mind. I still remember 17 years later the room she delivered in.

My first loss (stillbirth) as a resident was my intern year – a beautiful baby named Jude, who was stillborn at 39 weeks. After delivering Jude, I asked the family about the funeral arrangements. Three days later, I attended his funeral. I looked all around for the mother’s attending doctors but none of them were there. I remember thinking then that it was a given that they would be there, but now I know that it is rare. I also learned a lot about the grief a stillborn baby brings while listening to Jude’s father’s eulogy. He talked about how Jude would never bake cookies with Aunt Jane, ride the slide with cousin Chris, or put on a yellow backpack and ride the bus on the first day of school. Because of this eulogy, I understood this unique kind of grief that these losses bring early in my training.

I delivered many losses in my residency. The attendings left soon after the birth and I stayed behind with the family. I sat and counseled the families, and I helped them make memories. I realized that to care for these patients, I would need to trust my instincts because there was no formal and little informal training on how to care for families who lost their babies.

Once I completed residency, I was really able to do my “thing.” At loss deliveries, I was able to model for residents my method of care. I showed them that families want and need attention, support, and guidance. I modeled for them how to deliver and greet the baby. That it is not necessary to leave the room right after the birth, and it is okay to grieve and help families meet their babies. I modeled commenting on the baby’s features, on who they looked like. I showed how laughing about how the baby has grandma’s nose is okay. I showed them that it is okay to ask to hold and get a picture taken with the baby. I showed them that these are the only moments these families will get with their babies, and it is our job to help them do this. The family will have many moments alone in the days and weeks to come. They need our support and guidance. It is a part of being an ob.gyn. to care for families after stillbirths, and we do not want our patients to feel abandoned during this time by those they entrust to care for them.

I also was able to create a model for aftercare. I call my families often after they go home. Sometimes I catch them in the anger stage of the grief process and I let them vent. I work through this with them, and I answer their hardest and sometimes accusatory questions regarding care leading up to the diagnosis. I am not saying this is easy for me or for them. I think fear of these tough conversations is a barrier to giving the emotional support that these families need. I work through this with them in an honest and open manner. I also call to check on the patients as much as possible, especially on anniversaries. I am not saying that all providers must follow this model. This is my passion and is natural for me, but data clearly show that the standard of emotional care we provide is not what patients need at this time. Thankfully, there is an amazing resource of grief counselors, social workers, online resources, and support groups for these families to help them get through the tragedy. These resources, however, are not the provider who spent this precious time with them and their beloved baby, and our emotional support is invaluable.

This past year has been very eventful for me. One of my patients delivered a new baby, after a prior loss, and asked if we could teach together. I had mentioned that everything I do with stillbirths is not based on my residency education, but on my experience and instinctual feeling of what families need. She knew from friends in bereavement circles that they felt that their care was different. We started teaching last summer and have done 10 training sessions to date; hopefully we will continue to teach new groups of nurses, residents, medical students, doulas, and physician assistant students each year.

This year also was eventful because I discovered the Star Legacy Foundation, a national not-for-profit organization with the goal of spreading awareness, education, and prevention regarding stillbirth. I attended their 2019 Summit in Minnesota. I thought I would meet many more doctors and midwives like myself, and I would learn even more about care for bereaved patients. However, that summer I learned preventing stillbirth may be possible from the then chief medical officer of Scotland, Catherine Calderwood, MB ChB. She talked about the preventive protocol she had created that had reduced the stillbirth rate by 23%. Because I was one of only five ob.gyn. nonspeaker attendees in a room of 400, I realized I had a real opportunity to try to bring some model for prevention to the United States. I brought the U.K. protocol to my practice and we have been doing it now for 9 months. (See “Decreased fetal movement: Time to educate patients and ourselves” at mdedge.com/pediatrics.)

