Erica Thayer   |   April 27, 2020

TOF, PA, MAPCAS Survivor — Mia’s Story


As soon as the pregnancy was confirmed, I had this feeling that something was going to go wrong.” 

Motherly Instinct

Shelby had a motherly instinct that something was not quite right when she found out about her pregnancy. She thought she would have a miscarriage or something would happen. At her 21 week ultrasound her feelings would be confirmed. She was told the baby’s aorta was thicker than normal but that it was very common and no big deal. Still, they wanted her to come back for another scan just to be cautious. 

There she was told it was not normal, it was bad. She would need to see a specialist. The specialist first thought her baby had Truncus Arteriosus, but she actually had Tetralogy of Fallot (TOF) with Pulmonary Atresia and MAPCAS — “the most severe form of TOF.” 

Doing Well

tof, pa, mapcas

After countless appointments and ultrasounds, her daughter, Mia was born December 4th, 2019.  After an eight day NICU stay she went home and was thriving. However, she was not cured as there is currently no cure for CHD. 

She has had multiple hospital stays and after the second stay she came home on oxygen. Mia went to the cath lab in January and had open heart surgery and another cath in February. Her last hospital stay was almost two months long. She currently has a g-tube because she only eats a small amount by mouth but is otherwise doing well. 

As Long As They Are Here

Sweet mia, a CHD, TOF, PA, and MAPCAS survivor Mia is now home with her family. “She has come a long way, but she still has a long journey to go through. There is something about being a special needs parent that makes us feel so honored. Mia is really the light of our life. At first it may seem like your world is ending, but once you have these babies nothing in the world matters just as long as they are here,” Shelby said. Help us find a cure for CHD so that babies like Mia can live the long and healthy lives they deserve. Become a monthly donor today

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