Heart to heart: Two families' journey together to transplant

In the month of June, two lifesaving heart transplants were carried out by a dedicated cardiac team at Levine Children’s Hospital, giving two young boys a new lease on life. Along the way, their mothers faced the darkest hours in their sons’ lives, but found strength from each during their months-long stay at the hospital.

Allyson introduces her son Travis Robinson Jr. (3 months old): “He has an enlarged heart and we don’t know the cause of the condition, but we know how to treat it, which is with a heart transplant.”

Another devoted mother, Miriam—caring for her 3-month-old son, Aydan, just down the hallway from baby Travis—shares, “we’re on the Berlin heart awaiting a donor for transplant.”

The Berlin Heart will keep a critically ill patient alive until a donor heart becomes available.

“I never thought that I would get to a place to where my baby was so sick that I couldn’t even hold him,” says Travis’s mother.

Miriam shares a critical point in Aydan’s journey sharing, “His heart was failing him and we started out on echmo-bypass. We were there for a week while we waited to get approved for UNOS.”

ECMO stands for extracorporeal membrane oxygenation – a heart lung bypass to support premature infants and children with respiratory failure. Levine Children’s Hospital continues to be the only facility in the region providing this advanced cardiac service.

Both boys were listed as high priority on the United Network for Organ Sharing list. That began the waiting process for their new hearts.

Aydan’s mother explained that he was first approved for a Berlin Heart. Like Aydan, Travis also received a Berlin Heart initially – a temporary method of keeping the boys’ hearts pumping blood throughout their tiny bodies as they awaited transplants.

Though the Berlin heart is not a permanent solution, it offers hope—and time. Because most children are too small for a regular artificial heart, this machine is attached externally.

“There are two tubes that are connected actually to his heart; his body pumps the blood out of his heart and this machine pumps it back into his body,” explains Allyson.

One of the most important aspects to the Berlin heart, Miriam shares, is that it allows Aydan to be more mobile while in the hospital’s care so that he can regain as much normalcy in his life as possible while he waits for a new heart.

Awaiting a transplant is an unthinkable challenge for any parent to face. “The fact of knowing that I’m waiting on someone else to lose their child for my child to live is the hardest thing for me, because you don’t want to pray for someone to lose their child knowing what that means for us,” says Allyson.

“I don’t know what tomorrow may bring, but I’m thankful for where we are today,” says Miriam.

The day has finally arrived. Baby Travis will receive his new heart. The waiting room is filled with Travis’s family members, who cling to every word shared by Levine Children’s Hospital’s Gonzalo A. Wallis, MD, Travis’s pediatric heart transplant physician, as he explains the procedure ahead.

It is a moment no parent would soon forget.

“I was at work when I got the phone call; I was very, very emotional”, recalls Travis’s father.

It took nearly 4 months for Travis to get a heart that was a match for him. The family received the joyful news on Memorial Day weekend.

After an eight-hour procedure, Travis was off the mechanical heart and his new heart was beating on its own.

Exactly two weeks later, Aydan’s family also got the call that he too would receive a new heart. And with that, the mission to safely deliver his new heart began: Med Center Air, the transportation center of Carolinas HealthCare System, coordinated with the transplant team at Levine Children’s Hospital, including a team of skilled physicians and surgeons who would soon perform Aydan’s life-saving transplant surgery.

“We want the shortest amount of bypass time available for the recipient,” explains Thomas S. Maxey, a pediatric cardiac surgeon at Carolinas HealthCare System’s Sanger Heart and Vascular Institute and Levine Children’s Hospital. He continues, “the donor heart needs the shortest possible time without a blood supply.”

Like Travis, Aydan’s transplant surgery was a success. The two families share the same sense of relief and gratitude for their sons’ survival stories at the hands of Levine Children’s Hospital’s skilled medical team.

Allyson recalls a time earlier in the year when they had to face the devastating thought of planning end-of-life arrangements for their son. But the story had a different ending—instead with a miracle. “Now, we’re planning what life is going to be like after the hospital and it’s amazing”, says Allyson.

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Copyright 2016 WCNC


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