Jacksonville baby with spina bifida who had in-utero surgery born healthy at Baptist Medical Center Jacksonville
Mom is pediatric physical therapist at Wolfson Children’s Hospital
May 13, 2013 | Jacksonville, FL
As a pediatric physical therapist with Wolfson Children’s Rehabilitation Services, Kristin Diehl has worked for five years with kids of all ages who have spina bifida and other congenital conditions. But it didn’t prepare her for the shock she experienced when her own baby was diagnosed with spina bifida during a routine ultrasound in the 18th week of her pregnancy. Spina bifida, one of the most common birth defects, is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube.
“My OB saw evidence of an Arnold’s Chiari malformation, which I knew is associated with spina bifida,” remembers Kristin. “She sent me to Regional Obstetric Consultants (a high-risk OB group) at Baptist Jacksonville for a higher level ultrasound, where they confirmed my baby did have spina bifida.”
She adds, “Everyone plans to have the perfect child, and since I had a healthy twin pregnacy and no family history of genetic conditions such as spina bifida, I was terrified, in part because I know too much about this condition.”
The high-risk OB talked to Kristin and her husband about options, which included performing a surgical repair of the baby’s spine within 24-48 hours of birth or an in-utero surgical repair. After researching their options, Kristin and her family decided to have the in-utero procedure at Vanderbilt University Medical Center.
Fetal surgery was pioneered at Vanderbilt in 1997, one of only a few medical centers in the country to perform this procedure for a serious form of spina bifida called myelomemingocele while the baby is still in the uterus. The findings of MOMS (Management of Myelomeningocele Study) was published in the Feb. 9 online issue of the New England Journal of Medicine and showed that babies who have this type of surgery while still in the uterus experience a reduction in potentially life-threatening hydrocephalus and have an increased ability to walk.
At 22 weeks, Kristin and her husband flew to Tennessee on a Thursday for a consult at Vanderbilt with a team of phhsicians involved in the care of the mother and baby during this procedure. The following Tuesday, Kristin had fetal surgery, performed by Noel Tulipan, MD, director of pediatric neurosurgery at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
“They put me under general anesthesia and cut into my uterus with a vertical incision along my abdomen,” explains Kristin. “They removed my uterus and set it upon my stomach, then ‘floated the baby to the top,and made an incision just big enough so that all they could see of the baby was the defect. Dr. Tulipan surgically closed the opening in the spine and the high-risk OB closed the incision in my uterus and set it back in place, and then another surgeon closed my abdominal incision.”
Kristin was hospitalized at Vanderbilt for a week, receiving medications to prevent premature labor, before going home to continue her pregnancy on full bed rest. “Once I recovered from surgery, my pregnancy was normal,” she says.
Kristin delivered 6 lb., 11 oz., Easton Diehl at Baptist Medical Center Jacksonville on Thursday, May 2, at 2:22 pm by scheduled C-section at 37 weeks. The baby boy was only in Wolfson Children’s Newborn Intensive Care Unit a total of 36 hours, primarily to have testing and to be evaluated by pediatric neurosurgeon Alexandra Beier, DO; pediatric orthopaedic surgeon Eric Loveless, MD; pediatric urologist Michael Erhard, MD, and neonatologist William Driscoll, MD.
“If Easton had surgery after birth, he would’ve been in the NICU for weeks recovering,” said Kristin. “Dr. Beier said she was thrilled at how well Easton was doing. Easton’s doctors at Wolfson Children’s Hospital consulted with the doctors at Vanderbilt to make sure they were caring for him the way Vanderbilt would have following fetal surgery. That kind of care and collaboration made this Mommy feel much better!”
Kristin said doctors expect Easton will have delays due to his spina bifida since the condition can affect cognitive and motor development. She already knows Easton will receive his physical therapy from one of her colleagues at Wolfson Children’s Rehab.
“He has some orthopaedic concerns, including a dislocated left hip and limited active movement of his feet, but everything so far looks fabulous that he will have as good an outcome as possible,” says Kristin. “I am so glad to have Wolfson Children’s Hospital near home so that Easton will be followed by outstanding pediatric physician specialists and rehabilitation therapists like my co-workers. That gives me a lot of peace of mind.”