Family waits for heart transplant for dying 3-year-old

By Randy Myers

Knight Ridder Newspapers

May 18, 2004

PALO ALTO, CA -- (KRT) Bill Wessels prays every second of the day for his energetic and independent-minded boy to miraculously reappear.

Only a new heart could make the 32-year-old dad's wish come true.

If Drew fails to receive a heart transplant, and get one within days, he will die.

Drew is 3.

"We're in the final days," Bill Wessels said, tears flowing down his cheeks. "If there's a transplant then we will have a new lease on life."

For now, all this Oakley family can do is wait and hope to receive a transplant from a donor who is about the same size and age as their only child.

Drew's been diagnosed with dilated cardiomyopathy, a disease in which the heart's muscle fibers are enlarged or stretched in one or more chambers of the heart. It strikes about six in every million children a year. The causes can be genetic or metabolic, but as in Drew's case, often it remains unknown.

"He needs a heart very badly," said Dr. James Andrus, pediatric intensive care specialist at Lucile Packard Children's Hospital at Stanford. "The clock is really ticking on this kid."

The urgency of Drew's situation puts him at the top of the donor list. Should he get a heart, chances are he'll adapt well. Andrus estimates that 60 to 70 percent of heart transplant recipients live beyond five years.

In 2003, 48 successful heart transplants were performed on children age 1 to 5 in the United States.

Bill and his wife Stephanie rarely leave their son's bedside at the Palo Alto hospital. Each day wrings Bill out, as he and his wife stare at the small and barely moving figure that seems to be swallowed up by an adult-sized hospital bed and tethered to a network of monitors and tubes.

Doctors put Drew on a ventilator and an extracorporeal membranous machine, or a heart and lung bypass machine, which can only be used for a brief time because of the threat of bacterial or fungal infection. Every five or 10 days, another circuit bypass machine for children needs to be done, re-exposing Drew to infection.

Neurologically, Drew is doing well, Dr. Andrus said.

Five days ago, he went into cardiac arrest and his heart stopped beating for two to four minutes. The family has been at Lucile Packard, which specializes in heart transplants, for 50 to 60 days.

At one point, Drew appeared to be improving, and even ventured into the hospital's playroom.

"But ultimately his heart could not sustain the need and ultimately he began to go into heart failure again," Bill Wessels said.

The Wessels' ordeal began in September when Drew started to get sick and didn't want to go out and play. He told his parents that his legs and stomach hurt. Then he began to vomit, often hours after eating.

They took him to John Muir Medical Center in Walnut Creek and a chest X-ray revealed his heart condition.

He stayed at Children's Hospital in Oakland for about two and a half weeks in October and later went home. At first he responded to a battery of medication. That was short-lived.

"There was a small chance that his heart would repair itself but it didn't," Bill Wessels said. "Every month we were hopeful when he would have an echocardiogram."

Bill Wessels decided to alert the media about Drew to stress the importance of becoming an organ donor.

"That's why I'm doing this," he said. "It's very hard for me to sit here and tell my story. But the message just has to get out so people can choose to donate."

Dr. Andrus sees that need on almost a daily basis.

"If a family's going through a tragedy like this, there is such a thing as a gift of life," he said.

Finding the right donor for an adult is easier than for a child, Andrus said

"You need someone who dies but still has heart that works well and that's a pretty hard thing to find," he said.

Drew's odds for getting a transplant will increase over the Memorial Day weekend, Andrus said. With more car accidents occurring over the holidays, the organ pool expands.

But that's about two weeks away, and Drew might not make it until then.

Bill Wessels knows his boy would turn into a good man.

"He would do some good things," he said, pausing.

"We just need a heart."

Copyright © 2004 Contra Costa Times (Walnut Creek, Calif.).

Visit the Contra Costa Times on the Web at http://www.contracostatimes.com.

Distributed by Knight Ridder/Tribune Information Services.

This article posted July 16, 2004.