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Jackson's Journey

Hypoplastic Left Heart Syndrome, diagnosed prenatally

Our story started at my 20 week anatomy scan, we went into the office that day excited to find out if our baby was a boy or a girl, we never in a million years expected anything but a healthy baby so when the doctor came in and said everything looked good except they couldn’t see everything they needed to see as far as baby’s heart. The doctor told us not to panic, that it could be nothing, but that they needed a closer look. After that it was all a blur.

After that I walked around in a fog while we waited for appointment after appointment to find out the official diagnosis and prognosis for the little boy growing inside of my belly. Hypoplastic Left Heart Syndrome, something I had never heard of before. Apparently what they couldn’t see at that first ultrasound was the left side of my son’s heart, that never formed. When we got this diagnosis I felt like that was the end of the story, I had no idea that someone could live with half a heart, but it was only the beginning. The 2nd half of my pregnancy seemed like it drug on forever but in a way I was okay with that because as long as he was in my belly, he was safe, it wasn’t until he was born that the journey really started. I was scheduled for a repeat C-section on a Monday but the Friday before that my water broke and Jackson Journey made his entrance into the world on his own terms. This was when we quickly learned that Jackson is in charge of his own path. Nobody could have known for sure how sick he would be when he was born, there was always a chance that he would need immediate intervention in the cath lab once he was born but miraculously that wasn’t necessary.

 

When he was 4 days old he had his first open heart surgery, the hybrid procedure. Everything seemed like it had gone well and he seemed to be on the road to recovery but then we encountered our first bump in the road and things quickly changed. It was apparent that this physiology was not going to work for him so he had to go back to the operating room and have his 2nd open heart surgery at a week old, the Norwood procedure. This was a much more complicated surgery, it seemed like he was in the OR for days this time but I think it was actually around 12 hours from the time they took him to the OR until he was back in the PICU. This time when we first saw him his chest was still open and remained that way for 3 days before they were able to take him back to the OR for the 3rd time to close him up and finally get back on the road to recovery. After that he had some little hiccups in comparison to everything else he had gone through and we were able to take him home for the first time when he was 3 weeks old! We were officially in the interstage period which is very risky and important to keep him healthy and growing which luckily he managed just fine during this time and was able to have his stage 2 surgery, the Glenn on November 29th, 2017 and he surprised everyone when he went home only 4 days later!

 

Jackson is now a happy and loving 8 month old who is just building his strength back up so he can get into everything like a normal toddler and play with his 2 big brothers. Jackson never lets his half of a heart slow him down and he brings such joy to everybody around him. He has showed me what strength really is and he amazes me every single day.

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