Kristi Brown’s first pregnancy had been going even better than she hoped. Her medical appointments had all delivered good news. She and her husband, William, were happily preparing the baby’s room, all the while sharing their excitement with friends and loved ones.
But at week 20, an ultrasound revealed unexpected news. Her baby had spina bifida. For Kristi, it was the last thing she ever thought she’d hear.
“Initially, my husband and I were shocked and scared. Obviously, the diagnosis of spina bifida is never one any parent wants to have,” recalls Kristi. “But we knew we had the right people at Michigan Medicine. We were immediately greeted with facts, options, solutions, and always a positive outlook. We always had a team by our side.”
With a disease as severe as spina bifida, the Browns relied on Michigan Medicine to help them understand the best option for their baby. They never expected to hear a solution as advanced as the one they were told.
“We discussed the diagnosis of spina bifida and the options available to their family, including surgical repair on the baby while he was in the uterus,” says Deborah Berman, M.D., a maternal-fetal medicine specialist at Von Voigtlander Women’s Hospital. “It would allow our team to close the defect in utero, giving him the possibility of fewer lifelong complications and procedures related to spina bifida. Since we specialize in treating the rarest conditions, we have the technology, the expertise, and an amazing fetal therapy team to do what few other hospitals can.”
Although she works in the health care field herself, Kristi had never even heard of such a unique surgical option.
She remembers, “The doctors laid it all out for us—the studies and the data—and made me feel no pressure on what to do. I told them if we can give our child a better life, then that’s what we want to do.”
Just three weeks after the diagnosis and at 23 weeks pregnant, Michigan Medicine performed Kristi’s fetal surgery. Incredibly, this meant they exposed the baby’s back and repaired it. Kristi then continued the pregnancy under the team’s close watch. At 35 weeks, she delivered her baby, William.
While the surgery was a success, William’s complications from spina bifida required immediate attention. And as leaders in neonatology, C.S. Mott Children’s Hospital was ready. “Our neonatology team is nationally recognized for their remarkable care for newborns with complex needs,” says Dr. Berman. “We have the staff and knowledge to handle the multiple medical needs these babies will have.”
William spent his first six months in and outside of Mott’s neonatal intensive care unit (NICU), where doctors, nurses and specialists from every field stepped in to deliver essential care.
“William had breathing problems, so the neurosurgery team was ready to help. We had a physical therapist, an ear, nose and throat doctor and more. They all worked together, gave us support and ultimately gave us the best solutions possible. Nurses also showed us how to do feeding and basically taught me how to be a mom of a child with special needs,” recounts Kristi.
And while the transition to get William home was challenging, it wasn’t long before he was thriving.
“I won’t kid you, this changed our lives completely,” Kristi says. “We brought a lot of equipment home, but it was so worth it. William gained a pound in a week and became a different kid. He wasn’t struggling anymore. He eventually started walking and talking.”
At nearly 3 years old, William is doing well, walking both with and without his walker. Now in preschool, he loves being around peers and hopes to be ready for kindergarten when it’s time.
“We have since had a second pregnancy,” says a smiling Kristi. “Dr. Berman and her team took special care of me during this pregnancy because of my previous in utero surgery. We welcomed baby Owen to our family, and William is the most loving big brother you could ever imagine. Seeing the two of them together is a dream come true.”
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