Kelly Williams is getting another wonderful birthday present this year.
She shares her birthday with her precious son, Duke, and the day he was born was a special gift. “A year later we couldn’t be more thankful at the joy he brings and he is a true blessing,” says Kelly, who looks forward to many more double celebrations.
Kelly and her husband, Chad, count themselves very lucky. The diagnosis of an open neural tube defect, or myelomeningocele, led them on a journey of education, referral, consultations and, ultimately, to open fetal surgery for spina bifida repair.
Spina bifida – a major birth defect involving the spine – occurs when a fetal spine fails to fully form during early pregnancy and is associated with many problems that persist for the entire life of the person affected. Spina bifida occurs in approximately one in every 1,500 live births and is one of the most common birth defects in the United States.
When Kelly became pregnant, the family was living in Hawaii where Chad was stationed in the U.S. Army. After the diagnosis, the couple researched options and learned as much as they could. In the process, they met a physician who had just moved to Hawaii and he suggested they contact the specialists at The Fetal Center at Children’s Memorial Hermann Hospital.
The Williams family finds encouragement at The Fetal Center
“The first person we met when we arrived at The Fetal Center was a sonographer affiliated with the team and she became our hero,” says Kelly. “She performed our first ultrasound there and her professionalism and upbeat spirit gave us instant hope. She had a tremendous positive impact on us.”
The Fetal Center at Children’s Memorial Hermann Hospital, with affiliated physicians from the faculty of McGovern Medical School at UTHealth, is committed to providing patients with detailed information about their child’s diagnosis. Patients are informed about the exact location of the spina bifida lesion and its possible consequences as well as available treatment options, empowering them with the information they need to make the best decision for their family. To educate families about their fetal diagnosis, the specialized team provides comprehensive, multidisciplinary consultations, enhanced by helpful educational materials.
When a patient, such as Kelly, is referred to The Fetal Center, the affiliated team carefully evaluates her as a potential candidate for open fetal repair. All patients have the benefit of extensive two-day counseling with multidisciplinary experts in fetal surgery and spina bifida. The team includes specialists in maternal-fetal medicine, pediatric surgery, pediatric neurosurgery, long-term spina bifida outcomes, neonatology, anesthesiology, social work and Child Life services.
Based on the MOMS clinical trial, funded by the National Institutes of Health, open fetal surgery for spina bifida is now an alternative treatment option for some patients and families. Physicians at Children’s Memorial Hermann Hospital were the first in Texas to conduct open fetal surgery for spina bifida repair.
The Fetal Center is also among the first to report the outcomes of the first group of patients to reach the milestone of their first birthday. “We are pleased that our outcomes closely match those of the MOMS clinical trial,” adds Michael Bebbington, M.D., director of prenatal imaging and fetal diagnosis at The Fetal Center. Infants born with spina bifida are at risk for a range of disorders, such as hydrocephalus, which may require a shunt to relieve pressure inside the skull. Being able to avoid having a shunt inserted by 1 year of age was one of the benefits shown by the MOMS trial.
After Kelly was evaluated by The Fetal Center’s affiliated multidisciplinary team, the lead fetal surgeon on her case, Dr. Bebbington, “assured us that I was a good candidate and his confidence and knowledge were reassuring,” she notes.
“The Williams family is a perfect example of the dedication of parents to the welfare of their child,” says Dr. Bebbington. “Their dedication speaks to all of the wonderful families who go through this surgical process. It continues to amaze me what a mom is willing to go through to try and give her child a better life.”
Kelly underwent surgery in August 2013 and she describes her open fetal surgery as nothing short of a miracle. She stayed in Houston on modified bed rest until Duke was born via C-section when Kelly was 37 ½ weeks pregnant. Duke’s arrival on November 13, 2013, ensured her birthday was extra special.
The parents were overjoyed to bring baby Duke Alexander home a few days before Thanksgiving.
“We were the 11th set of patients to have this specialized surgery at The Fetal Center, having Duke’s myelomeningocele repaired in-utero,” explains Kelly.
“We are forever grateful to Dr. Bebbington and the whole team at The Fetal Center. Because of everyone there, our Duke is defeating all the odds.”
A “happy” Duke continues to make progress
“The value of the surgery is huge,” adds Duke’s father, Chad, “and the benefits for Duke are tangible. For example, every week we see progress with his brain development and his competency levels.”
Sweet-natured Duke “is the happiest, most easy-going baby I have ever seen,” Kelly adds. “He loves being outside and his two older brothers – ages 3 and 4 – make him laugh with their crazy activities.”
“Duke is doing great,” explains Chad. “All the signs point in the right direction and the doctors tell us he will not need a shunt.”
Our physical therapist comes weekly to our house and Duke is making progress in sitting up for longer periods of time,” adds the proud Mom. “We are working on strengthening his leg muscles.”
Chad has been in the U.S. Army for six years, and prior to Hawaii, he was deployed to Afghanistan. He is now stationed in Washington, D.C., where the family enjoys cheering Duke on as he reaches each milestone.
Duke’s progress is testament – in no small measure – to Kelly and Chad’s commitment, patience, love and generosity of spirit. Kelly’s humility and strength shine: “Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.”