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Mother of baby born with congenital heart defect to others: 'You are not alone'

Don't be afraid to ask your doctor questions, and most importantly, never give up on your child's health.

Finn Blumenthal
Finn BlumenthalRead moreCourtesy of Kelly Blumenthal

My husband and I struggled with infertility for five years when we finally decided to try adoption. We were six months into the adoption process when we were shocked to discover that we were pregnant! Thinking this was our only chance at parenting, we threw ourselves into the role and were thrilled when our son Mason arrived in 2013.

Then, just five months after Mason was born, we were pregnant with another baby boy! We were so excited to grow our family and welcome another little one. But at our 19-week anatomy scan, it was discovered that our second son, Finn, had heart disease. The news devastated us.

We went to every hospital in our area searching for a solution. The outlook wasn't good. Each doctor gently told us that there was little likelihood that Finn would survive birth. But we refused to give up.

We finally found a hospital that would take care of us and our son, and on Jan. 2, 2015, Finley Noah Blumenthal was born. He was alive, but we had a long road to recovery ahead.

As a new mother, not only was I busy keeping my first son happy and occupied, but I was now also focused on learning as much as I could about Finn's condition so that I could help keep him alive. I asked our doctors millions of questions and conducted my own research for eight months in the hospital, as he endured 10 surgeries and one open heart surgery.

By August 2015, Finn was finally able to come home – something most of the doctors we met with didn't think would be possible. But Finn required more support than most newborns, including taking multiple medications every day, feedings through a G-tube attached to his stomach, and constant monitoring of his oxygen levels, heart rate and pulse.

Though this period was stressful, it was also a joyful time. Being home allowed him to make memories with his brother and our family; he was finally able to enjoy time outside and play with our dog, Summer. He quickly began to grow and reach milestones like sitting up on his own, and even taking his first steps.

But after we'd been home for about 11 months, my husband and I realized that something was off. Finn had been doing so well, but in the winter of 2016 his progress seemed to stall.

My gut told me it was his heart, and shortly after his second birthday, another trip to the hospital confirmed what I had suspected. Finn's little heart was overworked, and it was time to plan his second open heart surgery.

Because he was such a complex case, we searched the entire country for a hospital that could give him the absolute best care for his needs. In the end, we chose the Children's Hospital of Philadelphia.

Finn's heart was in dire need of repair so that he could breathe easier and pump blood through his body properly. CHOP's cardiology team decided Finn needed a Fontan procedure before the impending cold and flu season, which didn't give us much time to hesitate.

On Sept. 14, we handed Finn off to his surgical team. His procedure was estimated to last between five and seven hours. There was nothing we could do but wait and reflect on Finn's life and everything that brought us to that point. My husband and I made peace with the fact that there was never going to be one right answer for Finn's future – we just had to try and make the best decisions we could along the way.

Just before the five-hour mark, the doctor came out and told us that the surgery was a success, and that Finn's heart was finally relaxing. We were incredibly relieved.

Finn's recovery has been successful and he finally has the energy he needs to be a normal three-year-old kid.

For other parents of children with congenital heart defects, know that you are not alone.

Don't be afraid to ask your doctor questions, and most importantly, never give up on your child's health. You're stronger than you think, even in your weakest of moments. Appreciate the little things and savor every moment, even during times of struggle. You'll look back later and be so proud of how far you've come.

Finn will need additional procedures throughout the rest of his life to maintain his heart health, but as new technologies are introduced, and cardiologists continue their life-saving research, Finn's chances at a better, longer life will increase.

This life-saving research is the reason we support the American Heart Association and its 2018 Philadelphia Heart Ball. Funds raised at the Heart Ball will directly support local hospitals to save lives like Finn's, and the more we support them now, the better chance Finn and other like him have of a healthier adulthood.

It's so wonderful to have our bright, energetic little boy back, and as his parents, we're committed to doing everything we can to make sure progress is made not just for him, but for victims of heart disease everywhere.

Kelly Blumenthal lives in Stafford, Va. with husband, Michael, and sons, Mason and Finn.

The American Heart Association's mission is to build healthier lives free of cardiovascular disease and stroke. February is Heart Month, and we encourage readers to learn more about what they can do to improve their cardiovascular health at www.heart.org.