This moment is forever engraved in my mind, every single detail. It is hard to forget the moment your entire world collapses.

After weeks of absolute worry and sadness I realized that I had some power for my son’s outcome, and that was finding the best hospital and cardiologist.  This search led me to Boston Children’s Hospital, and to Dr. Rahul Rathod. 

Once this decision was made, I would take many trips to see Dr. Rathod for fetal echos at Boston Children’s from my Connecticut home, about 2 1/2 hours away. Around 32 weeks I moved to Boston to be close to Brigham and Women’s where I was to deliver my twins.  I had to leave my 4 year old and 2 year old at home with their father. It was heartbreaking, but Evan’s condition is critical, and his best chances were in Boston. They were born at 36 weeks and 2 days on April 27th, which is also my birthday.  The greatest gift I ever received was Evan skipping his first surgery as a newborn, which has the highest mortality rate among the 3 “planned” surgeries.  I stayed in Boston with Evan, while he was in the NICU, and had to send my 2 day old son, James, back to CT.  

A few weeks later, I drove Evan home to meet his siblings and to be reunited with his twin brother.  Life was hard and exhausting, but I can remember feeling so blessed, having both of my twins home.  During the first few months of Evan’s life there were several weekly doctor appointments, trips up to Boston, and weekly calls with Evan’s Boston RN and nutritionist.

At 4.5 months old, and 13 lbs, it was determined that Evan needed to have his first open heart surgery, the Glenn. This was by far the scariest day in my entire life. So many unknowns, and so much uncertainty.  Handing over my little baby to the nurses for open heart surgery was heartbreaking.  I was not sure if I would ever see my baby boy alive again. But, I knew, without this surgery, he could not survive.  After 6 days I was able to take Evan home. Again, we tried to live normally, despite having extensive doctors visits, and unwavering worry.  However, this life became our new normal. I soaked up every single smile, giggle, and milestone with Evan as I never knew what the next day would hold. There were a few heart jolting moments and trips to the ER, but Evan always pulled through. Just a few months shy of his 3rd birthday Evan had his second open heart surgery, known as the Fontan.  Again, he proved to be a superhero after being discharged in 6 days.  

Evan had been doing wonderfully post surgeries, but in April 2020, he complained of a tummy ache, which led me to put his pulse oximeter on his tiny finger. The machine immediately began to alarm as his heart rate was 260 bpm!  Dr. Rathod was on the phone in seconds, directing me what to do.  At the local ER, they restarted Evan’s heart, which thankfully was successful. Since this episode Evan is now on a beta blocker to help control any arrhythmia.   Every 6 months to a year, Evan has to wear a 24 hour heart holter to monitor his heart.  This is to assure his cardiologist that there are no undetected arrhythmias taking place.  Since that day in April, I lay my ear on his chest every night before I go to sleep. Evan’s heart is always on my mind, and always will be.

Eventually Evan will need a transplant.  No one knows when this will happen. We do know, getting a transplant is trading one set of problems for another.  The FORCE registry will help cardiologists, like Evan’s doctor, to get ahead of the problems with less invasive interventions before the issue becomes a really big one.