Erica Thayer   |   March 18, 2019

Tetralogy of Fallot: Scarlett’s Story

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Life On Autopilot

Scarlett Rayne was born in 2017 with Tetralogy of Fallot (TOF). The events that led up to the day she was born her mother, Rebecca, will forever remember. She did not even think she would be able to get pregnant again. Scarlett was her “miracle baby” and she was ecstatic with the news of a new baby girl on the way. Upon finding out Scarlett’s diagnosis at 17 weeks, Rebecca and her family were thrown into a whole new life of planning for a baby that would need an open-heart surgery soon after birth. “Life felt like autopilot for the rest of my pregnancy, not truly letting things sink in, feeling like the worst dream I couldn’t wake up from,” Rebecca remembers.

“I will forever remember walking into the room after her surgery and my whole world came tumbling down. Seeing her connected to the machines, no parent should ever have to see their baby like that.”

The reality of Tetralogy of Fallot

Scarlett was born, and after a day and a half in the NICU she was back in her mother’s arms. “She was the perfect baby, never cried and was always all smiles,” Rebecca said. At 2 and a half months old Scarlett had open-heart surgery. “I will forever remember walking into the room after her surgery and my whole world came tumbling down. Seeing her connected to the machines, no parent should ever have to see their baby like that.” Even more so, what originally was expected to be a quick recovery ended up being a 3-month long process. “Minutes felt like days. I lived in the hospital next to her the whole time,” Rebecca said. Finally, Scarlett had a breakthrough and was able to go home to her family.

Scarlett and her family have been through so much: open-heart surgery, lung surgery, infections, brain bleeds, the list goes on. As a result, “She is one of the strongest most amazing little girls I’ve ever met, and she endures all the pain with a beautiful smile!” Rebecca said. Scarlett and her family have endured more than any family ever should have to. Help us #defeatCHD through research in our lifetime so that other families do not have to go through the reality that is CHD.

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