Living with hydrocephalus

HealthBeat

SIOUX FALLS, S.D. (KELO) — For every 1,000 babies born in the U.S., one to two will have hydrocephalus.

Rapid City native Luke Pearson was born with hydrocephalus, an abnormal accumulation of spinal fluid within the cavities in the brain.

Luke’s parents, Suzanne and Lance said he had a shunt placed, which is meant to allow fluid to drain out of the head.

“We ended up flying out to the University of Minnesota, the children’s hospital, and spent some time out there with them and they kind of handled it when he was a baby,” Lance said.

After yearly checkups, doctors at the U of M thought he had grown out of his hydrocephalus– but as he grew older he began experiencing headaches.

“So the hydrocephalus slowly developed and got worse and worse and then he kind of went into an acute coma and had to have emergency surgery as a result of that,” Dr. Shawn Vuong said.

In August of this year, Luke was flown to Sanford in Sioux Falls where he had his shunt replaced, allowing the buildup of fluid to be relieved.

“It was affecting all kinds of things in his body. He was having some sort of, not a seizure, but, I was calling him an episode really when we were in the ER, to where he would, he would kind of clench up and, and almost shake,” Suzanne said.

Since getting his new shunt, Luke’s doing well.

“Oh, better. A lot better actually,” Luke said.

His family is sharing their story to remind others that yearly checkups and follow-up care is crucial– and to always trust your instincts.

“Parents you know your kids and, and my wife, if she wouldn’t have said we need to take him into the ER, you know, I don’t want to think about where we’d be,” Lance said.

“If a child has ever been diagnosed with hydrocephalus, you’ve always got to think that it could be the hydrocephalus causing those problems. And so luckily he got into the hospital when he did,” Vuong said.

To learn more about hydrocephalus, click here.

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