Infant making great strides after in-womb surgery for Spina Bifida

JEFFERSON CITY, Mo. – There’s been another milestone for 4-month-old Jackson Skain of Jefferson City.

Jackson underwent surgery before his birth. His mother, Joni Reinkemeyer, was 25 weeks pregnant when he was born in late December. For about half of his young life, Jackson had full casts on both legs.

“No more casts. No more!” his mother said to him during a recent doctor visit in St. Louis to have the casts removed.

“He’s lifting his legs! Does that feel good? Are they a lot lighter?” she said to Jackson, who cried but only briefly when the casts were cut off.

The casts worked!

Jackson’s prenatal surgery was for Spina Bifida.

The casts were to prevent clubbed feet.

“He’s going to have wonderful feet that provide him with the ability to stand and advance with walking,” said Dr. Matt Dobbs, a professor of orthopedics with Washington University Medical School in St. Louis. “It’s an exciting development and it’s an important day.”

Jackson’s most important day perhaps came in October, two months before birth.
He had spinal surgery in St. Louis while still in the womb.

The surgery was a first for a medical team from Barnes-Jewish and St. Louis Children’s Hospitals.

“Before we went up to St. Louis and they first said we can have surgery on him before he’s born…I never heard of that. That just seems crazy,” Reinkemeyer said.

Spina Bifida literally means “cleft spine.”

Jackson had the most threatening form. A sac was sticking out of his lower back, exposing his nerve tissue and drawing his brain into his spine, which can lead to severe disabilities. The team put the nerve tissue into Jackson’s spine and closed up the hole in his back through which that sac was protruding.

His parents had to temporarily relocate to St. Louis from Jefferson City for mom and baby’s care from October into early January.

Both of Jackson’s parents work and attend college in Jefferson City. They now return almost weekly to St. Louis for his critical follow-ups.

If that sounds like an ordeal, it may have been their only option.

After St. Louis, the closest hospitals offering this type of surgery were in Minnesota and Colorado.

Jackson’s hitting every milestone in St. Louis.

“You can just see them learning every day, something new. He grips harder, pays more attention to things, follows you around,” said his father, Christopher Skain.

Mom and dad are learning every day, too. On this visit, they practiced putting Jackson in and out of his new leg braces. He will wear them full time for three months, except for bath time. Then he’ll wear them part time when he sleeps for up to 4 years

It seems a welcome task for parents who loved their son long before they met him – and for the little fighter who’s making their dreams come true.

“He is a champ. He takes this well,” Dr. Dobbs said. “It’s a commitment from the family. The old saying goes ‘It takes a village.’ There’s no shortage of that here. Things are looking good. His feet are fully corrected.”

It’s an outlook perhaps not possible 10-15 years ago, he said.

“I think a big dream is we hope he’ll be able to walk and run and do that kind of stuff…but he’s perfect … whatever he’ll do,” Reinkemeyer said.

According to the National Institute of Neurological Disorders and Stroke, Spina bifida affects 1,500 to 2,000 of the more than four million babies born in the U.S. each year. An estimated 166,000 individuals with spina bifida live in the United States.

According to the Spina Bifida Association, most children with Spina Bifida do well in school, and many participate in sports. Because of today’s medicine, about 90 percent of babies born with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and do other fun activities.