by: Stefanie Hengge and Foong-Yen Lim, MD
In February of 2011, Sherri Davis received a phone call that no expectant parent is prepared for. Blood test results showed that at 18 weeks gestation, her son tested positive for spina bifida. What followed was a flurry of additional tests and discussions on Sherri’s qualifications for fetal surgery. Fetal surgery for spina bifida is one of the most remarkable developments in the history of treatment for birth defects where the lesion on a baby’s spine is repaired while the woman is still pregnant, avoiding further progression of the condition. Although life changing, it requires complete commitment from the family, including modified bed rest and frequent doctor’s appointments for mom after the fetal repair surgery. Processing the unexpected path her life was about to take, Sherri states medical professionals began to put her at ease. “I was told to stay as far away from the Internet as possible, but the doctors were always upbeat and positive about the life of my baby, never once mentioning abortion. We were given such a good outlook for life that there was never a doubt in my mind that everything would be okay.”
Learning that she satisfied the qualifications for prenatal surgery, Sherri met with a team at Cincinnati Fetal Center (a collaborative program amongst Cincinnati Children’s Hospital Medical Center, Good Samaritan Hospital, and University of Cincinnati Medical Center) to discuss the benefits and risks to herself and the baby. Describing this meeting as “intimidating, but positive”, Sherri discovered that having surgery would be the best way to prevent further damage to her son’s spine as well as lessen the hydrocephalus that the shift in the hindbrain would cause. Though prematurity was a known risk of the procedure, avoiding brain surgery was all she needed to give the green light.
Describing the surgical procedure as a whirlwind, Sherri does not recall much of what happened due to heavy sedation. She was transported from Cincinnati Children’s Hospital Medical Center where the fetal surgery was performed to the fetal unit at Good Samaritan Hospital, where she recovered for 5 days, until she was considered stable enough to be released to go home. She was ordered to stay on modified bedrest until 37 weeks, when a c-section would be scheduled to deliver her son. But as Sherri was quickly learning, life doesn’t always go according to plan. Within an hour of being home, Sherri began experiencing pains that she soon learned were the beginning of labor. At 9:18pm on March 30, 2011, Jackson Riley entered the world through emergency c-section at 1 pound, 12 ounces.
During his 86 days in the Neonatal Intensive Care Unit (NICU), Jackson required no additional surgeries and the hydrocephalus seen in the womb diminished. Despite a few blood transfusions due to prematurity, Jackson pulled through without fail. Today, he is what Sherri describes as a “vibrant and exceptional 8 year old”. And while no child with spina bifida is without some ongoing medical issues, Jackson continues to excel; walking on his own and never needing a shunt to be placed to drain cerebrospinal fluid from any remaining blockage in the brain, a known benefit of the surgery.
Since closing the lesion in Jackson’s back in 2011, Cincinnati Fetal Center has gone on to perform a total of 53 open fetal MMC surgeries and 33 fetoscopic MMC surgeries. Fetoscopic surgery is a newer procedure using very fine instruments and fetoscope of 2-3 mm in size (0.08-0.12 inch) to reduce the size of the incision in the uterus and subsequent risk of maternal morbidity and prematurity. After fetoscopic surgery, patients are allowed to deliver vaginally at term unless there is any obstetric contraindication. These advancements continue to be groundbreaking in the treatment for birth defects, enriching the lives of those with spina bifida. Though it is not a cure, and is associated with maternal morbidity and preterm delivery, medical professionals at Cincinnati Fetal Center believe that fetal surgery improves some aspects of the birth defect that contribute to a better quality of life in these patients.
Sherri and Jackson are a testament to not only the significance of this medical advancement, but to the importance of attitude as well. When asked how she got through the difficulties of this experience, Sherri accredits the support of her family and her faith. “I was determined that no matter what, he would be living his best life, experiencing everything this life has to offer. My Faith. God will never give us more than we can handle but I was also determined that this would be a positive experience and life. Jackson was wanted and loved before I even knew I was pregnant. I had prayed for this baby before he was even a reality. God is good.”