I have had a year to think about why the U.S. stillbirth rate is higher than that of many high-income nations and why we have the lowest annual rate of reduction in the 2016 Lancet series among high resource nations.¹ I think it is due to lack of education and training for providers in stillbirth prevention and care, which has led to further marginalization and stigmatization of bereaved moms. This has pushed them further into the shadows and makes it taboo to share their stories. It is providers being fearful to even mention to patients that stillbirth still happens. It is the lack of any protocol on how to educate patients and providers about fetal movement, and what to do if pregnant women complain about a decrease or change in fetal movement. I think a lot of this stems from an innate discomfort that obstetric providers have in the care of these patients. That if women felt cared for and empowered to tell their stories, there would be more efforts at stillbirth education and prevention.

I often think of an experience that the founder of Star Legacy, Lindsey Wimmer, experienced when she lost her son, Garrett, 16 years ago. She told a story in the documentary, “Don’t talk about the baby.” She tells that on the first night of the induction, the nurse came in and told her that the attending wanted to turn off the oxytocin so “she could get her rest.” I heard this and immediately knew the attending’s true reason for turning off the oxytocin. Lindsey then said she knew it was because the attending did not want to wake up to deliver a dead baby. I wrote Lindsey that day and told her I completely agreed and apologized on behalf of my profession for that care. She wrote me back that she had waited 16 years to have a provider validate her feelings about this. I told her I think her doctor was fearful and uncomfortable with this birth and was avoiding it, but I believe with better education and training this can change. I want to deliver babies like Garrett during my shift, because it is giving this vital care that reminds me why I became a doctor in the first place.

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures. Email her a obnews@mdedge.com.

References

1. “Stillbirths 2016: ending preventable stillbirths.” Series from The Lancet journals. Published: Jan. 20, 2016.

2. BMC Pregnancy Childbirth. 2012 Nov 27. doi: 10.1186/1471-2393-12-137.

We have all as providers experienced the tragic stillbirth of a term fetus for one of our patients. Too often no fetal movement was felt for days, but the patient never called. Or the patient did call, but the nonstress test (NST) was reactive or the ultrasound showed normal growth and fluid or the biophysical profile (BPP) was 8/8. Yet the patient still presented with a stillborn fetus a day later. Was the first patient simply so fearful of the likely deceased child within her that she did not call? Or did she simply not know to report it because she was not educated about what decreased fetal movement could mean? Could the second example have been prevented even though the testing was normal? I believe both scenarios could have been prevented with better education for both providers and patients.

The national stillbirth rate has remained relatively stagnant since 2000, despite many improvements in guidelines for the management of higher risk pregnancies.¹ We follow the growth of these pregnancies, do NSTs, and often induce these patients prior to the due date. We do this in the hope of having a healthy mom and baby. However, an analysis of 614 stillbirth cases and 1,816 control deliveries found that 81% of patients presenting with a stillborn baby had no risks factors that required additional monitoring.² Nearly 66% of 1,714 patients with a late stillbirth reported decreased fetal movement, no fetal movement, or a concerning increase in fetal movement in the days leading up to their baby’s death.³ Studies have suggested that persistent decreased fetal movement has an odds ratio for stillbirth of 4.51,⁴ which is higher than hypertensive disease and diabetes for this same outcome by nearly a factor of two. Yet there are no formal guidelines on education for patients or management of this chief complaint.

We assess fetal movement at every prenatal visit but patients who experienced stillbirth will say they didn’t know why. This is because as a culture and a profession we are afraid to talk about such a taboo subject as stillbirth. We are afraid we will scare our patients if we tell them that a decrease in fetal movement or no fetal movement may be because their baby is at risk for this dreaded complication. On one level this argument makes sense, but as soon as the baby is born we give parents plenty of education and advice to keep their children safe. Telling a parent to remove all bedding, put their baby on their back, and keep their baby from being too warm to prevent sudden infant death syndrome (SIDS) is very scary. However, this education is necessary. If moms simply know the reason why we ask about fetal movements, they may not wait 2 days before they call. We must have faith that pregnant women can handle this education about decreased fetal movement.

