Local baby with rare disorder could be soon pulled off life support despite parents' wishes

NOW: Local baby with rare disorder could be soon pulled off life support despite parents’ wishes

SOUTH BEND, Ind. - Keaton Crull was born in June with Spinal Muscular Atrophy (SMA) Type 0, a disease that causes progressive muscle degeneration with no cure. Doctors have told his parents, Kyle and Jennifer Crull, Keaton won’t live much longer, but the Crulls aren’t ready to give up.

However, Keaton could soon be pulled off life support without their approval.

There’s no question that little Keaton is a fighter.

"They told us he wouldn’t live to be a month and he’s three months," Kyle Crull, Keaton's father, says. "Now, they’re saying a year at most."

He was born with a rare genetic disorder that his parents only discovered they were carriers for after his birth.

"They told us he’s Type 0, which is the worst," Kyle says.

The Muscular Dystrophy Association says babies with Type 0 rarely live six months. They need a feeding tube to eat and require a ventilator to breath.

"They say that he has holes in his brain that’s getting bigger," Kyle adds. 

And blood clots in his legs requiring constant pain medication. If that’s not enough, doctors also believe Keaton had injuries during birth that caused fractures in both his arms, which aren’t healing properly.

Despite all of these injuries and issues, his parents aren’t ready to give up on him.

"If we knew that there was no chance of him ever having quality of life, then no, we wouldn’t continue on, but because there is a chance that he could have quality of life, we want to at least try to give him a chance at the Zolgenama and see," Jennifer Crull, Keaton's mother says.

Zolgensma is a one-time medication used to treat SMA. The Crulls say the cost is around $2 million.

When asked if the Crulls' insurance would cover that, Kyle told us, "We’re in an argument now fighting about that."

The Crulls have already tried another medication called Spinraza and another hospital, Riley Hospital for Children in Indianapolis. Keaton is currently being treated at Norton Children’s Hospital in Louisville, Kentucky, a hospital that’s more equipped to handle his disease.

The Crulls want to try Zolgensma with the hope it’ll increase Keaton’s motor-function, but doctors at Norton have instead recommended palliative care, saying Zolgensma won’t work.

And currently, the Crulls currently don’t have a say in their son’s treatment.

"They took custody of him on... I want to say the 22nd (August)," Kyle says. 

According to confidential documents we obtained from a Kentucky Child Protective Services hearing, doctors at Norton claim the Crulls abandoned their son by being "minimally involved," so the state of Kentucky took custody of Keaton, which gives the hospital the authority to make medical decision instead of the Crulls.

"They expect us to stay there with him 24/7 and we can't," Kyle explains. "We have other kids and bills and stuff like that that we have to maintain, so we made a decision, as a family, to go down there on the weekends," Kyle says.

"I made the hospital aware that I would be working between 5 a.m. and 3 p.m., so I couldn’t take every call that I got, especially being a new employee," Jennifer says, adding her last job didn't work out because of Keaton's constant need for care.

Jennifer tells us she returned all the calls she got from the hospital.

We reached out to the hospital and child protective services for more information, a spokesperson for both Norton and CPS told us they couldn’t discuss Keaton's health or his case.

"On the 29th (September), there’s going to be court and, basically, me and my wife have to give a defense of why our son should get this medicine and why we should continue to fight for his life and not give up on him," Kyle says.

The Crulls also say the hospital is seeking a DNR, which is also in the confidential documents from the hearing.

"You know, maybe doctors will be right and maybe he’ll be someone who doesn’t respond to it and if that’s the case then we can know that we tried everything we could," Jennifer says beneath tears.

The Crulls say the hospital and the state of Kentucky are making an already difficult situation worse.

In the documents we obtained, doctors for the hospital say Keaton’s life is becoming more difficult and a DNR is the moral thing to do.

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