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Mabel’s heart story began at our 22 week anatomy scan when we learned she had a rare and complex congenital heart defect called Ebstein’s Anomaly. Ebstein’s Anomaly is a congenital defect affecting the tricuspid valve, where the valve is displaced downward into the right ventricle instead of sitting in its normal position. This causes part of the heart to become “atrialized,” making it harder for the heart to pump blood effectively. It is an extremely rare condition, affecting approximately 1 in 200,000. 

In Mabel’s case, her tricuspid valve is severely displaced, and throughout pregnancy we underwent countless fetal echocardiograms while preparing for the unknown. We were told that we would not fully understand the severity of her condition until after birth when her lungs began functioning on their own.

I was induced at 38 weeks so that the cardiothoracic team could be ready for her arrival. After she was born, Mabel was taken directly to the NICU for breathing support and spent 6 days there. 

Mabel’s diagnoses include:

• Ebstein’s Anomaly with severe apical displacement

• ASD 

• Multiple VSDs

• PDA

• Ventricular pre-excitation/SVT risk

• Cardiomegaly and right atrial enlargement

Because of the way blood mixes through her heart, her oxygen saturation levels have remained lower than typical, usually in the 80s. We monitor her oxygen closely at home and she takes medication three times a day for SVT prevention. 

When Mabel was born, we were told she would likely need open heart surgery by 4 months old. But over the last few months, this tiny girl has continued to surprise everyone! She has remained stable, continues to grow, and her team now believes she may be able to wait until closer to a year old for surgery which is something that feels nothing short of miraculous to us. They did warn us, however, that she will likely need multiple heart catheterizations before the big OHS. 

Today, Mabel is 5 months old. She is tiny but strong, resilient, and so deeply loved. Her story has already taught us more about courage, faith, and hope than we ever imagined possible.

We invite you to join our team in honoring this legacy. By supporting our team or walking with us, you're contributing to research that can save and enhance the lives of infants born with CHDs, as well as children and adults living with these conditions. Together, we're part of a 30-year story of hope—and we're writing the next chapter. Your support makes a significant impact, and for that, we want to say a heartfelt thank you.

Will you join us in making a real difference? Please consider supporting our team or walking with us. Every step we take together celebrates how far we've come and funds the miracles still ahead.