Written by Audrey Sims, Aiden & Jaxon’s mother

We are so blessed to have our 4-year-old identical twin boys Aiden and Jaxon. We live in Madison, a small town in southern Indiana. At our first appointment, we were shocked to find out we were having twins for our first children. That excitement quickly changed to worry when at our next appointment (at 14 weeks) it was discovered that baby A (Aiden) had a cystic hygroma, a fluid filled sac on his neck. This was a marker for many things, including complications like Congenital Heart Defects (CHD) or twin-to-twin transfusion syndrome. We ended up with both of these complications. At 19 weeks in our anatomy scan, they discovered that Aiden’s heart did not appear to have 4 chambers. Upon further research, our doctors discovered he had Ebstein’s Anomaly, a condition where the valve between the two chambers on the right side of the heart is displaced, which creates low oxygen saturations. We also determined both boys had Left Ventricle Non-Compaction Cardiomyopathy (LVNC), a type of heart muscle disease, Aiden’s being moderate and Jaxon’s being mild. Later, after birth, we found out that the heart defects were caused by a gene mutation of MYH7 and that my husband also has mild LVNC. 

At 22 weeks we had laparoscopic surgery for twin-to-twin transfusion, a condition only occurring in identical twins. We came out of that surgery with only a 60% chance of survival for both boys. My husband and I had been so overloaded in the past weeks that we sat in the hotel bathroom the night before my procedure and just cried together, praying for the best outcome. We decided that feeling sorry for ourselves wasn’t going to change the situation or help the boys be healthy; our only option was to be an advocate for our boys and educate ourselves.

The boys were born at 34 weeks on December 21, 2014, where we spent six weeks in the NICU. Doctors went back and forth on whether Aiden should have a shunt placed. We delayed surgery for Aiden and he lived with oxygen saturations in the 70s for the first 10 months of his life. We left the hospital with oxygen and monitor. This task felt undoable with two babies and all this equipment and my husband returning to work, however, we survived with little rest and two happy boys.  In November 2015, Aiden underwent went his first open-heart surgery, the Glenn. He lived and thrived with saturation levels in the mid-80s until October 2018 when he received his Fontan procedure with fenestration. We have continued to monitor Jaxon and watch for any change with his cardiomyopathy, as well as monitor Aiden’s right heart bypass and cardiomyopathy.

Both boys take aspirin daily to help with their conditions. We have been so blessed by the outcome for our boys that I want others to know that it can happen. Even though there have been many bumps in the road, children can be so resilient and amazing. We had to have a photoshoot with our Heart Hero Capes to show off the superpowers that live within my little miracles.

Without the support of organizations like Heart Heroes and our hospital, it would be hard to not lose hope and sanity as a parent.

I have had the opportunity to help some other heart families in our area with support and friendship.  It is hard when you don’t have anyone to talk to that understands your special situation. I didn’t have that support from other heart families when my boys were struggling. I encourage heart families to reach out and get support from others because the mortality of your children is a hard thing to cope with as a parent.