Iowa three year old waiting for rare small intestine transplant

Iowa three year old waiting for rare small intestine transplant

A three year old girl from Iowa, La., has already beat the odds and now she is holding on for a rare transplant procedure that could save her life.

Little Rebecca granger is one of three, so in a full house, Rebecca's parents have their work cut out for them.

"It was a big surprise...we knew pretty early on that we were having triplets," said Alicia Granger, Rebecca's mother.

The two baby boys and baby girl seemed healthy for the first week, continued Alicia Granger. While the two boys remained healthy, doctors quickly realized that something was seriously wrong with Rebecca.

"They woke me up at 2 in the morning on Sunday. The disease had hit her," recalled Alicia Granger.

Her small intestines failing her at only a few days old, Rebecca defied the doctors' predictions and made it through the night.

"They asked us if we wanted to pull the plug, and we decided not to," said Alicia Granger of her and her husband's difficult decision.

The medical term for Rebecca's condition is necrotizing enterocolotis, death of the intestines. It most often affects premature infants and according to the NIH has an almost 25 percent death rate.

"When you first start feeding an infant, especially a premi infant, the formula just sits there in your intestine instead of digesting," explained Alicia Granger.

Still Rebecca keeps fighting. Now three years old, she is a "girly girl" through and through.

"She's a daddy's girl," said a smiling Jeff Granger, Rebecca's father.

With her princess backpack filled with feeding tubes in tow, she still stays active.

"She tries to watch TV, but she can't stand still long enough to watch it," described Jeff Granger.

Sometimes when Rebecca's energy wears off and her sickness sets in, all she needs is a hug.

"She'll go from a healthy little three year old to in the hospital and the PICU overnight," said Alicia Granger. "Even at three years old I still keep a baby monitor in her room," continued Granger.

Now Rebecca needs a small intestine transplant, a more recent type of transplant that is not very common, said Alicia Granger.

"The transplant she needs...another child will have to pass away for her to live," said a somber Alicia Granger.

Rebecca's liver and pancreas are not doing well either, so the family is in limbo.

"Kidneys could fail or liver could fail, so we just don't know when that's going to happen," said Jeff Granger.

Her parents' biggest hope: "no more bags, no more hospital stays, just a normal three year old," said Alicia Granger.

When the family receives the call that the transplant is available they must travel to Georgetown Medical Center in Washington D.C. for the procedure. Doctors expect the recovery to take between two and three months. Alicia Granger said the survival rate one year after the transplant is 80 percent.

She also said she hopes her daughter's wish comes true. Rebecca wants to go camping, but because of her condition the family cannot use a tent and sleeping bag. She requires a camper to maintain a more sterile environment.

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