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A Tiny Girl With a Huge Will to Live

By John Kelly
Monday, December 11, 2006

Idon't think I've ever met anyone as determined to live as Alycia Levy. Over the course of her seven years on this planet, Alycia has endured trials beyond imagining. At any one of them, she could have simply closed her eyes and walked toward the light. No one would have blamed her. No one would have been surprised.

But this is a kid who holds on to life with both hands.

When Alycia was 2 days old, doctors at Children's Hospital diagnosed her with chronic intestinal pseudo-obstruction. Her intestines didn't work, and the only way she could get the nutrition she'd need to live and grow was by having it injected directly into her bloodstream.

Which is how Alycia lived for the next five years. Her parents, Michael and Stefanie, learned how to care for her and how to recognize the signs of infection that are common to people with IV lines.

Fourteen months ago at Georgetown University Hospital, Alycia received a liver and bowel transplant. For the first time in her life, Alycia had a shot at normal. Then in January of this year, she complained of pain in her abdomen and was rushed back to Georgetown. Alycia's bowel was perforated, the result of scarring from an earlier infection.

Imagine that the organs in your body are jars in a cupboard, each containing a different substance, each serving a different purpose. Although the bowel might strike us as foul -- containing as it does the waste the body will expel -- it's vitally important. It's home to the worker bees of the digestive system: the millions of bacteria that break down our food, extracting nutrition.

We can't live without these bacteria, but they must stay in their jar. When Alycia's bowel was perforated, the bacteria spilled into her abdomen. This caused sepsis, an extremely dangerous infection in anyone, let alone someone whose immune system was as rickety as Alycia's. The Levys were told to prepare for the end.

There was a long shot, though. The Georgetown doctors told Alycia's parents about a last-chance option at Children's Hospital called an extracorporeal membrane oxygenation machine -- ECMO for short. Dr. Heidi Dalton, the medical director of the pediatric intensive care unit at Children's and one of the nation's leading ECMO experts, was waiting across town.

"The doctors said, 'In essence, we are going to take the blood out of your daughter,' " said Michael Levy. " 'We are going to oxygenate it by machine, and we are going to give it back to her.' "

Alycia spent six days on the ECMO, her bluish venous blood emerging from a catheter in her heart, traveling via tube through a device that added oxygen and subtracted carbon dioxide, then emerging bright red before reentering her body through an artery in her groin.

When her hands, feet and ears started turning black -- a byproduct of the infection known as purpura fulminans, the result of capillaries becoming blocked -- it looked as if her extremities would have to be amputated. Dr. Dalton tried something else: a plasmapheresis machine. It drew out Alycia's plasma -- dark in color, like some medieval humor -- then filtered it and returned it golden and healthy to her body.

The treatment saved Alycia's life. "I would consider her a true miracle," said Dr. Dalton. "I don't think anyone would have given her a shot to survive, even with ECMO and all the things we did."

The episode stays with Alycia -- she lost the tip of one finger, some of the vision in her left eye and all of it in her right -- but as I watched the wise-cracking first-grader zip around her Silver Spring house last week with her 9-year-old sister, Emily, then help herself to crackers off the kitchen table, I thought of something Stefanie said: "Alycia has had to fight so many times, she just knew how to fight."

ECMO-mentum

Pray that your kid never needs ECMO, but rest assured that if she does, Children's Hospital has it and the doctors and nurses who know how to use it. Children's is the only hospital in the Washington area equipped to handle pediatric ECMO cases.

We're raising money for Children's. Our goal by Jan. 19 is $ 500,000. So far, we've raised $39,505.69.

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