Related image for article, "Fetal spine surgery for spina bifida prepares Declyn for an active life".

Mighty Blog

Fetal spine surgery for spina bifida prepares Declyn for active life

When Declyn’s mom, Sarah Anderson, went in for her 20-week ultrasound at the Fargo, North Dakota clinic near her home, she noticed it took a lot longer than the tests she’d had during her two previous pregnancies.  Sarah and her husband Ken learned their baby had spina bifida, a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. The clinic referred the Andersons to the Midwest Fetal Care Center, a collaboration of Children’s Minnesota and Allina Health.

Four days later, Sarah and Ken drove to Minneapolis to meet with Dr. Joseph Lillegard, a pediatric surgeon and Dr. Joseph Petronio, a pediatric neurosurgeon, at the Midwest Fetal Care Center. During the evaluation, they were impressed by the amount of time and care that the doctors and their team took in explaining the diagnosis and possible outlook for their son.

They had extensive conversations with their care team and eventually decided to go ahead with open fetal surgery to repair Declyn’s spine. This meant that doctors would make an incision into Sarah’s abdomen and uterus, then pull the baby out partially in order to repair the spina bifida. They would then put the baby back inside, close mom up and let the baby continue to grow inside for the rest of the pregnancy.

At 24 weeks gestation, Dr. Lillegard and Dr. Petronio performed the fetal surgery, along with a team of specialists in maternal fetal medicine, pediatric surgery, anesthesiology (maternal and fetal) and more. The surgery took two hours and Declyn’s prognosis was good.

After eight weeks of bed rest and weekly appointments following the surgery in early October, Declyn was delivered via c-section on Dec. 6 at 33 weeks. He was 3 pounds 4 ounces and his parents were elated to meet him.

Declyn spent 26 days at Children’s Minnesota, two weeks in the neonatal intensive care unit (NICU) and two weeks in the Infant Critical Care unit (ICC) for monitoring. He did so well, he didn’t need oxygen or other interventions. While in the NICU, the family’s Midwest Fetal Care Coordinator, Shelly Wenner, visited them. Her caring support throughout Sarah’s pregnancy and Declyn’s NICU stay helped ease worry and stress.

When his family came to visit, his older sister and brother spent time in the Child Life sibling play area and watching Star Studio, the hospital’s in-house TV station. Sarah, Ken and Declyn’s siblings stayed at Ronald McDonald house in Minneapolis. They even spent the Thanksgiving and Christmas holidays at the hospital. The Ronald McDonald house staff invited each member of the family to select five presents, which were wrapped and waiting outside their door on Christmas day.

While the goal was to go home by Declyn’s Jan. 20 due date, they were able to leave a few weeks early on New Year’s Day — a great start to the new year.

Today, Declyn is 15-months-old and his mom says he’s the happiest baby you’ll ever meet. He’s learning to stand and crawl. Declyn has mobility all the way to his ankles and wears braces that will help him walk.

“I can’t speak highly enough about the doctors and nurses at Midwest Fetal Care Center,” Sarah said. “The team is amazing. I would recommend them to anyone! We are eternally grateful for being given this opportunity to provide the best possible outcome for our son.”

Find out more about the Midwest Fetal Care Center.

Laura Stokes