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Seven-organ transplant recipient dies

The boy whose smile lit up a room died suddenly after receiving a new digestive tract.

By CAMILLE C. SPENCER
Published September 26, 2006


Terran's body will be at his Port Richey home on Wednesday and Thursday for people wishing to pay their respects.

His funeral will be held at 1 p.m. Friday at Faupel Funeral Home, 7524 Ridge Road in Port Richey.

He spent the weekend playing video games and eagerly awaiting today's date, when doctors hoped the 10-year-old could savor solid foods for the first time in three months. Steak was his first choice, but ice cream would do.

Terran Robinstein especially looked forward to life beyond the walls of Jackson Memorial Hospital in Miami, where he'd been staying on and off for the last year.

Every day, he reminded his mother, Kim, of the $150 he had banked from her - $1 per blood draw and $5 per IV insert - to treat his doctors to a Red Lobster dinner after his release.

And after a seven-organ transplant on Sept. 3, Terran was a post-anesthesia expert, giving advice to weary parents of other transplant kids.

When their toes wiggle, that's when you can start talking to them and they can hear you, he'd say. It was a secret code Terran developed with his mother.

The energetic boy with a bright smile died around 5 a.m. Sunday (Sept. 24, 2006) at the Miami hospital. Terran, diagnosed with Hirschsprung's disease, suffered complications from his transplant and bled to death, his mother said.

Terran's transplant entailed a new esophagus, stomach, pancreas, small and large intestine, liver and spleen. His disease caused his intestinal tract to malfunction, so he eliminated waste through a hole in his abdomen into a bag.

Also attached to his small frame were abdominal tubes used to drain a wound infection. They began leaking two weeks ago, so Terran had emergency surgery.

That's when doctors found his esophagus graft had fallen apart. Though they repaired it, doctors told Kim that the graft could break apart again, about nine days later.

That would have been Monday, when doctors scheduled tests to check the graft and see if the boy could eat today.

"He died quite suddenly," said Kim. "He had drains on his side that kept leaking. Terran started losing consciousness and couldn't breathe. They couldn't get surgeons there fast enough. When the drains came apart, he essentially bled out."

Lisa Morgan, a registered nurse and care coordinator for the state Department of Health, helped coordinate Terran's care.

"He had a real vivacious spirit about him," Morgan said. "You didn't know (he was sick) until he took his shirt off. It looked like a road map of Texas. But all he wanted was to be a regular kid."

Meanwhile, Kim, still in talks with her insurance company, Aetna, over how much she must pay for her son's surgery, has yet to open the mounting stack of medical bills.

She mourned Monday for the boy who forced her to learn medical lingo and how to use the Internet.

On his Web site, www.terranstransplant.com, Kim wrote, "I have no reason to wake up in the morning no smile no laugh no reason to go on with my life ... I breathed to see him smile."

Kim planned a home funeral for Terran, something she says serves a special significance for a boy who spent most of his life connected to medical equipment.

"I want Terran in my home for two days, so people can come see him in his bed, in his room," Kim said. "I want no tubes, no wires. I just want to hold my baby, so I can cry."

[Last modified September 26, 2006, 07:20:11]


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