When Declyn was diagnosed with spina bifida before birth, his prognosis was not good. Doctors told his parents that he would likely struggle to walk on his own, may need a shunt to treat hydrocephalus, and could have major problems with bladder and bowel function. Today, Declyn is 16 months old and the happiest baby you’ll ever meet. He’s learning to stand and crawl, and hopefully soon, he will be walking.
Sarah and Ken looked forward to their 20-week anatomy ultrasound, just as they had during their first two pregnancies. However, the Kindred, North Dakota couple quickly knew something wasn’t right when the appointment took longer than usual and they were asked to return the following day to meet with a maternal fetal medicine specialist. After additional tests, they learned their baby had myelomeningocele (MMC), the most common and severe form of spina bifida. Spina bifida is a birth defect in which an area of the spinal column doesn’t form properly, leaving an opening in the back. It can cause paralysis, bladder and bowel dysfunction and cognitive impairments.
Doctors referred Sarah and Ken to experts at the Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health, to explore an option that offered hope: fetal surgery. Fetal surgery for spina bifida is a relatively new and extremely complex procedure, but one that can help to reduce damage to the spinal cord, increase the likelihood that a child will be able to walk and decrease the need for a shunt to drain excess fluid from the head.
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, to see if they qualified for fetal surgery. During the evaluation, they were impressed by the amount of time and care that the team took in explaining the diagnosis and possible outlook for their son. Through extensive conversations with their multidisciplinary care team, including surgeons, maternal fetal medicine specialists, genetic counselors, social workers and others, Sarah and Ken learned they were candidates for fetal surgery and decided to go ahead with open fetal surgery to repair Declyn’s spine.
Declyn’s fetal surgery
At 24 weeks, surgeons performed the fetal surgery, repairing the opening in Declyn’s spine while he was still in the womb. The surgery was a success, and Sarah and Ken remained in Minneapolis for 8 weeks of bedrest and weekly follow-up appointments. On December 6, 2017, Declyn was delivered via a cesarean delivery, weighing 3 pounds 4 ounces. The results of the surgery were evident: Declyn did not need a shunt and the team was hopeful he would walk. He spent 26 days at Children’s Minnesota, 2 weeks in the Neonatal Intensive Care Unit (NICU) and 2 weeks in the Infant Care Center (ICC) for monitoring before heading home to North Dakota with his parents, brother and sister.
Today, Declyn is 16 months old and is making great progress. He is learning to stand and crawl, and is constantly trying to keep up with his two older siblings. Declyn has mobility all the way to his ankles and wears braces that will help him to walk.
“I can’t speak highly enough about the doctors and nurses at Midwest Fetal Care Center,” says Sarah when reflecting on their experiences. “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.”