Bolivar ‘bubble boy’ leaves Children’s Mercy Hospital

Bolivar ‘bubble boy’ leaves Children’s Mercy Hospital
By DEBRA SKODACK
The Kansas City Star
Despite the dreary gray weather, Thursday turned into one of the brightest days so far in the life of tiny Granton Bayless.

Eleven-month-old Granton rolled out Children’s Mercy Hospital’s front door in a bright blue wagon wearing the cowboy boots his parents bought months ago in hopes that this day would happen.

Granton’s blue eyes widened as he peered over a protective mask to a sky he hadn’t seen since being admitted to Children’s Mercy on March 27.

The Bolivar, Mo., infant was born with a rare condition — severe combined immunodeficiency — that prevents his body from producing enough T cells to fight off disease.

The condition often is referred to as the “bubble boy” disease because its victims are so vulnerable to infectious diseases that some must live in protective bubbles. Experts estimate that it occurs once in every 500,000 births. The cure is either a bone-marrow or a cord-blood transplant.

What made Granton’s recovery remarkable was how gravely ill he was when he underwent a cord-blood transplant June 10. At the time, the baby was on a ventilator fighting multiple infections.

There were no medical statistics, no success rates on whether Granton would live.

“We’re not talking percentages, more like we have heard (success) stories,” said Doug Myers, a pediatric oncologist and one of a dozen or so doctors and nurses who came to say goodbye to Granton on Thursday.

In fact, for most of the time, Daniel and Jenni Bayless faced the possibility of their only child dying while at Children’s Mercy.

One of the most critical periods came in late May, when doctors put Granton on a ventilator. They gave him medicine that paralyzed him so the equipment wouldn’t hurt him if he moved and so he wouldn’t burn energy or oxygen.

The Baylesses considered taking Granton off the ventilator and having a tracheotomy performed.

“I was thinking about not being able to see him wake up before he dies,” Jenni Bayless said Thursday of that time. “I wanted to see him awake and look into his eyes.”

Devout Baptists, the Baylesses prayed for guidance and decided to wait. Granton rallied enough to try the cord-blood transplant.

A bone-marrow transplant was considered too risky because Granton was fighting a respiratory syncytial virus. But before that was ruled out, about 2,200 people in five towns in Missouri and Kansas registered as bone-marrow donors in hopes of helping Granton or someone else.

Already, two people from those drives have been matched to awaiting patients, including a 55-year-old woman fighting leukemia.

The Baylesses had hoped to take Granton home to Bolivar for his first birthday on Oct. 2. But his doctors want them to stay at a sanitized apartment at the Ronald McDonald House for two months to allow his immune cells to mature more.

“It is kind of discouraging not to be going home but this will help protect him from other kids,” said Jenni Bayless, adding she would be tempted to have friends over or to take Granton to church.

“This is extra security and protection so he isn’t in places he shouldn’t be,” she said. “That’s good, because I don’t want to go through this again.”

The first year after a transplant is most risky for Granton, said Jignesh Dalal, a member of Granton’s transplant team. But, Dalal said Thursday, once Granton’s immunity system develops, he can live a normal life.

Shortly after 5 p.m. Thursday, Jenni Bayless stood at the door of her family’s apartment at the Ronald McDonald House. Granton snuggled in her arms, a feeding and medicine tube coming out of his left side — a reminder of the challenges still ahead.

“It’s feels wonderful,” Jenni Bayless said. “It feels awesome.”

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