Infant is flourishing after undergoing innovative procedure in the womb to correct a neural tube defect.
By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
Two-month-old Cameron Johnson doesn’t know how special he is, but his parents and his doctors at Riley Hospital for Children certainly do.
Cameron, who spent a few weeks in the Simon Family Tower NICU before transitioning to Riley’s new progressive neonatal intensive care unit, is among the growing number of babies who have had lifechanging surgery while still in the womb to correct the defect that causes spina bifida.
Dr. Hiba Mustafa, director of Riley’s fetal surgery program, and Riley neurosurgeon Dr. Jason Chu lead the surgical intervention team for the treatment of myelomeningocele, the most serious type of spina bifida, a neural tube defect where the spinal canal and backbone do not close properly before birth and the spinal cord forms on the outside of the body.
Left untreated, the condition often results in lifelong complications, including hydrocephalus, leg weakness, bowel and bladder dysfunction and learning difficulties.
Cameron’s parents, Rebecca and Lavelle Johnson, traveled quite a distance for the procedure, performed when Rebecca was 25 weeks pregnant. The couple lives in Atlanta, where Rebecca is a nurse in a children’s hospital.
It was her maternal fetal medicine specialist in Georgia who recommended Rebecca come to Riley for the fetal repair surgery, knowing that Rebecca grew up in the Indianapolis area and would benefit from having family close while she waited for the birth of her child.
“It was a no-brainer for me to do it here with family nearby,” Rebecca said as she cuddled with her baby while her husband joined via Facetime. She delivered Cameron at 32 weeks in the Riley Maternity Tower.
Riley is one of only a handful of hospitals in the country that began offering the less-invasive, cutting-edge procedure last year.
“Our center at Riley Hospital for Children is the only one in Indiana offering fetal surgery for myelomeningocele (spina bifida) and the only program in the Midwest performing the most minimally invasive fetoscopic repair,” Dr. Mustafa said.
The innovative technique uses the smallest maternal skin incision, followed by placement of a fetoscope through tiny ports in the uterus, reducing maternal morbidity while providing state-of-the-art fetal care.
“Fetal myelomeningocele repair is one of the most complex procedures in fetal surgery,” said Dr. Chu. “But it is also one of the most rewarding. Our team is dedicated to these families and their children, and we’re here to support them through every step of this journey. Our goal is to give every child the best life they can live; with the benefits of fetal myelomeningocele surgery, we may have been able to change Cameron's life, even before he was born.”
The Johnsons are particularly grateful for the care they and their baby have received because they suffered the loss of their first child as an infant due to a congenital heart defect.
In fact, that’s one reason they learned of Cameron’s diagnosis early because doctors performed an anatomy scan at 16 weeks, rather than 20 weeks, to look for cardiac defects.
“His heart was good, and we can work with the rest of it,” Rebecca said she and her husband decided when they got the results.
Before being discharged from Riley on Friday, Cameron was already showing rapid progress.
“He’s kicking his little legs, and his back looks amazing,” Rebecca said. “The little scar is so small and healed up so well.”
The surgery offers him a 50 percent chance of walking unassisted and decreases the risk of him needing a shunt due to a buildup of spinal fluid, she said.
“It’s crazy what they can do. It’s mind-blowing, like the surgery is for him, but I’m having the surgery too.”
And her baby, with his angelic face, full head of hair and “chill” personality, has flourished under the care of the Riley team.
“They’ve been amazing,” she said. “It was hard being back in the NICU, but it helps that I work in a pediatric hospital on a daily basis, so it’s not as shocking as it is for my husband.”
And, she added, “he had all the nurses wrapped around his little finger down on the NICU.”
Learn more about this advanced surgery here.
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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