Fetal Treatment Options

Parents may receive news during routine ultrasound scans that their baby or babies have a structural defect.  Modern medical and surgical advances have made it possible for some babies to receive life-saving treatment while still inside the womb before they are born.  

Some diagnoses that were previously thought to be life-limiting or life-threatening are now treated before birth, helping babies survive to birth with overall increased quality of life and lifespan.

Fetal surgery has been successful in treating unborn babies for several conditions including myelomeningocele (spina bifida), twin-to-twin transfusion syndrome (TTTS), sacrococcygeal teratoma (SCT), congenital diaphragmatic hernia (CDH), congenital cystic adenomatoid malformations (CCAM), severe kidney obstruction and oligohydramnios, bladder obstruction, and more.1  Amidst the pain and uncertainty of receiving a fetal diagnosis,fetal interventions for some disorders may provide real hope of correcting a structural birth defect before birth.  For example, parents may receive a prenatal diagnosis of spina bifida, a severe disorder in which part of the baby’s spinal cord does not close properly, also known as a neural tube defect.  Depending on the location of the damage, spina bifida can cause neurologic and intellectual impairment, including paralysis.   While surgery in the first few days after birth can help, 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. The first groundbreaking clinical trial for treating spina bifida before birth was so successful that the trial was stopped early, so that treatment was not withheld from babies.2  

Other parents may receive a prenatal diagnosis of twin-to-twin transfusion syndrome (TTTS), a serious and life-threatening condition for both babies caused by abnormal connections in blood flow between identical twins who share one placenta. This leads to an imbalance in blood flow in which the smaller (donor) twin pumps blood to the other, larger (recipient) twin. If left untreated, advanced forms of the disease can be fatal.  This minimally invasive surgery, called fetoscopic laser ablation, uses small, fiber-optic guided instruments called endoscopes to create one small incision to disconnect the shared blood vessels in the placenta between the connecting twins. If performed promptly, fetoscopic laser surgery is the best option for saving both babies, particularly when the disease is identified in its early stages between 15- and 26-weeks’ gestation.3  High volume fetal therapy centers report a higher than 90% survival rate of at least one baby and a higher than 80% survival rate of both babies after fetal surgery to correct TTTS.4 

Some birth defects once considered life-threatening and debilitating are now identified much earlier in gestation, and many can be corrected via in utero surgery at major medical institutions throughout the United States.  Click on this link at the North American Fetal Therapy Network for more information on medical centers in the United States that perform advanced in-utero fetal therapeutic procedures.  Medical centers such as the Center for Fetal Diagnosis and Treatment at the Children’s Hospital of Philadelphia (CHOP) care for many women carrying babies with birth defects.  They provide compelling, visual evidence of the growth and impact of fetal surgery over the years with photos from their annual Fetal Family Reunion; the first fetal surgery patient reunion in 1997 and its most recent one, the 26th, in 2022.  Click HERE to view simple facts about fetal surgery.  Also see this Fact Sheet: The Growth of Maternal-Fetal Medicine and Fetal Care Centers in the United States for more information about the maternal-fetal specialists and medical care centers that diagnose and treat babies before birth.

For fetal abnormalities with no current treatment options before birth, there may be medical treatments and therapies available after the baby is born.  For example, there is no cure for DiGeorge syndrome (22q11.2 deletion syndrome), but surgery after birth may be needed to correct a heart defect or cleft palate.  We encourage you to discuss possible surgical interventions and treatment options available after birth if repair is not possible before birth. 

Sources:

  1. Malloy, C., Chireau Wubbenhorst, M., and Sander Lee, T.  The Perinatal Revolution. Issues in Law and Medicine. 34(1):15-42, 2019
  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. D Magazine.  The surgeon who works on babies before they’re born.  Available at: https://www.dmagazine.com/publications/d-magazine/2018/october/timothy-crombleholme-works-on-babies-before-theyre-born/; L. Lecointre et al., “Fetoscopic Laser Coagulation for Twin–Twin Transfusion Syndrome before 17 Weeks’ Gestation: Laser Data, Complications and Neonatal Outcome,” Ultrasound in Obstetrics & Gynecology 44, no. 3 (2014): 299–303, https://doi.org/10.1002/uog.13375; Baud et al., “Fetoscopic Laser Therapy for Twin-Twin Transfusion Syndrome before 17 and after 26 Weeks’ Gestation.”
  4. Twin-Twin Transfusion Syndrome (TTTS) | Children's Hospital of Philadelphia (chop.edu)