Bravery at its Best

Men and women of our armed forces are often applauded for their bravery. But according to the Dettmar family of Clovis, New Mexico, there is nothing more brave than persevering through a high-risk pregnancy.

Alex and Frances Dettmar needed more courage than ever when their daughter, Olivia, was diagnosed with spina bifida earlier this year. Spina bifida is a spinal cord defect that forms early in a pregnancy, many times before women even know they are pregnant.

“We were stationed in California, and two days before moving to New Mexico, we learned of the possible diagnosis,” Frances said. “We were told to confirm it with a maternal fetal medicine specialist in Lubbock, who strongly recommended that we go to Texas Children’s.”

Texas Children’s is the best option

Frances, who’d already been through two uncomplicated pregnancies, said she was filled with fear and concern. “I asked myself a lot of questions,” she said. “I wondered what I’d done differently with this pregnancy. I wondered what life would look like for my baby. I wondered if we were headed to the right place for care. I wondered about everything because this was a completely new journey for us.”

The family decided to trust their doctor’s recommendation, and they made the trip to Houston for an in-utero spina bifida procedure at Texas Children’s Pavilion for Women.

Three surgeons are needed in a spinal bifida surgery like this — an obstetrician, a neurosurgeon and a general pediatric surgeon — each with a vital and specialized role. Frances’ surgeons were Dr. Michael Belfort, OB/GYN-in-Chief at Texas Children’s Pavilion for Women and Professor and Chair of the Department of Obstetrics and Gynecology at Baylor College of Medicine (Baylor); Dr. Samuel McClugage, a neurosurgeon at Texas Children’s and Assistant Professor of Pediatric Neurosurgery at Baylor; and Dr. Luc Joyeux, a general pediatric surgeon at Texas Children’s and an Instructor at Baylor. During the surgery, the team accesses the uterus and then repairs the baby’s spinal cord defect. To date, the Texas Children’s team has performed 138 fetoscopic spina bifida surgeries.

“Words cannot describe how grateful I am that the surgery was a success,” Frances said. “I recovered in Houston for approximately four weeks, but I wanted to stay longer. I wanted to deliver at Texas Children’s.”

McClugage says that Frances’ request is common among mothers of spina bifida patients. “They have had a successful surgery and they want to stay close to the team that made it happen. However, we support mothers delivering their babies at home, close to their communities and under the care of family doctors.”

Olivia’s arrival

And that’s exactly what the Dettmar family decided to do. They made the drive back to New Mexico, and on May 18, 2022 Frances’ water broke. Olivia was delivered at University Medical Center in Lubbock, Texas, at 34 weeks, joining her sister Mary Colston, age 3 and Elijah, age 1.

Frances said Olivia’s arrival was stressful, as her newborn didn’t cry for five minutes after she was born. She was placed on a continuous positive airway pressure machine — commonly known as a CPAP — and was rushed to the neonatal intensive care unit at the hospital, where she stayed for more than two weeks. “I didn’t see my daughter the first two days of her life,” she said. “In a short period of time, we went through so much.”

McClugage says that it is not uncommon for a successful in utero spina bifida repair to be followed by a challenging delivery and difficult first few months, but ultimately, spina bifida patients can lead happy, healthy lives — as children and as adults.

Olivia is proving to be an example of just that. At nearly six months old, she is growing and developing on schedule. Frances says that her faith in God is what has gotten her through the past few months. Her husband, Alex, is currently stationed three hours away from home at Holloman Air Force Base. They are learning to juggle this new phase of parenting with the help of close family and friends.

Olivia’s future is bright

In terms of what future treatment typically includes, McClugage notes that all spina bifida patients remain under close physician watch throughout their lives. To provide this follow-up care, Texas Children’s operates a multidisciplinary Spina Bifida Program, with specialty services that include orthopedics, neurosurgery, developmental pediatrics, physical therapy and more. Patients who receive the surgery at our hospital can return to our clinic for their follow-up appointments or choose to seek follow-up care elsewhere.

“Life is full for us right now,” Frances said. “With my husband being stationed away from home until January, we are learning to let our village help. We are taking it one day at a time.”

She adds that telling her story also helps. “It brings me joy to tell my story and encourage others who are in this position. Olivia is my miracle baby, and I want other families to know that they can experience miracles, too.”