Carter’s Michigan Answer: The state’s first spina bifida fetal surgery

On October 10, 2020, Carter Hilton celebrated his sixth birthday by doing what he loves most: running around his backyard, dancing with his younger brother, and being chased throughout the house by his mom.

It helps that Carter is a naturally exuberant child. It also helps that Michigan Medicine performed the first in-womb spina bifida surgery in Michigan nearly four months before Carter was born. 

Unexpected News. An Incredible Outcome.

Kasey and Mike Hilton are no strangers to the University of Michigan. Both graduated from the university between 2007 and 2011. Naturally, it came as no surprise that they would want their first child, Carter, to be born at Michigan Medicine. 

At the 20-week ultrasound, however, their hopes of having a routine pregnancy and birth came to an abrupt halt. Imaging revealed that Carter had a spinal cord defect called spina bifida, a condition that ranges in level of severity and has the ability to render a child unable to walk or have normal bowel and bladder function.

While the solution for this delicate condition has always been surgery outside of the womb, Michigan Medicine had a different answer – surgery in the womb. Even though this revolutionary surgery had not yet been performed in the state of Michigan, it had been performed in other hospitals around the country. So Michigan Medicine was confident they could deliver the same success for Carter. 

“When Dr. Treadwell told me I would be their first case, it was definitely a little nerve-wracking, but we knew we had to try it,” Kasey says. “If this surgery could give Carter a better chance of having a better outcome, then that’s what we were going to do.”

Less than three weeks later, the surgery proved successful at repairing Carter’s spine, making him the first baby in Michigan to undergo a specialized fetal surgery to treat spina bifida.

And nearly four months later, Kasey successfully gave birth to Carter.

While fetal surgery did not eliminate Carter’s spina bifida, it dramatically improved his mobility and other essential bodily functions. Carter surprised everyone when he started walking before age two, especially since spina bifida impacts everyone differently.

“We were shocked. It was so much earlier than we had expected. His legs are so strong,” Kasey says. “But once he started, he never stopped.”

Still, Carter uses braces to support his legs throughout the day. When he was two months old, he had brain surgery to have a shunt placed to help relieve the excess fluid (hydrocephalus) in his ventricles, which is common for children with spina bifida who have lifelong impairments requiring surgeries and physical management.

Carter has had eight surgeries since birth. The most recent one was in March, to repair a portion of his leg to correct tibial torsion—a common complication of spina bifida—and allow for greater mobility. But nothing has ever stopped him from enjoying an active childhood. 

“We didn’t know if he would ever be able to walk,” Kasey says. “But he proved us wrong. Now we have a hard time keeping up with him.”

Since Carter’s case in 2014, Michigan Medicine has performed nearly 30 similar surgeries that aim to improve long-term outcomes for children with spina bifida.

“We have continued offering this procedure because of the benefits we are seeing for our patients,” says Marjorie Treadwell, M.D., director of the Michigan Medicine Fetal Diagnosis and Treatment Center and a high-risk maternal fetal medicine physician at Von Voigtlander Women’s Hospital and C.S. Mott Children’s Hospital.

Carter is currently in kindergarten and keeping up with his classmates. He goes to physical therapy once a week and is doing well with that also and Kasey couldn’t be happier. 

“This decision was the best one for him and we feel lucky that we had this option. He has exceeded all expectations, and I’m sure he will continue to keep us on our toes.”