written by Heather, Alanna & Natalie’s mother

Both of our girls, Alanna & Natalie, were born with Ebstein’s Anomaly, a rare heart defect of the tricuspid valve. They also have Atrial Septal Defects. Natalie, our youngest, was diagnosed during pregnancy. Alanna wasn’t diagnosed until age 3, when we decided to have her see a cardiologist after Natalie was born – just as a precaution. Her diagnosis was quite a shock, as we had been told that Ebstein’s isn’t known to be genetic.

Natalie spent a month in the CICU after she was born. Despite all the attending physicians thinking she would absolutely need surgery right off the bat, Natalie defied the odds and got herself out without any procedures. We are so thankful for that! Our team thought she’d need surgery by age 4-6 months, but her oxygen saturations miraculously improved enough to postpone it. At two years old, in June of 2017, Natalie had surgery at the Mayo Clinic in Minnesota, one of the best hospitals in the world for treating Ebstein’s Anomaly.  The surgeon was planning on doing the Glenn and a partial ASD closure but wasn’t sure if he’d be able to repair her valve until he was in there and could actually look at it. Once he was in, he decided to go for it and did a beautiful job! We’ve gotten so many compliments from cardiology teams since then on how good of a repair it was, so we are very thankful! She no longer needs to be on oxygen and really doesn’t have any restrictions. She has SO much energy – I can barely keep up with her

Alanna’s valve is just as severely displaced as Natalie’s was prior to surgery. Her ASD isn’t as big, though, so her sats are pretty good. After her last cardiology visit, our team at Children’s Hospital Colorado thinks we should do a cardiac MRI to try to get a better idea of heart function on the right side – so we have that scheduled for July. Based on those results, we may have a better idea when she’ll need her surgery.

It was such a shock for us getting Natalie’s diagnosis – but then to get Alanna’s, we were just floored (same with all our cardiology teams). The silver lining for me, though, is they’re in this together and have this extra special bond as sisters.

We have met so many amazing heart families on our journey and are so grateful to be connected to them.

And we are so thankful for the amazing organizations like Heart Heroes, Inc., that bring families together, help support them, and help fund much-needed research.