Family deals with aftermath of baby heart transplant – Kansas City Star

Liam Maddox, 21 months, is a lively, engaged toddler, checking out his dad’s cellphone, throwing a ball for his family’s Labrador retriever Desmond and trying to get his basketball in the mini-hoop.

But for his parents, Paul, 25, and Jaqueline “Jaci” Maddox, 22, he’s a walking miracle.

Their journey started when Liam came down with a cold in March 2014. Babies get colds all the time, don’t they?

But for Liam, 5 months old at the time, it turned out to be much more serious.

“We were in Alaska, and we figured it was just from flying,” his mother said. “But he was stuffed up and not getting better. We were turned away from the hospital three times, and two days later, when they finally admitted him, the doctors said he was one of the sickest babies they’d ever seen.”

The diagnosis was dilated cardiomyopathy, a disease of the heart muscle that keeps it from pumping as much blood as the body needs.

Before they knew it, they were at Seattle Children’s Hospital, where Liam was on life support for two weeks. He needed a new heart, but he couldn’t go on the transplant list until he was breathing on his own. Once on the list, it was an agonizing 15-day wait until a suitable heart was available.

At any given time in the United States, there are more than 120,000 people waiting for transplants according to the United Network for Organ Sharing. UNOS estimates someone is added to the waiting list every 10 minutes, and about 22 people die every day waiting for a transplant, so it was by no means a certainty that a pediatric-sized heart matched to Liam’s blood type and markers would be available in time.

“They said it was one of the quickest and smoothest heart transplants they had done, and the heart started right away,” Jaci Maddox said. “Two-and-a-half weeks later, he was discharged. He’s our first kid, and we didn’t know what to do anyway, and then this.”

Liam required anti-rejection medications every two hours, so the young couple took shifts round the clock.

Family and friends in Durango, Denver and Wrangell, Alaska, Jaci Maddox’s hometown, raised $30,000 to help with co-pays and living expenses, because they needed to stay near the hospital, so Paul Maddox couldn’t come back to his job in Durango.

The Maddoxes were able to move back to Durango in mid-August, when his employer, American Electric Co., transferred him from Seattle back to his hometown.

“They said he was well enough to be further away from the hospital,” Jaci Maddox said, “We’ve settled into a rhythm. Two medications twice daily (into a port in Liam’s stomach), blood tests every two weeks. He’s gotten so used to those he doesn’t even cry anymore, which is sad to me.”

But he really doesn’t like the electrocardiograms, Paul Maddox said, in large part because they have to hold him down for the test.

The Maddoxes check Liam’s heart rate every day and monitor how long he sleeps – sleeping too much can be a sign of heart failure – but sometimes he’s just been running around a lot and is tired, Paul Maddox said.

“Liam just keeps running,” he said, looking worn out from trying to keep up with him.

A big challenge is keeping an active little boy away from germs, because the anti-rejection drugs work by suppressing Liam’s immune system.

“Every time he gets a cold, there’s a chance he’ll start fighting his heart,” she said. “His immune system will get stronger as he gets older, but I don’t think I’ll ever be able to put him in day care.”

Because an illness is so risky for Liam, his family and doctors monitor him carefully.

“If his temperature is over 101 degrees, he goes to the hospital,” Paul Maddox said. “I had an electrician comment on my gray hairs today, and I told him why.”

A CHALLENGING FUTURE

“Thousands of transplant recipients are living everyday lives,” said Jim Inman, marketing director for the Children’s Organ Transplant Association. The organization provides a fee-free nonprofit donation account for pediatric transplant patients that will follow them for their entire lives. “But there are follow-up visits, insurance premiums, prescription drugs, and those families who don’t live near a transplant center will have travel costs.”

Inman said many families have to raise from $50,000 to $100,000 each year to cover those costs. The odds are also high that at some point in his life, Liam will need a kidney transplant and another heart transplant.

“We’re hearing talk about meds that only suppress the immune system around the heart,” Jaci Maddox said, “or growing your own heart, so maybe it will be easier as he grows up. But for now, he’s good, we’re good, and we’re just thankful he’s here.”

HEARTFELT CELEBRATION

Sunday’s Heartfest 2015, the second year of raising funds for Liam’s ongoing care could become an annual event to help pay for the expenses.

The event drew about 75 of the Maddoxes’ family and friends who are happy to have the couple and Liam back in Durango.

Some had traveled to Seattle several times and watched the small family face all of Liam’s medical challenges.

“They did wonderful. … They really became stronger as a couple because of it,” said Darrell Maddox, Liam’s grandfather.

Liam’s aunt, Ginny Hofferber, visited Liam in the hospital when he wasn’t fully conscious and noted the contrast with his current health.

As the band played Sunday, Liam stood directly in front of the stage holding a small shaker and bouncing to the music.

“It’s amazing how much he’s changed,” she said.

#Heart

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