condition: Tetralogy of Fallot

Kyla’s journey with Tetralogy of Fallot and Type 1 Diabetes

Just two days after Kyla was born, she was already fighting for her life. But boy, did she fight. Kyla was born with Tetralogy of Fallot, a rare condition caused by a combination of four heart defects that are present at birth. To keep her alive, Kyla had to have a shunt put in until […]

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Ava’s Adventure to a Mended Heart

Ava was born, prematurely, at Ruby Memorial Hospital in Morgantown, WV. She was born with Tetralogy of Fallot with Pulmonary Atresia, MAPCAS and VSD. After battling low oxygen numbers and “tet spells” Ava went into a code situation on Easter Sunday. Ruby said that there was nothing more they could do and sent her to […]

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Heart Strong

Through out my life my heart condition has taught me to be strong. When I was born the doctor and nurses discovered I had a murmur due to being born with a hole in my heart. I was diagnosed with a Ventricular Septal Defect and Tetralogy of Fallot. They gave the hole in my heart […]

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Cameron’s TOF journey

Cameron was born March 8th, 2017. Soon after he was born the doctors heard a very loud heart murmur that didn’t go away. We were sent to see Dr. Rosen with Nationwide Children’s Hospital and we were told Cameron would have to have open heart surgery. Then with his picture printout he drew us a […]

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Born with Little Squeak and Mighty Will!

Caden’s first visit to Nationwide Children’s Hospital was when I was 5 months pregnant. In utero, he was diagnosed with Deletion22q syndrome. This syndrome is known to cause a multitude of defects, facial deformities, immunity issues, learning deficiencies and more. At the time of his birth he had a serious heart defect called Tetralogy of […]

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Michael’s Story

We came to Nationwide Children’s in September, 2004, after 2 previous open heart surgeries at WVU Children’s Hospital in Morgantown, WV. Michael had been feeling sick for a few days and it was discovered he had MRSA, which was attacking his weak parts… his joints and his heart. He had an aortic pseudo-aneurysm and WVU […]

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Saving Amazing Grace

When Gracie was two, her family was told there was nothing that could be done for her and that they should take her home, love her and just keep her comfortable. Her family refused to take that as an answer. They sent her records to 25 major heart centers across the country offering double heart […]

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Christy’s Story

Hi my name is Christy, I’m 19 years old. I was born with tetralogy of fallot. I had surgery at 1 day old. Six months old. 2 weeks after I turned 16. I had a heart Cath in December 2015. They put in a valve. In 7th grade I started to get extremely sick with […]

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