Boy, 9, holds on to hope for transplants
Suffering multiorgan failure, the Port Richey boy must wait out a dispute between an insurance company and a hospital in Miami.
By Mallory Simon
Published August 12, 2006
MIAMI - Terran Robinstein will turn 10 next week - if he lives that long.
Terran of Port Richey needs a new small intestine. A large intestine. A pancreas. A stomach, liver and spleen.
Wednesday he was in Jackson Memorial Hospital in Miami, where he was waiting to be put on a transplant list. But the hospital and the insurance company can't agree on payment for the surgery - or even where it will be performed.
So Terran, whose condition is so delicate a small complication could kill him, was set to be transported Thursday back to All Children's Hospital in St. Petersburg until money matters get settled.
"I don't know why they have to put this little boy in the middle of this," said his mother, Kim Robinstein.
Terran's body is in multiorgan failure and is rejecting the transplant he received in 2002.
Terran was diagnosed at birth with Hirschsprung's disease, which has left him with an intestinal tract that won't function correctly. He eliminates waste through a hole in his abdomen into a bag. Several other diseases complicate his condition.
In order for Terran to be able to eat and remove waste correctly, he needs the new organs.
But because Aetna insurance doesn't consider Jackson Memorial Hospital an "institute of excellence," Robinstein said she was told she has to go to New York, Pittsburgh, Nebraska or Georgetown for the transplant. The insurance company would reimburse up to $10,000 in transportation costs.
But Robinstein said she doesn't have the upfront money.
"I will do anything and go anywhere to save my son," she said. "I just don't know how we can afford to get there. Even to get to Miami we had to take Terran in an ambulance. We can't even afford to go bankrupt. You have to have money to do that."
Spokesmen for the hospital and the insurance company said they could not comment on Terran's case.
As Robinstein waited to see how the money situation sorted itself out, she said she explained to her son what would happen if donor organs became available.
"It's hard for him to understand that someone his own age is going to have to die so he can live," she said. "No more than he wants to die, does he want someone else to have to die for him."
It's not the first time the Robinstein family had to agonize over one family's loss to keep Terran alive.
In 2002 Terran needed a transplant so he could eat normally, instead of being fed through an IV that was damaging his liver. Without the new organ, his liver would fail and he would die.
On Sept. 11, 2002, the Robinsteins found out there was a donor for Terran. The transplant surgery was successful.
For two years after the transplant Terran slowly began to recover.
The St. Petersburg Times wrote about Terran's first Thanksgiving in 2002 when he was able to eat normally and in September 2003 when he was able to attend school where he lives in Port Richey.
But in 2004, his body began fighting the donor organ.
Three months ago his body went into severe rejection.
Still, despite all he is going through, the 9-year-old tries to keep his hopes up and make the people around him happy.
Most children in his condition don't make it as long as Terran has, his mother said, so despite the odds against him, the family will attempt to make however long he has left as great as possible.
"I know I'm not going to have a quantity of life with Terran, so I'm going for quality," Robinstein said. "I want every day he is alive to be the best it can. I'm going to do everything I can to save him because I just can't imagine my life without that amazing little boy in it."