Next most important is our response to the complaint of decreased fetal movement. Often when the NST is reactive or the ultrasound is normal, we assume the baby is at no risk and we reassure the mother that everything is fine. We often tell moms the false myth that babies slow down at the end or advise kick counts after this complaint despite studies failing to show their utility. Because the education about kick count is frequency is what matters, a mother may not call if there is a change in pattern or strength – even if she is very worried about this. A baby may “pass” a kick count, but a mom still may be very worried, yet she will not call because the baby “passed.”

Protocols from the United Kingdom and Australia focus on the assumption that the complaint of decreased fetal movement may be the only warning sign of impending stillbirth. Harvey Kliman, MD, PhD, director of reproductive and placental research unit at Yale University, New Haven, Conn. said an analogy to this is a car driving 55 miles per hour despite only 10 miles of gas being left in the tank.* The car is running fine even when it is almost out of gas. That may be why we all have seen a fetus with recent reassuring tests in the last few days who presents stillborn. Perhaps the only warning sign is decreased fetal movement – not a nonreactive NST or low score BPP. Placental insufficiency is often the cause of initially unexplained stillbirth, far more common than “cord accidents.” If we liken the placenta to the “gas tank” for the pregnancy, then decreased fetal movement may be the “low gas” signal on the dashboard. After this patient has a reactive NST and/or reassuring ultrasound, we need to ask her if she is reassured. Data from a study of 380 women found that women who had a gut instinct that something was wrong were 23 times more likely to experience a stillbirth, according to the unadjusted odds ratio from the logistic regression model.⁵ We should follow up closely with moms who are not reassured and consider induction if they are over 39 weeks. We should tell every mom who presents with a concern about fetal movement that she did the right thing, and we want to hear from her again immediately if the movement is decreased again or persists. We cannot make women feel silly for calling. We should do an ultrasound for worried moms even if the NST is reactive to make sure we are not missing oligohydramnios or fetal growth restriction; the latter is the biggest known risk factor for stillbirth. We also should perform an ultrasound for moms with risk factors for stillbirth such as advanced maternal age or black race.

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures.
 

References

1. The Lancet. 2016, Jan 18;387(10018):587-603.

2. JAMA. 2011 Dec 14;306(22):2469-79.

3. BMC Pregnancy Childbirth. 2015 Aug 15;15:172.

4. BMJ Open. 2018 Jul 6;8(7):e020031.

5. Midwifery. 2018 Jul;62:171-6.

6. The Lancet. 2016, Jan 18;387(10019):691-702.

*This article was updated on 5/4/2020.

We have all as providers experienced the tragic stillbirth of a term fetus for one of our patients. Too often no fetal movement was felt for days, but the patient never called. Or the patient did call, but the nonstress test (NST) was reactive or the ultrasound showed normal growth and fluid or the biophysical profile (BPP) was 8/8. Yet the patient still presented with a stillborn fetus a day later. Was the first patient simply so fearful of the likely deceased child within her that she did not call? Or did she simply not know to report it because she was not educated about what decreased fetal movement could mean? Could the second example have been prevented even though the testing was normal? I believe both scenarios could have been prevented with better education for both providers and patients.

The national stillbirth rate has remained relatively stagnant since 2000, despite many improvements in guidelines for the management of higher risk pregnancies.¹ We follow the growth of these pregnancies, do NSTs, and often induce these patients prior to the due date. We do this in the hope of having a healthy mom and baby. However, an analysis of 614 stillbirth cases and 1,816 control deliveries found that 81% of patients presenting with a stillborn baby had no risks factors that required additional monitoring.² Nearly 66% of 1,714 patients with a late stillbirth reported decreased fetal movement, no fetal movement, or a concerning increase in fetal movement in the days leading up to their baby’s death.³ Studies have suggested that persistent decreased fetal movement has an odds ratio for stillbirth of 4.51,⁴ which is higher than hypertensive disease and diabetes for this same outcome by nearly a factor of two. Yet there are no formal guidelines on education for patients or management of this chief complaint.

