Archive for Sunday, November 16, 2008

Toddler awaits transplant

Eudora 3-year-old battles congenital heart defects

November 16, 2008

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— Visitors to the Eudora home of Chris and Amanda Ellis are greeted by brightly colored children's toys.

It's obvious from the small princess dresses that little girls live here. But one of those little girls - 3-year-old Isabelle - hasn't been at home for two months. She's in St. Louis, awaiting a heart transplant.

Isabelle has had heart issues since days after her birth. A Kansas University Medical Center cardiologist told her parents she had hypoplastic left heart syndrome. The condition is a series of complex congenital heart defects and would require a three-stage surgery called the Fontan series.

"We were very naÃive as a young married couple, not having a baby. We didn't think about those kind of things, and we were suddenly baptized into the world of congenital defects," Chris said.

The Fontan series is not a cure, but tricks the heart into functioning correctly. Isabelle did well with the first round of surgeries in 2005. But she didn't respond well to installation of a pacemaker in August at Children's Mercy in Kansas City, Mo. Her kidneys failed.

Once her kidneys began working again, doctors discovered a blood clot had developed near the site of one of her heart surgeries.

On Oct. 10, her Fontan series was reversed. About two weeks later, doctors sent her to St. Louis, where she was evaluated for a heart transplant.

"You think that you'd just show up, and they would OK the transplant. But they put her through days and days of testing, and by miracle alone she made it through the tests," Chris said. "I have no idea how to explain how she's still here. She's extremely tough and resilient."

Isabelle is No. 3 on the 1A list - the highest of three transplant lists.

"Unfortunately, there has to be a tragedy somewhere else in this country or the state in order for us to become a candidate," Chris said.

Warrior princess

Isabelle may like to dress up like a princess, but that's not an indicator of her resiliency. Her father describes her as a warrior princess.

"In one aspect, she's made of porcelain, but in another this kid is as tough as they get," Chris said.

Her parents know they must support their little princess, despite the feelings of helplessness that at times can overwhelm them.

"We've held her hand, we've read her stories, give her hugs, give her kisses and remind her that she's going home soon," Chris said.

For many weeks, Isabelle's 2-year-old sister, Elorah, hadn't been able to see her sister. Chris and Amanda thought visits to Children's Mercy could have been too traumatic for both girls. Once Isabelle was moved to St. Louis, they decided it was time. During her initial visit, Elorah was a bit standoffish. But soon, Isabelle reached out her hand to Elorah - and the two girls didn't let go for the remainder of the visit.

"For Elorah, it was like heaven on earth because both of her parents were there and her sister was there, and it hadn't been that way for nine weeks," Chris said. "It was a very tearful moment."

Financial strain

The Ellis family is in financial trouble, in addition to the physical and emotional toll they've been handling the past three years. Amanda recently quit her job as a Basehor-Linwood middle school teacher to stay with Isabelle.

Insurance has covered most of their medical costs, but Chris, who works for Sprint in Kansas City, said he can't imagine what the transplant will cost.

"We were told the average transplant costs about a quarter of a million dollars, and I haven't even talked about the last 10 weeks (when Isabelle was in ICU at Children's Mercy)," Chris said. "There's no standard, but it didn't matter what it would cost. I would work three jobs if that's what it would take to pay for the care that was needed."

A neighbor, Denise Davis, helped set up a charitable fund. And the Ellises will work with Children's Organ Transplant Association, a charitable group that teaches people how to raise money.

Chris said Isabelle has been in good spirits and playing quietly with her mother. But a recent visit with Isabelle gave Chris insight to how his warrior princess is feeling.

"She's a total chocoholic, so I told her: 'When you get home, you can have all the chocolate you want,'" he said. "Then she mouthed the word 'chocolate,' and I thought, OK, I know my kid is still fighting and wants what she wants."

- Eudora News reporter David Oakes can be reached at 542-2747.

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