About half of all children with Down syndrome are born with a congenital heart defect. Most common are holes between the chambers which can range from mild to severe. Symptoms include heart failure, difficulty breathing and failure to thrive in the newborn period.

Heart surgery is often recommended before the age of 5-6 months in order to prevent lung damage, though some babies have a difficult time putting on enough weight for the surgery because of the CHD. By all accounts it is the scariest experience in the world to hand your baby over for open heart surgery, especially when their heart is about the size of a walnut, but thankfully the procedure success rates hover around 99%.

Frankie was born with a very tiny Atrioventricular Septal Defect – a small hole between the top two chambers of her heart. According to her cardiologist most everyone has this in utero but it usually closes by the time a baby is born. Sometimes it doesn’t, even in the typical population. Frankie’s ASD was seen at her first echocardiogram at 3 weeks old and we’ve been keeping an eye on it ever since. This morning’s exam showed it still hasn’t closed but the doctor said it’s so tiny it doesn’t require any intervention. He also said that if we’re curious we could come back to have it checked out in a year or two…

Um, no thanks! Because holding your toddler down for an echo is about as fun as wrestling an alligator! But it’s worth it because we are now cleared from cardio!!!