Hearts for CHD Warriors

February is heart month and as a mom of a CHD child this is very dear to me. I wanted to share our story for two reasons, first for me to remember our journey and second for all the moms like me who left the doctors office after a scary diagnosis feeling like you were on an island only to run home, google, and cry while reading what you found, so here is HOPE!

Our story is a little different, most CHD babies are diagnosed in utero or shortly after birth, our Ella has always been unique so her heart story would be no different. I had a normal healthy pregnancy, with only one ultrasound because there were no red flags. Ella came at 38 weeks and I had a pretty normal delivery. There were a few small things her first year that I look back on now and see the dots connect but nothing major. And I’ll share more about that on another post.

When Ella was almost 4 we were living in Los Angeles and she had already had two sets of tubes after numerous ear infections and was always terrified to go to the doctor. At one of her ear infection appointments we saw a different doctor on call and the doctor said I may hear a murmur but it may not be anything. She never said anything else about it. Fast-forward a month later when we moved to Nashville, Tennessee and I took Ella for her 4-year check up with her new pediatrician. I mentioned the murmur at her last appointment, they also took her blood pressure, which was extremely high, so he referred us to a cardiologist at Vanderbilt Children’s Hospital.

Cardiology Appointment: So we met with Dr. Moore who did an EKG and echo, but because Ella was so squirmy he could not get great pictures but enough to know that she had a coarcation of the aorta (a narrowing in her aorta) and a bicuspid valve. A week later she went for a sedated MRI to get a better look. Again this is usually diagnosed early on and I was in shock that she was 4 and we were just learning all of this. As a mom I was thinking back to the nights we let her cry it out as an infant, or should she had been in dance and gymnastics, all the mom guilt thoughts. I also found myself just mad that no one had ever caught this! We moved a lot so she had 4 different pediatricians and none of them ever heard a murmur. I later spoke to my sweet friend Stevi in LA and I’ll never forget her saying God is sovereign and we don’t always understand his timing but he’s got her.

After her MRI we were told she would need open heart surgery but were given a couple of different options of doctors and each doctor has their own repair technique, so I was even more overwhelmed. I called my friend Wendy who is an ER doctor at Cedars-Sinai to ask for her advice. She suggested meeting with a pediatric cardiologist friend of hers out there for a second opinion, so we hopped on a plane and flew back to LA for a second opinion. After he looked at her MRI he said “the best guy for this job and her condition is a friend of mine from med school and he actually works at Vanderbilt Children’s, how far do you live from there?” He just knew we lived in Tennessee but did not realize Vandy was in our back yard. It was actually the same surgeon who had been referred to us by another source, so for me it was my God wink that we were making the right choice.

Cardiac Surgeon Appointment: We then met with Dr. Bichell where he explained the surgery. Of course in my brain this was how I understood it…where her coarctation was or narrowing, he would just cut the narrow part that was restricting blood flow and sew it back together. Sounds easy! Until it’s your child and they explain the ventilator, chest tube and how they will stop her heart for a moment to do the repair. Everything was very overwhelming and of course as a mom I had researched and read everything that could go wrong…don’t do that! I’ll share more about her surgery and recovery in my next post but I’m so thankful the support we had leading up to that day!