At only 8-weeks old, Adelyn “Addie” Hughes, now 4, had her first open heart surgery. She was born with a congenital heart defect, which caused her to have a damaged mitral valve. Before she was 8-months old, she had undergone five open heart surgeries. Last summer, her family learned that her heart wasn’t working and she needed a transplant.
“I have the most heartfelt concerns for people who are going through a difficult situation when they are losing a child and they have an option to do an organ donation,” Hughes said. “They’re facing such a difficult choice … The ultimate outcome of that on the back end is affecting multiple people’s lives with these organs that are really hard to come by and get — especially for little kids who need them to save their lives.
“Her heart was too sick,” Hughes said. “Really the only option we had was a transplant and going onto the VAD … to help support her heart function, while she waited.” Addie Hughes needed to be in the hospital because she was connected to a machine that helped her heart work. That meant, the toddler missed out on hanging with her sisters and playing outdoors.While Addie was in the hospital, either Hughes or his wife, Rebecca, 37, would spend the day with her. Hughes was still working full time so he often went to visit on weekends. The couple has two older daughters, Kaliyah, 7, and Isabel, 5, and sometimes they could visit with their sister, too.
“They were nervous about putting it into Addie,” he said. “Ultimately they decided not to go forward with that heart transplant.” The Hughes family learned today that after a year in the hospital that Addie Hughes can go home. Her family feels grateful that another family donated a heart that has transformed their daughter's life.But every hour a nurse reported to the family on Addie’s progress. After an eight hour surgery, Addie started the recovery process. While she did well, she again had pulmonary hypertension. But doctors were able to control that after the first week.
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