16-month-old with spina bifida makes “remarkable” progress

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Like most moms, Paige Smith bonded with her son, Zachariah, before he was even born. Now 16 months old, the toddler has her wrapped around his little finger, while she has him wrapped around her arm – tattoo style.

Smith recently got the ink on her arm to celebrate her son and Spina Bifida Awareness Month (October).

Zach was diagnosed with spina bifida (a neural tube defect where the spinal canal and backbone do not close properly and the spinal cord forms outside the body) in utero during his mom’s 20-week anatomy scan. He (and his mom) underwent surgery a few weeks later with maternal fetal medicine surgeon Dr. Hiba Mustafa and pediatric neurosurgeon Dr. Jason Chu.

Riley is one of only a handful of hospitals in the country that began offering the less-invasive, cutting-edge procedure last year that corrects the defect before birth, increasing the chances that the child will live a normal life, including the ability to walk.

“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 in an earlier interview.

While Zach has had respiratory problems and a couple of setbacks since his premature birth last year, a shunt helps drain excess fluid from his brain, and a G-tube supports his nutritional needs. Paige and her husband, Cameron Smith, are excited to see his growth and development, and they give much credit to the Riley team.

They see many specialists as part of Riley’s spina bifida clinic, including pediatric neurosurgery, urology, orthopedics, gastroenterology, developmental pediatrics, physical medicine/rehabilitation and social services.

“Dr. Chu is amazing,” Paige said. “I’ve been following with him since I was pregnant with Zach, and I recommend him to anyone if they need a neurosurgeon. He listens very carefully to questions and concerns. He’s just always been there for Zach.”

It’s hard to take your eyes off the little guy with the gorgeous head of blond curls as he grins and babbles while sitting against his mom on the floor.

He tracks every moment his big sis Rosie makes in the room as she bounces from the couch to the floor and back again. She helps him grab hold of toys and is attentive to his needs.

“He’s a happy baby,” Paige said. “He has progressed a lot in the past year.”

Dr. Chu agrees, saying Zach has come “a remarkably long way.”

“We are so proud of Zach, Paige and Cameron’s incredible fetal myelomeningocele journey,” the surgeon added. “From infancy to adulthood, our multidisciplinary spina bifida clinic is honored to provide the personalized and specialized care for Zach to continue to thrive.”

Zach gets therapy at home through Riley’s First Steps program. In the beginning, therapists focused on head control, a skill he has mastered, his mom said proudly.

“It’s like he woke up one day and decided, ‘I’m gonna hold my head up.’ So now, we’re working on core muscles so he can sit up on his own,” she said.

He doesn’t crawl yet, but his parents hope that’s just a matter of time. Just as they hope he will be able to walk someday.

“He is developmentally behind, but he’s making so much progress. Doctors think he has a shot at walking,” Paige said.

That last bit of information was welcome news to both parents. They know things can change, but they are giving him the best shot they can with therapy, love and regular visits to Riley.

Recently, Zach was cleared to be on room air during the day, so his parents check his oxygen levels regularly. He still gets oxygen support at night, but they hope to wean that back in time.

Meanwhile, he is building his vocabulary, Cameron said.

“He knows his name, and he says hi, dada, mama. It’s like he learns a new word every week.”

Zach, who weighed just 2 pounds, 12 ounces at birth, now is a chunky 19 pounds.

“He takes after me,” his dad said with a laugh.

If they had to pick one word to describe their little boy, it’s easy, they said.

“He’s amazing.”