When Paige didn’t gain weight between her two- and four-month-old appointments, doctors began treating her for acid reflux. But when her gastroenterologist noticed that her breathing was distressed, he called for a chest X-ray. It showed something her parents never expected: a very enlarged heart, which led to a diagnosis of Dilated Cardiomyopathy. Their newborn baby was in heart failure.
“We were in complete shock,” said mom Kellye. “After that day, we spent about six weeks in the hospital, trying to wean her from medications while maintaining her weight. It was scary. They told us that with her condition, a third of kids can take meds, a third can kind of hang out where they are and a third will not make it.”
When the heart failure clinic at Egleston determined that Paige’s kidneys were failing at 8 months old, they said it was time to list her for a heart transplant. Although finding a match would be somewhat easier because she hadn’t had any surgeries yet and her enlarged heart had created ample room in her chest cavity, Kellye and her husband Nate were told they would likely have to wait for three to six months for a heart. They waited just 16 days.
“While we were waiting, her heart function continued to deteriorate,” Kellye said. “She kept throwing everything up, and she eventually switched to getting all of her nutrients through an IV. On September 29 they called to say they’d found a heart. Dr. Kanter did the surgery, and we celebrate September 30 as her ‘Heart-iversary.’”
Another celebration was taking place at the same time. In the midst of Paige’s heart transplant journey, Kellye had learned she was pregnant with twins. The girls were born in January, just a few months after doctors sent Paige home with a new heart.
Kellye said that one of the most important things to her and Nate about Paige’s care at Sibley was that above all, the doctors and staff understood that this was their baby.
“They were caring and compassionate, walking us through the seriousness of her diagnosis but helping us hold on to our hope at the same time,” Kellye said. “It’s a super dark day when you realize you’re putting the life of your 5-month-old, who you prayed and prayed for, into someone else’s hands. But they patiently answer every question, cry with you, pat your shoulder and provide a true sense of comfort and security.”
Every doctor and nurse at Sibley is special to them, Kellye said, and some memories stand out in particular. Dr. Iannucci, who was a resident during Paige’s initial hospital stay, made them feel like Paige was his only patient, checking on her daily before rounds. Dr. Clabby helped the new parents focus on making Paige’s life as “normal” as possible – even in the hospital – by focusing on milestones like finding her toes and encouraging ventures outside her room.
She helped us to feel more relaxed and helped us to see Paige as our baby and not just a heart patient,” Kellye said.
These days, Paige, who just turned 9, is thriving. She has no restrictions on her activities, and she enjoys playing softball and basketball, along with establishing herself as the oldest (and maybe the boss?) of her twin sisters, Avery and Ella, and 3-year-old brother, Cole. This summer she attended Camp Independence, Children’s weeklong summer camp experience for children and teens who have been diagnosed with kidney disease, are on dialysis or have received a life-saving organ transplant. Next year, she has set her sights on Camp Braveheart for kids with cardiac conditions. The Children’s camps, which are free to campers, provide therapeutic, recreational and medically-supportive camp experiences for children with serious illnesses.
Kellye said letting her go to camp was a little scary, but she resists treating Paige like “the sick kid” or making decisions based on what may be in store down the road.
“We want to take advantage of opportunities like this, where there are doctors and nurses on staff who are trained to care for Paige,” Kellye said. “It was great for her to have some of her own time with kids her age, who have similar experiences. She loved all the fun camp things they did, and she was even excited about the dance because she got to dress up and go to a party!”
Kellye has two pieces of advice for parents beginning the heart warrior journey: 1) There’s no such thing as too many questions and 2) be able to accept help.
The people at Sibley have your back,” Kellye said. “Trust that they are there to do what’s best for your child. And they are going to trust you too because you know your child best. You won’t get pushed aside. It truly is a team effort.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.
Gratitude quote: “Gratitude is so many emotions rolled into one; it’s joy, relief, peace and comfort. So to express gratitude with a simple ‘thank you’ sometimes doesn’t seem like enough. How do you say ‘thank you’ to the doctors and nurses who love and care for your child (and your family) day after day so selflessly? How do you say ‘thank you’ to the family who shared the gift of life in such a painful time? We choose to show that gratitude by living life to the fullest and making every day count!”
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