Recently, more news articles are reporting how mothers in the United Kingdom have undergone groundbreaking fetal surgery while pregnant to repair defects in their babies before birth.[1] The common thread in all these stories is that these babies were diagnosed prenatally with spina bifida, a severe congenital disorder in which the spinal column does not close properly during development, also known as a neural tube defect. Spina bifida can cause severe neurologic and intellectual impairment, including paralysis.
Spina bifida is often detected around the 20th week of pregnancy during routine ultrasound scans and testing. Postnatal surgery within the first few days after birth has demonstrated some effectiveness, but doctors have discovered that performing revolutionary surgery to repair the baby’s defect before birth, while still in the mother’s womb, leads to better outcomes for the child. In fact, fetal surgical procedures have been performed for decades in the U.S. to repair several congenital defects such as myelomeningocele, the most severe form of spina bifida. The Management of Myelomeningocele Study (MOMS), a prospective randomized clinical trial from 2003-2010 at three maternal-fetal surgery centers in the U.S. (Children’s Hospital of Philadelphia, Vanderbilt University, and University of California, San Francisco), found that fetal surgery on spina bifida babies before 26 weeks’ gestation was associated with a decreased risk of death or shunting before postnatal age 12 months, as well as improved mental and motor function (including independent walking) at 30 months of age. An increased risk of preterm delivery and maternal morbidity was also observed. Nevertheless, fetal outcomes were so efficacious and beneficial in the prenatal-surgery group, that the trial was stopped early, so that treatment was not withheld from babies randomized to receive standard postnatal repair. Their findings were published in the New England Journal of Medicine in 2011.[2]
Fetal surgery has also proven successful in treating the unborn for several other conditions including sacrococcygeal teratoma (SCT), congenital diaphragmatic hernia (CDH), congenital cystic adenomatoid malformations (CCAM), severe kidney obstruction and oligohydramnios, as well as bladder obstruction and twin-to-twin transfusion syndrome (TTTS) using smaller, fiber-optic-guided endoscopic procedures.[3] This is not to mention all of the in utero therapies currently available to treat the unborn, such as maternal steroid therapy to promote lung maturity in premature fetuses and reduce respiratory distress syndrome (RDS). Advancements in treating the unborn have significantly improved viability and survival rates as early as 22 weeks’ gestation.3
Therefore, treating the unborn in utero is not new to medicine, so why the increased attention to fetal surgery in the U.K.? In part, because of the coordinated efforts of a large team of healthcare providers at the University College London Hospitals (UCLH) and Great Ormond Street Hospital (GOSH), who received training in Belgium and then performed the first two operations in the U.K. last year.[4] About the same time, the U.K. also announced plans to increase National Health Service (NHS) funding to bring more innovative healthcare services to women, such as fetal surgery for spina bifida.[5] Prior to this U.K. initiative, mothers with a prenatal diagnosis of spina bifida were given the option of aborting their child, traveling long distances to have the fetal operation, or having routine postnatal surgery in the U.K. Sadly, the majority of women in the U.K. (72%) chose abortion.[6] Now parents in the U.K. will have the option and real hope of having their child’s spina bifida defect repaired before birth.
Unfortunately, even with these advances in fetal surgery currently available in the U.S., one in every two babies are still terminated in North America following a prenatal diagnosis of spina bifida.[7] With such rapid advancement in the field of prenatal medicine, it’s not clear why. One possibility is that there is more work to be done to increase the quality of prenatal surgical care. As recently discussed in a Lancet editorial, there are no procedures currently in place for reporting fetal surgery outcomes and there exists no formal accredited fellowship program for physicians in fetal intervention.[8] So, there is a real need for increased transparency, monitoring, mandatory reporting and accredited training, especially when fetal surgery procedures involve treating rare conditions with inherently low volume. It is also likely that physician’s views and their interpretation of the benefits and burdens of fetal surgery, which are known to vary by specialty, influence the mother’s decision to abort or proceed with treatment. The American Journal of Obstetrics and Gynecology reported in 2012 that maternal-fetal medicine specialists are more likely than fetal care pediatric specialists to support termination of babies with spina bifida.[9] Similarly, a more recent 2017 study found that maternal fetal medicine specialists are more likely than neonatologists or pediatric surgeons to recommend termination of babies with spina bifida and less likely to recommend prenatal surgery compared to their colleagues.[10] And several parents have reported how they were pressured by physicians to terminate their child upon receiving a prenatal diagnosis of a severe congenital disorder.[11] Perhaps perceptions will change with further advancements in the field that minimize fetal and maternal risks, as well as wider education of physicians on the promising techniques available. But until then, more attention must be given toward creating awareness and unbiased consultation of prenatal treatment options available to women today, so that babies suffering with congenital conditions like spina bifida have an increased chance of life.
Tara Sander Lee, Ph.D. is an associate scholar with the Charlotte Lozier Institute.
[1] https://www.liveaction.org/news/uk-surgeries-babies-spina-bifida/; https://www.bbc.com/news/health-45958980; https://au.news.yahoo.com/unborn-baby-removed-mums-womb-surgery-put-back-043551944.html; https://www.washingtonpost.com/world/2019/02/13/her-unborn-baby-had-birth-defect-so-doctors-performed-surgery-inside-her-womb/?utm_term=.084b6f046752
[2] Adzick, N.S., et al., A randomized trial of prenatal versus postnatal repair of myelomeningocele. N Engl J Med, 2011. 364(11): p. 993-1004
[3] Malloy et al., The Perinatal Revolution. Issues in Law and Medicine. In press.
[4] https://www.bbc.com/news/health-45958980
[5] https://www.theguardian.com/society/2018/dec/22/nhs-to-fund-surgery-on-unborn-babies-with-spina-bifida
[6] Aguilera, S., et al., Prognosis of spina bifida in the era of prenatal diagnosis and termination of pregnancy. Fetal Diagn Ther., 2009. 26(2):68-74.
[7] Johnson, C.Y., et al., Pregnancy termination following prenatal diagnosis of anencephaly or spina bifida: a systematic review of the literature., Birth Defects Res A Clin Mol Teratol. 2012. 94(11): 857–863.
[8] https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30404-0/fulltext
[9] Brown, S.D., et al., Prenatally diagnosed fetal conditions in the age of fetal care: does who counsels matter? Am J Obstet Gynecol 2012;206:409.e1-11.
[10] Antiel, R.M., et al., Specialty-Based Variation in Applying Maternal-Fetal Surgery Trial Evidence. Fetal Diagn Ther. 2017;42(3):210-217
[11] Guon, J., et al., Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. Am J Med Genet, 2014. 164A(2): 308-18; Janvier, A., et al., Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C Semin Med Genet, 2016. 172(3): p. 279-87.
