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Update on Stephen 

As a mother with spina bifida, Courtnie saw her son’s future flash before her eyes when the sonographer told her that he might be born with the same diagnosis. “I was devastated. The thought of something being ‘wrong’ with our baby was heart breaking,” says Courtnie. Soon after her doctor confirmed the diagnosis, Courtnie and her husband Adam learned the details of fetal repair surgery for myelomeningocele (the most severe form of spina bifida).

The surgery can help improve the baby’s chances of walking and can decrease the need for a brain shunt “I had heard about this procedure before but never thought I’d be the one faced with the decision to have it or not,” she recalls. They decided surgery was the best option for their son, so they left their jobs and home in northern Missouri, hoping to give their son the best future possible.

Following an initial visit to another center, they contacted the SSM Health St. Louis Fetal Care Institute for a second opinion. “Time was of the essence, as I had to have the surgery within a month or it would be too late,” says Courtnie. Within 48 hours, Courtnie and Adam were in St. Louis meeting with the comprehensive team of experts at the St. Louis Fetal Care Institute.

Every mom and baby has a unique situation, and this was no different. The medical had to look at the whole picture to determine if fetal surgery was an option for this family.

The MOMS (Management of Myelomeningocele) Trial provided inclusion and exclusion criteria for fetal myelomeningocele surgery that were used on hundreds of patients during the trial, They help provide guidance in keeping mothers and their babies safe. Courtnie and her son were fully eligible under the criteria, except for one area, “other medical condition of risk to the mother.”

The team at the St. Louis Fetal Care Institute conducted a full review of Courtnie’s medical history and current condition and that of her son. Then, she and her husband underwent counseling to fully explain the potential risks of the surgery. Courtnie’s spina bifida put her at a higher risk of pre-term delivery, urinary tract infections, and a chance that an epidural would not be fully effective.

In addition, the case was reviewed by the Scientific Review Board, which includes experts from SSM Health Cardinal Glennon Children’s Hospital, SSM Health St. Mary’s Hospital - St. Louis and St. Louis University School of Medicine. Following a full review of Courtnie’s case, the team determined that she and her family should be given the option to move forward with the fetal surgery.

“After nearly a week, the Pediatric Neurosurgeon gave me a call and said that he’d like to offer us the opportunity for fetal surgery,” says Courtnie.

On June 3, 2013, Courtnie and her son had the fetal repair surgery, with no complications. “The Fetal Care Institute staff continued to show such compassion towards my family, understanding that what we were going through was an exciting yet nerve-racking time. They were so reassuring,” says Courtnie.

Following a short stay in St. Louis, the team released Courtnie to go home for the remainder of her pregnancy, where she stayed on modified bed rest until August 22, 2013. Stephen was delivered via a scheduled cesarean section in Kansas City, near their home. “He couldn’t have looked more perfect to us,” says Courtnie.

Stephen is rapidly approaching his first birthday. “He has adorable blue eyes and a smile that can light up any room. He rolls around and scoots backward to get around,” says Courtnie. He is monitored by the Special Care Clinic and neurology team at Children’s Mercy Hospital in Kansas City, and has physical therapy through Missouri First Steps.

“This experience has not only touched the lives of my family but also my friends, church, community and complete strangers. I learned a great deal from this experience but what I gained the most was more faith. Faith that God provides for all my needs, in part through loving and caring people like those at the Fetal Care Institute,” says Courtnie.

The St. Louis Fetal Care Institute is one of the most experienced fetal myelomeningocele repair centers in the country and was one of the first to offer the procedure following the release of the MOMS Trial results in February 2011. After more than 50 surgeries, the St. Louis Fetal Care Institute’s results mirror those of the MOMS Trial.

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