"There is nothing wrong with patients going to a higher-volume center; they know that their outcome will be close to what is available today, compared with new centers that have not done as many of these procedures," Dr. Lim said in an interview. "Patients should hear the options and pick what’s best for them, not just whether to choose the procedure, but also to decide where to go. The reason why MOMS had such difficulty recruiting patients was that they had to uproot themselves to go to a MMC repair center, and a lot of patients decided not to go.
"Regionalization is the future. Spina bifida is one of the most common birth defects, so there is a large number of cases that could benefit" from fetal repair. But what does it mean to be a fetal surgery center, and what does it require," said CHOP’s Dr. Johnson. "These are the ideas that the fetal surgery community is struggling with and trying to address. The big question is which will be the centers of excellence. The first step toward answering this will be to see whether the new centers can replicate the MOMS results, he added.
Spreading the Word About Fetal Surgery
Dr. Mark I. Evans
Another key element in growing fetal MMC repair, and fetal surgeries of all types, is boosting awareness of repair options among primary care obstetrical providers and making referrals more timely.
"The market is controlled by the number of physicians who are aware of surgical interventions," said Dr. Mark I. Evans, a clinical professor of obstetrics, gynecology, and reproductive services at Mount Sinai Medical Center in New York. "The number of anomalies that are potentially amenable to treatment is a small percent of all pregnancies, but with more than 4 million U.S. births per year, it adds up to a fairly substantial number."
Fetal interventions "are accepted therapies; in the fetal community, I don’t think anyone thinks they are still investigational. But the number of cases is small, and a lot of the people who are diagnosing these may not be aware of how successful a lot of the procedures are," said Dr. Johnson.
"Obstetricians and maternal-fetal medicine physicians need to be more aware of what we can do. Our biggest challenge is to disseminate the information. The treatments are safe and effective, and families should at least have the option of going to centers to get more information and make informed decisions."
In addition, "screening ultrasound at between 18 to 20 weeks would be a great thing," he added.
"In the United States, ultrasound screening is becoming more the standard of care, but a lot of screening is not done until 22 or 23 weeks, often too late for patients to be referred to fetal treatment centers for evaluations before 24 weeks so that the option of termination is often no longer available to them. Also, with some anomalies irreversible damage has already occurred by 24 weeks so that fetal therapy would not help. In cases of lower urinary tract obstructions, well over half the cases we see are too late to offer therapy. It is recognized that screening at 19-20 weeks won’t pick up all anomalies, but it would pick up a lot of major anomalies," Dr. Johnson said.