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Stories of everyday strength from resilient hearts

Join us in celebrating our patients’ strength and resilience after complex heart surgery.

Heart Month Stories | Maddy Paul

The last time we met Maddy, she was still a baby, busy recovering from three complex heart surgeries at Boston Children’s. Now an active 3-year-old, Maddy has continued to thrive, and according to her mom, Morre, has surpassed all expectations.

What was your biggest concern for Maddy in those months after her surgeries?

After her heart was stable, I was concerned for her developmental health. She had been through a lot as an infant — and her doctors had warned me it might be an uphill battle for her in terms of development. They told me I wouldn’t know if she had any developmental issues until she started reaching or missing milestones.

How is she doing developmentally?

She’s really off the charts and has no developmental disabilities. At age 2 she was placed in a 3-year old class in her preschool. And now that’s she’s 3, she’s very advanced for her age, way beyond her years in vocabulary and comprehension. The last time she saw her cardiologist, Dr. Gerald Marx, he could barely believe it was Maddy because she had come so far.

How’s her heart health?

She’s had a few bumps in the road, but overall she’s doing great. Last March, she needed emergency surgery back home in Charlotte, because the leads to her pacemaker came off of her heart. And even though she’s 100 percent dependent on the pacemaker, the electrophysiologist there told me Maddy’s heart developed a heartbeat that held her until she got to hospital. He said he had never seen or heard of such a thing. So now we call her the bionic woman.

Last October, her doctors in Charlotte said she needed another surgery to replace her mitral valve based on echocardiogram results. They sent the results to Dr. Marx and he agreed. So, I scheduled surgery here in Boston and flew up, but when Dr. Marx saw her and did his own echo, he decided she didn’t need the surgery yet, and cancelled it. She will need the surgery eventually, but he wants to hold off as long as possible because she’s still growing.

What are some of Maddy’s favorite things?

She absolutely loves singing and performing. Her teachers say she always sings the loudest in the class and knows all the words. At home, she has a drum set, a recorder, a set of maracas, a guitar, piano and her own microphone. She’s a one-woman band. Although Maddy says she wants to be a heart doctor when she grows up, she definitely has a passion for the performing arts. She also loves dancing and eating — noodles, rice and chicken are her favorites.

Do you have any advice for other parents?

Maddy is doing great, but she’s definitely had some hiccups along the way. The important thing is to not let the bumps in the road get you down or make you feel like giving up. A congenital heart defect needs lifelong care, but it’s important to keep pushing through. There might be some ups and downs, but there’s still a light at end of tunnel. I always tell people that Maddy has never complained once about her condition and recovery, nor has she given up — so who am I to not give her the strong support, love and care she needs to grow emotionally and physically?

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