Monthly spina bifida clinic coordinates care

Kids can visit several doctors in a single day at Norton Children’s Hospital

Avery Richardson turned 3 in December, but the Shelbyville, Kentucky, girl has already been through more than most kids. Avery has undergone six operations, including two in the days immediately after her birth.

Avery has spina bifida, a birth defect that causes the structure enclosing the spinal cord to fail to form properly in the womb.

“She’s a trouper,” said Sarah Richardson, Avery’s mother. She described her middle child as “sassy” and “strong.”

“It’s incredible to watch the resilience that Avery and other kids have that are going through the exact same thing,” Richardson said.

Avery sees a pediatrician, urologist, gynecologist, orthopedic surgeon, neurosurgeon and spine surgeon for her spina bifida. That can mean a lot of appointments, which can be taxing on the entire family.

What we offer

Norton Children’s Hospital Spina Bifida Clinic offers services from the following specialty practices and support services:

  • Norton Children’s Gynecology
  • Norton Children’s Neurosurgery
  • Norton Children’s Orthopedics of Louisville
  • Norton Children’s Urology
  • Norton Children’s Hospital rehabilitation and social services
  • Family support services from Spina Bifida Association of Kentucky
  • Kentucky Commission for Children with Special Health Care Needs
Coordinating care

To ease the burden, Norton Children’s Hospital offers a special Spina Bifida Clinic on the third Wednesday of every month, allowing Avery and others with the condition to see their doctors in a single day.

“It’s a good way for families to see all the people they need to and get all the tests done,” said Thomas M. Moriarty, M.D., Ph.D., Avery’s pediatric neurosurgeon at the clinic.

Before the clinic opened in 2016, getting Avery to her doctors’ appointments was difficult. Her mother recalled one seven-day stretch in which Avery had seven appointments.

Dr. Moriarty said the clinic also has the advantage of making it easy for physicians to coordinate care. Getting another specialist’s opinion is as easy as walking down the hall.

“A lot of these concerns are overlapping, so we can get together and talk,” he said. “I think it’s working really well.”

Richardson agreed.

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“I prefer the clinic setting, because there are so many things with spina bifida,” she said. “It’s not just one doctor that takes care of it. The team approach is so important.”

Find out more

The Norton Children’s Hospital Spina Bifida Clinic offers care planning for expectant mothers with a diagnosis and immediate and long-term care for children of all ages. For more information, call (502) 629-7225.

In April, Richardson left a management job to become program coordinator for Louisville and Western Kentucky for the Spina Bifida Association of Kentucky. On Norton Children’s Hospital Spina Bifida Clinic days, she brings “survival snack bags” to help the patients — and their siblings — get through the long day.

Since it began in 2016, the clinic has served 61 patients through 320 appointments. Each patient typically sees three to four specialists during a visit. It normally would require more than 1,100 separate specialty appointments for the same care.

This clinic provides convenient, coordinated care to these families and will continue to positively impact the lives of children with spina bifida in the region, which is particularly hard hit by the condition.

‘Resilient’ children

In Kentucky, two out of every 1,300 children are born with spina bifida — twice the national average. The cause of the birth defect is unknown, although it’s thought to be the combination of genetics and such environmental factors as lack of some vitamins and nutrients during pregnancy and exposure to pesticides.

Spina bifida develops during the third or fourth week of pregnancy, before most women realize they are pregnant. When they’re born, children with spina bifida need immediate medication attention.

“During the first day or two of life, [these babies] typically have one or two operations,” Dr. Moriarty said.

Dr. Moriarty said children with spina bifida are incredibly resilient, like Avery.

“These children tend to be some of the most tough, outgoing, survivor kind of kids,” he said. “Some might think these children are at a disadvantage in life having this condition. That’s not the way these kids see themselves.”

Richardson sees her daughter’s willful nature as an asset in the long run.

“There’s nobody that’s ever going to tell Avery she can’t do something in life — because she’ll find a way to prove them wrong,” she said.