We assess fetal movement at every prenatal visit but patients who experienced stillbirth will say they didn’t know why. This is because as a culture and a profession we are afraid to talk about such a taboo subject as stillbirth. We are afraid we will scare our patients if we tell them that a decrease in fetal movement or no fetal movement may be because their baby is at risk for this dreaded complication. On one level this argument makes sense, but as soon as the baby is born we give parents plenty of education and advice to keep their children safe. Telling a parent to remove all bedding, put their baby on their back, and keep their baby from being too warm to prevent sudden infant death syndrome (SIDS) is very scary. However, this education is necessary. If moms simply know the reason why we ask about fetal movements, they may not wait 2 days before they call. We must have faith that pregnant women can handle this education about decreased fetal movement.

Next most important is our response to the complaint of decreased fetal movement. Often when the NST is reactive or the ultrasound is normal, we assume the baby is at no risk and we reassure the mother that everything is fine. We often tell moms the false myth that babies slow down at the end or advise kick counts after this complaint despite studies failing to show their utility. Because the education about kick count is frequency is what matters, a mother may not call if there is a change in pattern or strength – even if she is very worried about this. A baby may “pass” a kick count, but a mom still may be very worried, yet she will not call because the baby “passed.”

Protocols from the United Kingdom and Australia focus on the assumption that the complaint of decreased fetal movement may be the only warning sign of impending stillbirth. Harvey Kliman, MD, PhD, director of reproductive and placental research unit at Yale University, New Haven, Conn. said an analogy to this is a car driving 55 miles per hour despite only 10 miles of gas being left in the tank.* The car is running fine even when it is almost out of gas. That may be why we all have seen a fetus with recent reassuring tests in the last few days who presents stillborn. Perhaps the only warning sign is decreased fetal movement – not a nonreactive NST or low score BPP. Placental insufficiency is often the cause of initially unexplained stillbirth, far more common than “cord accidents.” If we liken the placenta to the “gas tank” for the pregnancy, then decreased fetal movement may be the “low gas” signal on the dashboard. After this patient has a reactive NST and/or reassuring ultrasound, we need to ask her if she is reassured. Data from a study of 380 women found that women who had a gut instinct that something was wrong were 23 times more likely to experience a stillbirth, according to the unadjusted odds ratio from the logistic regression model.⁵ We should follow up closely with moms who are not reassured and consider induction if they are over 39 weeks. We should tell every mom who presents with a concern about fetal movement that she did the right thing, and we want to hear from her again immediately if the movement is decreased again or persists. We cannot make women feel silly for calling. We should do an ultrasound for worried moms even if the NST is reactive to make sure we are not missing oligohydramnios or fetal growth restriction; the latter is the biggest known risk factor for stillbirth. We also should perform an ultrasound for moms with risk factors for stillbirth such as advanced maternal age or black race.

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures.
 

References

1. The Lancet. 2016, Jan 18;387(10018):587-603.

2. JAMA. 2011 Dec 14;306(22):2469-79.

3. BMC Pregnancy Childbirth. 2015 Aug 15;15:172.

4. BMJ Open. 2018 Jul 6;8(7):e020031.

5. Midwifery. 2018 Jul;62:171-6.

6. The Lancet. 2016, Jan 18;387(10019):691-702.

*This article was updated on 5/4/2020.

We have all as providers experienced the tragic stillbirth of a term fetus for one of our patients. Too often no fetal movement was felt for days, but the patient never called. Or the patient did call, but the nonstress test (NST) was reactive or the ultrasound showed normal growth and fluid or the biophysical profile (BPP) was 8/8. Yet the patient still presented with a stillborn fetus a day later. Was the first patient simply so fearful of the likely deceased child within her that she did not call? Or did she simply not know to report it because she was not educated about what decreased fetal movement could mean? Could the second example have been prevented even though the testing was normal? I believe both scenarios could have been prevented with better education for both providers and patients.

