When Tiersa Cross was only 24 weeks pregnant, she underwent a surgery that positively impacted her baby’s life.
Cross was referred to the Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment, when a prenatal screening test determined that her baby girl had spina bifida — a common birth defect that affects about 1,500 babies a year in the United States.
Spina bifida is a defect in which the backbone and spinal canal do not close before birth. The birth defect could cause partial or complete paralysis of the newborn’s legs, loss of bladder or bowel control, weakness of the hips and legs or feet and build up of fluid in the brain.
On October 19, Cross and her baby Madisyn Cruickshank underwent surgery at CHOP.
“They said that if I didn’t get the surgery, her chances of being able to walk would be slim to none. Closing that hole in her back was really important at that time, for her to be able to walk and also to keep fluid from retaining in her brain,” says the resident of Norristown.
“I just wanted to let her have the best life possible. I was just really looking out for her.”
While she was aware of the risk that her baby could possibly be born prematurely, Cross was more concerned about the potential outcome of the surgery.
Madisyn was born January 18 in CHOP’s Garbose Family Special Delivery Unit. Since her birth, she’s returned to the hospital every week for follow-up visits with her doctors.
“She’s doing really well. Her legs are moving. She has full bladder and bowel control,” Cross says of the baby.
Cross also noted that Madisyn doesn’t need a shunt — a surgically implanted tube that drains fluid from the brain.
“We’re optimistic that the operation [she had] before birth will help that baby, but obviously we need to do the long-term follow up. I think that it will end up being a good result,” Dr. Scott Adzick, CHOP’s surgeon-in-chief and director of the Center for Fetal Diagnosis and Treatment says of Madisyn’s surgery.
The surgical highlight comes on the one-year anniversary of a CHOP-led groundbreaking national study published in the New England Journal of Medicine, which found that performing delicate surgery in the womb could substantially improve outcomes for children with spina bifida. The Management of Myelomeningocele Study (MOMS) trial showed that surgery reduced the need to divert fluid from the brain, improved mobility and the chances that the child will be able to walk independently. CHOP worked with Vanderbilt University and the University of California San Francisco to conduct the National Institutes of Health-funded trial.
Adzick says the concept of fetal surgery arose approximately 30 years ago out of frustration by doctors who realized that they couldn’t treat the damage done to babies’ organs before birth.
After undergoing the surgical procedure, the baby’s mother is monitored very closely.
“With fetal surgery as we do it now, there is a substantial risk of pre-term birth,” said Adzick, noting that a study showed that babies who undergo the procedure were born approximately three weeks early.
Adzick said mothers who undergo this operation need to understand that the procedure leaves a scar on the uterus that can rupture during subsequent pregnancies. With that in mind, mothers who undergo this surgery must deliver their babies by Cesarean section.
According to Adzick, this year the Center for Fetal Diagnosis and Treatment will evaluate approximately 1,200 mothers from around the world who are carrying babies with birth defects.
The Children’s Hospital of Philadelphia has marked a significant milestone.
Eighteen years after opening its Center for Fetal Diagnosis and Treatment, CHOP is celebrating the birth of its 1000th fetal surgery patient.
“The 1,000th operation on babies before birth is a big milestone for our team and it takes a multidisciplinary team to do this sort of work, a very special team which we’ve honed over the last 18 years at CHOP,” said Dr. N. Scott Adzick, who leads the Center for Fetal Diagnosis and Treatment.
According to CHOP officials, approximately 4,000 fetal surgeries have been done worldwide.
The 1000th surgery was a complex open surgery on a mother whose fetus was diagnosed with spina bifida.
Jackie Oberio was just 19 weeks pregnant when she and her husband learned that their unborn daughter had myelomeningocele, the most several form of spina bifida, a condition in which part of the developing spine fails to close properly.
After speaking with several local specialists near their home in Baltimore, Md., many of which advised them to terminate, the Oberio’s ended up coming to CHOP in February.
“The doctors at CHOP went over what would happen if we had the surgery, what would happen if we didn’t do the surgery, what happens if the baby is born preterm, what happens if the baby needs a shunt, what was going to happen to me,” Oberio said.
“Every little thing that could happen they went through in detail five times, helped with questions and emotionally supported us.”
Oberio qualified for the surgery and on March 6, surgeons successfully closed the opening in her unborn baby’s spine. For the next two and a half months, Philadelphia became Jackie’s home, where she was restricted to bed rest, while her husband Gideon traveled back and forth to Baltimore for work.
The Oberio’s baby, Audrey Rose was born May 28 in CHOP’s Garbose Family Special Delivery Unit. She weighed a healthy five pounds, eight ounces and had nothing more than a scar where her spina bifida had been. Audrey Rose is doing well and is expected to head home in the next week or so.
“We were told originally when we first got diagnosed that our baby would probably be in a wheelchair and that could still happen later down the road. But right now she’s moving her toes and she’s not showing that’s she’s paralyzed from the waist down like we thought. There is already improvement with swelling in her brain that we thought was going to be a problem, so far it’s okay,” Oberio says of her daughter’s progress.
CHOP’s medical professionals will have to monitor Audrey Rose’s progress overtime.
“We have to have our guard up a little bit and follow the baby and make sure that she doesn’t have any problems, but things so far are looking very good,” said Adzick.
The team led by Adzick pioneered a surgical procedure to repair spina bifida before birth and have been performing it at CHOP since 1998. The team found that addressing spina bifida 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.
Since its inception in 1995, the Center for Fetal Diagnosis and Treatment has evaluated more than 15,000 women from throughout the United States and 50 countries whose babies had prenatally diagnosed birth defects.
“In the terms of fetal surgery, when you company 1,000 surgeries to 15,000 mothers you can tell that it’s rare in mothers carrying babies with birth defects. Most birth defects don’t require surgery before birth. Most birth defects require delivery in a special unit at CHOP after birth,” Adzick pointed out.
Oberio encourages other parents who are facing a similar situation to become informed about their possible options.
“We want people to look into it as a possibility as opposed to jumping to conclusions to make sure that they get all the information. That is probably the smartest thing that we did is to go to multiple locations and get the consults. You have to go overboard for your kids,” Oberio added.