Spina Bifida Breakthrough

Experts at The Children's Hospital of Philadelphia (CHOP) Center for Fetal Diagnosis and Treatment co-led a new landmark study showing that fetal surgery for spina bifida greatly reduces the need to divert fluid from the brain, improves mobility and improves the chances that a child will be able to walk independently.


Spina Bifida Breakthrough

N. Scott Adzick, MD: For the first time in the history of mankind, outside of postnatal repair of myelomeningocele, we have a new way to offer hope to the family and to the child with prenatally diagnosed spina bifida.

Leslie Sutton, MD: Early studies that we did suggested that fetal surgery might be beneficial, but to prove it, we had to do a randomized prospective clinical trial.

N. Scott Adzick, MD: The MOMS trial started in 2003. And it was a head-to-head  comparison between repair of myelomeningocele after birth to repair of myelomeningocele before birth.

Leslie Sutton, MD: And what the MOMS trial has basically showed us is that the fetal surgery group has done significantly better in virtually every way compared  to conventional treatment.

Lori J. Howell, RN: So for the first time ever in fetal surgery, we now have the gold standard, or a randomized prospective trial, to give evidence,  to give proof to families, our colleagues, our peers, that fetal surgery is more effective than surgery after birth.

Mark Johnson, MD: The results of the MOMS trial were very, very close to the results that we found in the group of patients that we performed fetal surgery on before  the start of the MOMS trial.

N. Scott Adzick, MD: In terms of decreased need for a shunt, which is a big deal, in terms of better motor performance, and more likely ability to be able to walk, which is what you really want.

Lori J. Howell, RN: For years spina bifida  has been a problem you deal with after birth. You get what you get, and you make the best of it. Now with fetal surgery, you're able to look at it in a different light. Look at it in a positive light. And see the changes that have occurred and that is amazing, and it's really due to our incredible team's effort.

N. Scott Adzick, MD: It's very gratifying to take an idea nearly 20 years ago and sort of run with it. Test it experimentally, and then to cautiously offer a new form of therapy to families with the hope that  there would be benefit.

Mark Johnson, MD: The hope of potentially better long-term outcomes, decreased disabilities, improved quality of life.

Lori J. Howell, RN: That's what keeping me going. That not only is the science there, but the ability to support families on that journey is there, and as a nurse, you get to be involved with both.

Leslie Sutton, MD: Honestly, this is the neatest thing I've ever been involved in in my entire professional life.

Mark Johnson, MD: A place like CHOP has such depth of expertise.

Lori J. Howell, RN: To be involved with such a committed, passionate team to find the answers  is really a privilege.

Mark Johnson, MD: It's all really focused on, "what can we do to make children's lives better?"

N. Scott Adzick, MD: You begin with a concept  and you end up with hope, hope for families, hope for mothers who are carrying babies with myelomeningocele, hope for those kids themselves, of course.

Topics Covered: Fetal Surgery for Spina Bifida (Myelomeningocele, MMC)

Related Centers and Programs: Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment

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