The national stillbirth rate has remained relatively stagnant since 2000, despite many improvements in guidelines for the management of higher risk pregnancies.¹ We follow the growth of these pregnancies, do NSTs, and often induce these patients prior to the due date. We do this in the hope of having a healthy mom and baby. However, an analysis of 614 stillbirth cases and 1,816 control deliveries found that 81% of patients presenting with a stillborn baby had no risks factors that required additional monitoring.² Nearly 66% of 1,714 patients with a late stillbirth reported decreased fetal movement, no fetal movement, or a concerning increase in fetal movement in the days leading up to their baby’s death.³ Studies have suggested that persistent decreased fetal movement has an odds ratio for stillbirth of 4.51,⁴ which is higher than hypertensive disease and diabetes for this same outcome by nearly a factor of two. Yet there are no formal guidelines on education for patients or management of this chief complaint.

We assess fetal movement at every prenatal visit but patients who experienced stillbirth will say they didn’t know why. This is because as a culture and a profession we are afraid to talk about such a taboo subject as stillbirth. We are afraid we will scare our patients if we tell them that a decrease in fetal movement or no fetal movement may be because their baby is at risk for this dreaded complication. On one level this argument makes sense, but as soon as the baby is born we give parents plenty of education and advice to keep their children safe. Telling a parent to remove all bedding, put their baby on their back, and keep their baby from being too warm to prevent sudden infant death syndrome (SIDS) is very scary. However, this education is necessary. If moms simply know the reason why we ask about fetal movements, they may not wait 2 days before they call. We must have faith that pregnant women can handle this education about decreased fetal movement.

Next most important is our response to the complaint of decreased fetal movement. Often when the NST is reactive or the ultrasound is normal, we assume the baby is at no risk and we reassure the mother that everything is fine. We often tell moms the false myth that babies slow down at the end or advise kick counts after this complaint despite studies failing to show their utility. Because the education about kick count is frequency is what matters, a mother may not call if there is a change in pattern or strength – even if she is very worried about this. A baby may “pass” a kick count, but a mom still may be very worried, yet she will not call because the baby “passed.”

Protocols from the United Kingdom and Australia focus on the assumption that the complaint of decreased fetal movement may be the only warning sign of impending stillbirth. Harvey Kliman, MD, PhD, director of reproductive and placental research unit at Yale University, New Haven, Conn. said an analogy to this is a car driving 55 miles per hour despite only 10 miles of gas being left in the tank.* The car is running fine even when it is almost out of gas. That may be why we all have seen a fetus with recent reassuring tests in the last few days who presents stillborn. Perhaps the only warning sign is decreased fetal movement – not a nonreactive NST or low score BPP. Placental insufficiency is often the cause of initially unexplained stillbirth, far more common than “cord accidents.” If we liken the placenta to the “gas tank” for the pregnancy, then decreased fetal movement may be the “low gas” signal on the dashboard. After this patient has a reactive NST and/or reassuring ultrasound, we need to ask her if she is reassured. Data from a study of 380 women found that women who had a gut instinct that something was wrong were 23 times more likely to experience a stillbirth, according to the unadjusted odds ratio from the logistic regression model.⁵ We should follow up closely with moms who are not reassured and consider induction if they are over 39 weeks. We should tell every mom who presents with a concern about fetal movement that she did the right thing, and we want to hear from her again immediately if the movement is decreased again or persists. We cannot make women feel silly for calling. We should do an ultrasound for worried moms even if the NST is reactive to make sure we are not missing oligohydramnios or fetal growth restriction; the latter is the biggest known risk factor for stillbirth. We also should perform an ultrasound for moms with risk factors for stillbirth such as advanced maternal age or black race.

Dr. Florescue is an ob.gyn. in private practice at Women Gynecology and Childbirth Associates in Rochester, N.Y. She delivers babies at Highland Hospital in Rochester. She has no relevant financial disclosures.
 

References

1. The Lancet. 2016, Jan 18;387(10018):587-603.

2. JAMA. 2011 Dec 14;306(22):2469-79.

3. BMC Pregnancy Childbirth. 2015 Aug 15;15:172.

4. BMJ Open. 2018 Jul 6;8(7):e020031.

5. Midwifery. 2018 Jul;62:171-6.

6. The Lancet. 2016, Jan 18;387(10019):691-702.

*This article was updated on 5/4/2020.