Published on in CHOP News
October 19, 2011 — A free educational video portraying delicate surgery, that dramatically improves outcomes when performed before birth on fetuses with spina bifida, is available to parents facing this significant pre-birth decision.
Spina bifida is the most common birth defect of the central nervous system, affecting about 1,500 babies born each year in the United States. New research, co-led by The Children’s Hospital of Philadelphia and published in the New England Journal of Medicine earlier this year, found that performing delicate surgery in the womb, months before birth, can substantially improve outcomes for children with this common, disabling birth defect of the spine.
Although the Center for Fetal Diagnosis and Treatment team at Children’s Hospital has been performing fetal surgery for spina bifida for over 13 years, the conclusion and results from The Management of Myelomeningocele Study (MOMS) have now made fetal surgery a standard of care.
Free educational video educates medical professionals and families about spina bifida and surgery to repair it
Children’s Hospital’s Center for Fetal Diagnosis and Treatment has released its eighth free, educational video, Birth of a Breakthrough: Fetal Surgery for Spina Bifida, designed to educate both medical professionals and families coping with this difficult diagnosis, so they can make the best decision possible for their individual situation.
“Although fetal surgery for spina bifida is not a cure, the trial demonstrated scientifically that we can now offer fetal surgery as a standard of care,” said N. Scott Adzick, MD, surgeon-in-chief at The Children’s Hospital of Philadelphia, director of Children’s Hospital’s Center for Fetal Diagnosis and Treatment, and lead author of the MOMS trial. Adzick, who led a team at CHOP that pioneered fetal surgery for this condition and set the stage for the MOMS trial, added, “Now families given a prenatal spina bifida diagnosis have choices and this video, coupled with extensive evaluation and counseling, can help educate both families and medical professionals about these options.”
Birth of a Breakthrough includes information about diagnosis, treatment options, delivery and follow-up care for spina bifida, specifically its most common form, myelomeningocele. Because each case is unique, treatment can range from surgery after birth to open fetal surgery during pregnancy.
Throughout the video, the Center’s multidisciplinary team walks families step-by-step through evaluation, diagnosis, surgery, delivery and follow-up to help them understand and prepare for the experience ahead. In 12 chapters, the video addresses common questions physicians and families ask, including:
- What are spina bifida and myelomeningocele?
- What options are available?
- How does the evaluation process work?
- What are the risks associated with prenatal surgery for spina bifida?
- How does prenatal, or fetal, surgery work?
- What are the benefits of a specialized center?
- What happens after the baby is born?
- What innovations and advances are on the horizon for prenatal repair of spina bifida?
“This video is the eighth in a series of educational DVDs our Center has produced for families and the medical community,” says Lori J. Howell, MS, RN, executive director of the Center for Fetal Diagnosis and Treatment at Children’s Hospital. “As the largest Center of its kind in the world, every day our multidisciplinary team sees a high volume of patients with a range of rare and complicated fetal diagnoses. Our goal is both to educate the public about the latest medical information and also to reassure families that they have support during what can be a very frightening time.”
Video features families of patients successfully treated for myelomeningocele
Several patient families were instrumental in the making of this video, including Mike and Katherine Mulligan from Cincinnati, OH. The Mulligans were treated at Children’s Hospital over 11 years ago in September 2000, when, just 21 weeks into their pregnancy, their unborn son was diagnosed with myelomeningocele.
“After receiving very little hope from our doctor, we researched spina bifida online and discovered the Center for Fetal Diagnosis and Treatment at The Children’s Hospital of Philadelphia,” explained Katherine Mulligan, one of the first women to undergo fetal surgery for the condition.
Led by Adzick, Center team members had pioneered the surgical procedure to repair myelomeningocele before birth and had been performing it in selected patients since 1998. The Children’s Hospital team had found that addressing a spina bifida diagnosis by operating on the baby in the womb, months before birth, could reduce the need to divert fluid from the brain, improve neurologic function and increase the likelihood that a child would be able to walk independently. Those same results were later confirmed by the MOMS trial.
On December 28, 2000, the Mulligans welcomed their baby, Sean, into the world. Weighing a healthy 6 pounds, 7 ounces, Sean had nothing more than a scar where his myelomeningocele had been. “He came out kicking and screaming, so to speak, and he’s been doing that ever since,” Katherine says.
How to obtain the Birth of a Breakthrough DVD
The Birth of a Breakthrough DVD is available free of charge to medical professionals and families on The Children’s Hospital of Philadelphia website or by calling 1-800-IN UTERO (468-8376).
Ashley Moore, Children's Hospital of Philadelphia, 267-426-6071 (office), 267-294-9134 (mobile), firstname.lastname@example.org