Facing a Rare Heart Condition: Mathew’s Story - Nemours Blog

CARDIOLOGY

Facing a Rare Heart Condition: Mathew’s Story

Mathew’s mother, Megan, was 28 weeks pregnant when she learned her baby had Tetralogy of Fallot (TOF), a rare, congenital condition caused by a combination of four heart defects that change the way blood flows through the heart and to the lungs, resulting in less oxygen-rich blood being carried to the body. Mathew would need surgery soon after birth and Megan’s OBGYN referred her to Dr.

Mehta at Nemours Children’s Health, Pensacola.

“As a first-time mom, I was terrified and spent countless hours Googling all the worst-case scenarios,” recalls Megan. “But Dr. Mehta reassured me with a simple, ‘I got you.’”

Sure enough, Mathew came home on Thanksgiving Day, four days after he was born.

Mathew’s Surgery

Three weeks later, Mathew’s oxygen saturation dropped into the 30s — he needed open-heart surgery and Megan requested a transfer to Nemours Children’s Hospital, Florida.

“The patient and family care at Nemours Children’s was incredible,” shares Megan. “Every member of the surgical team came by to introduce themselves and reassure us. Dr. Wearden spent a long time with us, answering our questions, explaining the procedure in detail and even drawing diagrams. During the surgery, we were updated every 20 minutes, which was incredibly helpful for calming my nerves.”

After a successful procedure, Mathew spent 17 days recovering at the hospital. His care team checked on him around the clock and included Megan and Mathew Sr. (Mathew’s dad) in the morning rounds. “I truly felt like part of the team,” says Megan. “I was supported and heard throughout the entire process.”

Continued Care From the Panhandle to Orlando

For the past eight years, Dr. Mehta has provided Mathew’s follow-up care. “Each year we leave her office with a sigh of relief and continued confidence that we are in the best of hands,” Megan says.

Because TOF requires lifelong care, the family moved from the Florida Panhandle to the Orlando area to be closer to Nemours Children’s Hospital.

“While we were apprehensive about leaving Dr. Mehta’s area, we knew that Nemours Children’s would continue to provide us with the best care, and we would be close to the hospital should Mathew’s condition become urgent,” shares Megan.

A Bright Future Ahead

Mathew is now a highly energetic and empathetic 8-year-old who is excelling as a straight-A student. He attends Heart Family Weekend Retreats at Camp Boggy Creek, where children with serious illnesses and their families can experience joy in a camp setting. Part of Camp Boggy Creek’s mission is to provide campers with inclusive activities that encourage independence and choice.

“It’s so hard to find support from people who may not completely understand what you’re going through,” shares Megan. “There are numerous congenital heart disease parent Facebook groups, but I get a lot out of Heart Family Retreat Weekends at Camp Boggy Creek.”

Raising awareness about congenital heart disease is a significant part of their family’s life. They volunteer at Ronald McDonald House and participate in the local Heart Walk where Mathew has raised over $1,000 each year for heart disease research. He was also recently selected at a local community Youth Heart Ambassador & Advocate.

“We’re optimistic about Mathew’s future,” shares Megan. “His daily positivity and infectious smile are what keep all of us in good spirits.”

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