Published on August 24, 2015

“Your son might not make it through the night.”“Your son might not make it through the night.”

“Your son might not make it through the night.”

Those are words no parent ever is prepared to hear.

jonathansontoday

Jack DeCoste, today.

Jack was our first child. My wife, Kate, and I could not wait for his arrival.

Kate had a normal pregnancy, and the delivery went well. But, when Jack was administered his APGAR test to check his vital signs, one of the nurses noticed his chest was retracting significantly with each tiny breath. He was immediately rushed into the Intensive Care Unit.

The medical team devoted the next five days trying to determine what was making Jack so sick. We were told to prepare for the worst, that we should measure our son’s life in hours.

Instead, he fought and made it to day five. But then, Jack’s condition drastically deteriorated. Doctors decided to rush him to Boston Children’s Hospital, and a special transport team was sent. They were not sure he would survive the ride.

Jack was given last rights. I kissed him on his head and told him I loved him.

“Fight, little man” I whispered. I told him his mom and I wanted him more than anything else in the world.

Upon his arrival at Boston Children’s Hospital, a team of more than 15 doctors and nurses surrounded him. They quickly determined that Jack suffered from TAPVR, Total Anomalous Venous Return . This is when the four veins that transport blood from the lungs to the heart do not attach normally to the left atrium. Instead, they attach to the wrong part of the heart.

Jack’s oxygen-rich blood was returning to the right side of his heart and mixing with oxygen-poor blood. That was causing him to get less oxygen than his tiny body needed to survive.

Our son was rushed into open-heart surgery, and he then spent the next 73 days in ICU. During that time, he received blood transfusions every few days to aid his recovery.  During his open-heart surgery alone, the heart-lung bypass machine required five units of blood just to prime it.

With each transfusion, Jack would get a little stronger as his vitals improved.

On day 78, he was moved out of the ICU. On day 82, he received his last blood transfusion before being released to go home.  By then, we had stopped counting how many pints of blood helped save Jack’s life.

Today, Jack is a healthy 8-year-old in first grade. He loves video games and hanging out on the swings and slides of a local park. You would never know by looking at him how sick he once was and how close we came to losing him. He is a vibrant, energetic little boy with a great sense of humor.