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Pediatric Transplants Don’t Last Forever

Five years after a heart transplant
• 71.5% primary heart transplant survival rate
• 57.8% repeat heart transplant survival rate

Meet Emery

Emery_headEmery was born July 30, 2008, with hypoplastic left heart syndrome (HLHS). Her parents received the diagnosis about 23 weeks into their pregnancy. The couple knew Emery would be facing multiple open heart surgeries, and possibly a heart transplant. Emery endured two of three staged open heart surgeries for HLHS, but her right ventricle was not functioning well, and she was assessed for transplant. At 19 months old, Emery was put on the transplant waiting list.

Her family considered themselves lucky to have her at home, and expected to be waiting for several months for a heart. They were shocked to receive a call the next morning after she was listed, stating three was a heart for Emery. The donor heart was not a perfect match, and Emery experienced rejection upon receiving the heart. She was treated in CICU for three weeks, to strip her body of as many antibodies as possible to stop the rejection.

During her three-week battle, Emery was very sick, and the treatment she received was very new. Although she was able to go home after a month, the year following transplant was the hardest—trying to manage her anti-rejection medication, which caused serious side effects and a lot of stress.

Once her anti-rejection meds were tapered back, Emery began to thrive. She had five good years with her heart, surrounded by family and friends. Unfortunately, Emery’s condition deteriorated in the summer of 2015, and Emery passed away on September 4, 2015, while waiting for her second transplant heart. Her family is thankful to the donor family, and for the medical advances employed in order to give Emery an extension on her life.

Meet Mya

Mya was 15 months old, and on a family vacation to Disney World, when she went into heart failure. Up until then, she had been considered a ‘healthy’ child. Mya was admitted to a hospital in Orlando, Florida, where she was diagnosed with dilated cardiomyopathy. After a couple weeks away from family, friends and her sister, Anya, Mya and her parents returned home to Marietta, Georgia, where she received follow-up care at Sibley Heart Center.

mya_1Mya did well on medication for almost two years, until the morning of her third birthday, when she began to exhibit signs of heart failure again. Her parents took her to the hospital, and later that day, on March 2, 2012, Mya was placed on the transplant list as status 1A (most urgent). Mya waited in the hospital for her new heart for six months! Her hospital room became her home, decorated by all of her artwork, and the artwork of her friends and cousins.

Mya’s Mommy, Daddy, Grammy, Mom Mom, Grandpap, Pop Pop, aunts and uncles took turns staying with her, so she was never alone, and the nurses became part of her family, too. Thanks to all of this support, as well as her own amazing strength and positive personality, Mya was the strongest, most adapted child. She thrived, and actually enjoyed her stay in the hospital! The only time Mya ever showed any signs of being ready to leave is when she said to her Mommy, “The mailman is taking a long time to bring my heart!” That’s how she understood the situation; her old heart was broken, and a new one was coming in the mail.

Finally, on September 2, 2012, Mya’s family got the call from the hospital about her new heart! Only five days after her transplant, Mya went home to be with her family again. Now, Mya is doing great, and enjoys all the things that four-year-olds love, including swimming, gymnastics, her dogs and her family.

Meet Grace

grace_2Grace was diagnosed with dilated cardiomyopathy (an enlarged heart) at 11 days old. Despite a very weak heart, she compensated well for many years with the help of medications. But as time went on, her symptoms worsened.

Grace was placed on the list for a heart transplant on January 22, 2010. On April 4, 2010, Easter Sunday, she received the gift of a new heart! She is now 10 years old and doing very well.

Meet Riley

riley_2Riley was diagnosed with cardiomyopathy days after being born. She was immediately placed on the transplant list. After nine weeks of being hospitalized, Riley received the perfect heart for her. She is now 12 years old and doing wonderfully!!

 

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