Parents urge others to consider donating organs

Amy Stewart plays with son Cabell. The 14-month-old has nearly regained the set-back in muscle development from all the weeks spent in the hospital after he had a heart transplant.

SAVANNAH, Ga. - Amy and Brad Stewart understand parents when they say they can't bear the thought of losing a child.


But, the Savannah couple wants them to try.

"It's an uncomfortable thing. People don't like to talk about end-of-life decisions. They especially don't like to think about their children dying, but it's the kind of thing you really need to put thought into," Amy Stewart said.

The reason?

Someone or some family's decision last summer saved her son's life.

The Stewarts faced the unimaginable in 2009 when their 6-month-old son, Cabell, was diagnosed with idiopathic dilated cardiomyopathy, a condition in which the heart muscles enlarge and become unable to pump enough blood throughout the body.

In most cases, the cause of dilated cardiomyopathy is still a mystery to researchers.

The baby had been ill for weeks but gave doctors no clue what could be wrong. After a radiologist detected his enlarged heart, Cabell was rushed to Children's Healthcare of Atlanta at Egleston where the family received the diagnosis.

Doctors determined Cabell had only months to live unless he received a heart transplant.

Because infants' organs are generally smaller than those of adults, Cabell would need a transplant from a very young donor. The Stewarts were told the wait could be three months or more, possibly more time than Cabell had left.

The prospect of waiting on the death of someone else's child left the Stewarts uneasy. But they prayed that someone might see an opportunity through tragedy.

After 51 days of waiting, someone did. Cabell received his new heart Aug. 26.

More than 3,000 Georgians are on waiting lists for organ transplants.

The most common organs and tissues recovered today include kidneys, liver, heart, pancreas, lungs, intestines, bone, skin, heart valves. That means that one donor can potentially benefit 60 people or more, according to LifeLink of Georgia.

Currently, there are two children under the age of 1 year in Georgia waiting for organ transplants. There are seven children ages 1 to 5 on the waiting list and five children ages 6 to 10.

The wait for an organ donor is typically longer for infants because of their size, said Tracy Ide, public affairs coordinator for LifeLink of Georgia. Organs are allocated by blood type, height and weight, how sick the patient is and length of time on the waiting list.

When a child dies in a way that makes them a candidate for organ donation, the decision is left up to the parents or legal guardian.

Through the decision of a donor family that the Stewarts will never know, Cabell is thriving.

Anti-rejection drugs have so far proven successful in getting his body to accept the new heart. Through work with a physical therapist, the now 14-month-old has nearly regained the set-back in muscle development he experienced those weeks in the hospital.

"He sits up; he cruises; he can crawl. He can do pretty much everything other babies of his age can do," Amy Stewart said.

Now Amy is stepping out as a strong advocate for organ donation.

Since the day Cabell arrived at Egleston, Amy has kept a blog about Cabell's journey. She plans to someday organize the pages she has written and her photos documenting every high and low into a book about the family's experience.

For now, she volunteers as a public speaker for LifeLink of Georgia. It's the least she can do to show her gratitude for her infant son's second -- or perhaps first -- chance at life, she said. "I think that's where I can really help."

"I want people to see why organ donation month is so important. I want them to see Cabell, to see where he came from, where he is and to see the effects that a transplant can have on an entire family."

The donor family "didn't just save Cabell's life; they saved all of our lives."