Down Syndrome and Double Open Heart Surgery

April 21st 2015, the day my life changed forever.

 

Jimmy and I went in for our gender ultrasound and were wishing for a little girl. A few minutes in the tech revealed it was a baby boy and I felt a smidge of disappointment, little did I know that it would be the least of my concerns and my whole world was about to be turned upside down.

I could tell by the look on the techs face that something wasn’t right and when she excused herself to get the doctor my heart sank. A few moments later the doctor came in and reviewed what the tech had been focused on and spoke the words I’ll remember forever: your baby’s heart didn’t develop correctly. I immediately burst into tears imagining the absolute worst and thinking my baby wouldn’t survive at all.

 

She explained that it was serious but could be corrected with open heart surgery shortly after birth. She then went on to tell us that his heart defect was very closely associated with Down syndrome and that he showed other soft markers as well. The rest of the appointment was a blur and I honestly don’t even know what else she said that day, all I could do was hope and pray for this sweet boy who had the world against him already.

 

A week later we went to a pediatric cardiologist where he was officially diagnosed with Complete AV canal and a week after that I had my amniocentesis which confirmed his Down syndrome.

 

We were told our son wouldn’t need heart surgery until around 6-8months of age. However, at around 5 weeks old, Leighton started drastically losing weight and could barely finish a bottle in an hour. He was admitted to the cardiac ICU and put on a nasal feeding tube. We thought it would just be a short stay to get his weight under control but little did we know we would be facing the hardest 4 months of our lives.

 

After testing, Leighton was classified as already being in severe heart failure and his liver was almost double the normal size. His body was failing him at 5 weeks old. He would spend the next three weeks trying to gain weight before his first open heart surgery on the day he turned 8 weeks old. The surgery was a success, or so we thought at the time. He continued to decline and lose more weight and his skin was becoming bluer.

 

Finally, a month and a half later they decided he needed another open heart surgery or he simply would not make it.

 

There’s something about handing over your baby to a doctor knowing they are about to literally cut open your baby’s chest and then cut open his tiny heart. It still sends shivers down my spine. His second open heart surgery was an actual success and within a week he had gained 2 pounds and was sent home with us.

We left that hospital with a feeding tube, 9 different medications, and far too many painful memories but alas we got to leave (a privilege, not every heart warrior gets). I stayed with Leighton in the hospital every single day of stay and slept in a chair for nearly 4 months, living off coffee and hospital food but I’d do it again in a heartbeat.

 

A mama will go to the ends of the Earth to make sure her baby feels safe and loved.

 

While I would never wish my baby to have congenital heart disease, I wouldn’t change a thing about our journey and am forever grateful for the lessons I have learned through him and he continues to teach me every day about strength and true love. So a big hug and kiss to you Leighton James and all the other heart warriors!

Jessica is a special needs mom, a blogger and an instagram sensation.  Leighton can be found, cute as can be, on Jessica’s instgram @liveloveleighton