Alexander (Alex) Conrad, 8, is one of a kind. He lives with an extremely rare chromosomal deletion, which has unfortunately caused a variety of complex medical issues, including a severe form of scoliosis.
By the time Alex was 2 years old, he’d endured numerous surgeries to fix a variety of physical abnormalities. His 70 degree spinal curvature was the last hurdle the family hoped to face.
“We’d spent so much time in the hospital already,” said Jared Conrad, Alex’s father. “We were really hoping that the scoliosis wouldn’t require more surgery.”
Dr. Klane White, a pediatric orthopedic surgeon at Seattle Children’s, couldn’t make that promise, but he did have good news for the Conrad family. White is one of a few surgeons in the region using the new technology known as the MAGEC (MAGnetic Expansion Control) system. The MAGEC system would mean far fewer surgeries and less time in the hospital for Alex, White said.
“It was great news for Alex,” said Jared Conrad. “We’d been through a roller coaster — surgeries, a feeding tube and a diagnosis of scoliosis – in a very short period of time. The MAGEC system seemed like a blessing!”
Straightening things out
The MAGEC system uses an adjustable rod to brace the spine during growth and minimize the progression of scoliosis. Such rods are not new; surgeons have been using them for years to help correct severe curvatures. But previous iterations required the surgeon to re-open the incision about every six months as the child grew to lengthen the rod. The MAGEC system uses magnets to allow the rod to be adjusted from outside the body.
“The physiological and psychological trauma of having to come in for surgery every six months is hard for patients,” said White. “It’s surgery, and it can be painful. You have to stay in the hospital. You have to take time off school or work. And it can be more costly. The MAGEC system cuts the number of surgeries you’ll need and significantly reduces the risk of complications.”
Alex had surgery on Oct. 22, 2014, just before Halloween. He was in and out of the hospital in about five days and back to school within three weeks. Because of the MAGEC system, Alex has to spend less time in the hospital and more time doing the things he loves.
“When we came in for the assessment six months after the surgery, it was actually kind of fun,” said Jared Conrad. “The whole thing took about 15 minutes. As doctors adjust the rod, you can actually see the rod turning on the ultrasound. There was no pain and no back aches. Instead of surgery we were in and out of the hospital in no time.”
That’s the goal, said White. To avoid the large number of surgeries children like Alex, who have early onset scoliosis and also face other medical challenges, need to be exposed to during treatment.
“We’re on the leading edge of treating early onset scoliosis,” said White. “Alex is one of a kind because of his chromosomal deletion, but he’s one of many kids with early onset scoliosis who need complex care a multiple surgeries for other medical issues. This family being happy with their care is what we’re trying to accomplish for everyone.”
Celebrating one year without surgery
It’s been a year since Alex’s surgery and he’s doing great. The only difference is the rod he has in his back.
“We always joke that one of the genes he’s missing is the one for anger,” said Jared Conrad. “Through everything, he’s always been so happy! We are so thankful for Seattle Children’s and Dr. White.”
Dr. Wally Krengel, chief of Spine Surgery at Seattle Children’s, said the team at Seattle Children’s strives to offer every reasonable option for treatment of complex spine conditions, helping reduce how much time and travel families have to endure to get the care they need.
“When newer options become available, we would like to be able to offer those options here,” he said. “In general we do that as soon as there is quality information available that suggests that good outcomes are likely with the new treatments.”