Adeline was diagnosed the day after birth with Long QT Syndrome Type 2. Now, Adeline is one of ten Children’s Miracle Network National Champions, and is sharing her LQTS story on a Cheerios box in Costco throughout the month of May.
“Adeline was born a healthy, eight-pound little girl,” says her father, Aaron. “But the day after she was born, she couldn’t keep her temperature up, and a nurse heard an abnormality while listening to her heart.”
At their small hospital, the cardiologist said that sometimes babies had arrhythmias – and that there was nothing to worry about. But Aaron, who works at Duke University, knew that he wanted to go see a specialist. “It turned out to be one of the most important decisions I’ve ever made,” he says. “Once she got to the PCICU at Duke Children’s Hospital, and they ran tests, we learned that she had Long QT Syndrome – and my medical history suggested that I also had it.”
Adeline’s doctor, Dr. Salim Idriss, drew out a picture of her heart and its channels on a sheet of paper to explain Long QT Syndrome to Aaron and his wife. “He said he worked with an organization called the SADS Foundation, and that we should get in contact,” says Aaron. “We were immediately connected with another parent of a child with LQTS. It’s a unique experience to have these conditions – and so important to connect with others who truly understand the unique journey we’re on.”
Aaron and his family are immensely grateful for the care they receive at Duke Children’s Hospital. “The nurses and doctors are incredible,” he says. “We were in the hospital with
Adeline for a month. We learned how to do ‘parent things,’ like changing diapers, from nurses. They taught us how to give a young child oral medication every six hours, and what to do if she wouldn’t eat, or threw up her medication.”
“The best way to protect her is to help her live a full, happy life and ensure that the infrastructure is there to allow her to do so.”
At just seven days old, Adeline received a therapeutic pacemaker. This required open heart surgery. “The team at Duke taught us how to care for her wounds,” says Aaron. “And
Dr. Idriss would show up late at night, after a three-hour drive from another part of the state, to check on us. Some of the nurses even thought he was Adeline’s grandpa because of how much he cared about her.”
Today, Adeline is eight years old. She loves musical theater, school, Girl Scouts, tumbling, and playing with her little sister. “She is a happy, healthy little girl,” says Aaron. “Everyone knows her story – from her school to her camp counselors – but the best way to protect her is to help her live a full, happy life and ensure that the infrastructure is there to allow her to do so.”
Adeline is a champion for Duke Children’s Hospital through Children’s Miracle Network in gratitude for the incredible ongoing care they receive. This year, Adeline is one of ten National Champions to appear on Cheerios boxes in Costco this May. “This is such a great opportunity to raise awareness about Long QT Syndrome, about the care at Duke Children’s, and raise the visibility of organizations like SADS,” says Aaron.
Aaron sees their diagnosis as a gift. “It took me many months to shift my mindset, since the diagnosis is very scary,” he says. “But this diagnosis is one of the greatest gifts we’ve received: our fist symptom wasn’t death, as it is for many families. We know what we have and now we have the tools we need to live a full life. By a miracle, we found this diagnosis on Adeline’s first day of life and can protect her.
And thanks to Adeline, I’m also protected. My daughter is my guardian angel. I’ll never take that knowledge for granted.”