“When I heard that diagnosis, I felt like the wind had just been knocked out of me,” Jean said. “I had heard of spina bifida, but honestly, I could not have told you what that meant. A whirlwind of questions went through my head … ‘What does it mean? How will she be? Will she walk? Will she have cognitive issues?’ I was afraid for our baby.”
Early on, the McPhersons learned there are primarily two options to treat spina bifida—leading-edge fetal surgery to close the opening in the baby’s spine before birth; or traditional surgical repair after delivery.
According to research, results from fetal spina bifida surgery are much better than results from traditional surgical repair after birth. In fact, fetal surgery greatly reduces the risk that the infant may need a shunt to drain fluid away from the brain, caused by hydrocephalus. It also has been shown to preserve neurological and leg function. The only catch? Fetal surgery is offered at just a handful of hospitals across the nation.
“I was 20 weeks pregnant, and the fetal surgery has to be performed by 25 ½ weeks,” Jean explained. “We didn’t have any time to waste.”
Because Jean knew long term their baby might need treatment and follow-up care, she scheduled an appointment at Children’s Mercy where the couple consulted the experts in the Elizabeth J. Ferrell Fetal Health Center.
“We wanted to know what our options were and to better understand the diagnosis,” Jean said, “but at that point, Children’s Mercy wasn’t really on our radar screen to perform the surgery.”
Fortunately, during their consultation, Emanuel “Mike” Vlastos, MD, fetal surgeon, joined their appointment.
A highly experienced fetal surgeon, Dr. Vlastos has expanded the Children’s Mercy fetal surgery program to include open myelomeningocele repair and other advanced in-utero procedures.
“Immediately, we could tell that Dr. Vlastos has a passion for fetal surgery and tremendous compassion for his patients,” Jean said. “He carefully laid everything out for us, explaining the pros and cons of fetal surgery versus postnatal surgical closure.”
As the McPhersons left the hospital, Jean said she and her husband had an “ah-ha” moment.
“We walked out of Children’s Mercy very confident in Dr. Vlastos’outcomes,” Jean said.
“To us, the benefits of fetal surgery were clear. We decided if we were candidates, we wanted the fetal surgical closure, and we wanted Dr. Vlastos to perform it. We were confident in his skills and in Children’s Mercy.”
At 25 ½ weeks of gestation, Dr. Vlastos, along with Paul Grabb, MD, pediatric neurosurgeon, and the fetal surgery team, opened Jean’s uterus to perform this delicate operation. With the baby still in the womb, the doctors exposed the baby’s back, surgically closing the opening in her spine, then returning her to Jean’s uterus for the remainder of the pregnancy.
The surgery went very well for mother and daughter. After only four days in the Fetal Health Center, Jean went home where she was placed on modified bedrest for the next two weeks. Gradually, she eased her way back to her normal routine.
“Every time we hit a developmental milestone, we felt a little more at ease,” Jean said. Finally, at 34 weeks of gestation, Jean and Brendan knew their baby had reached all the major developmental milestones necessary to be born healthy.
“Each check-up had been good, and it looked like she was developing just as expected,” Jean said. Even so, when the experienced mom’s water broke at 36 weeks of gestation, she was nervous.
“All my other deliveries were textbook, and this was my first C-section,” Jean said. “I didn’t know what to expect.”
Thankfully, Dr. Vlastos did. He expertly delivered 7-pound, 7-ounce, Mary Kate, then handed her off to the neonatal delivery care unit for a thorough check.
“When they told us everything looked fine and that her surgical repair had already healed, we breathed a huge sigh of relief, and said a prayer of thanks,” Jean said.” We feel like fetal surgery gave her a great start—the best chance for a good prognosis long term.”
After just a day and a half in the hospital’s Neonatal Intensive Care Unit, Mary Kate was transferred to the Fetal Health Center to share a room with her mom.
“From there on out, the experience was just like it was with my other babies”, Jean said. “Because her incision had already healed, I was able to hold and cuddle her. Mary Kate was even dismissed from the hospital before I was,” Jean said. “Everything went very smoothly.
Healthy and at Home
At 3 months old, Mary Kate is smiling and cooing.
“She’s a very happy baby with lots of brown hair, just like her mom and her siblings,” Jean said.
Her check-ups to date show no signs of hydrocephalus, and she has good movement all the way down to her toes. Mary Kate will be followed closely this first year to be certain she remains healthy, and she’ll have some physical therapy to strengthen her leg muscles.
“We say all the time if we could have scripted it, this is the way it would have gone,” Jean said. “We wanted to be sure we made the right decision for Mary Kate and for her long-term benefit, not just because it was more convenient to have the surgery done here,” Jean said.
“We felt confident and comfortable that Children’s Mercy was the right place for her care. It was just an added bonus that it was only 10 minutes from our home,” she said.
“That personal, family feel at the Fetal Health Center was very nice and different from my prior birthing experiences at other hospitals,” she added.
Jean’s advice to other moms who might be hearing that same frightening diagnosis of spina bifida is, “Take a deep breath. Everything is going to be okay. I know this all seems overwhelming, but it’s more manageable than you think!