Jack’s Story

Jack

Recovering after surgery.

This blog post is written by Jack’s mom, Karen.

“It all started when I was 33 weeks pregnant - I went in for an ultrasound due to concerns about the baby's growth. Baby’s growth seemed fine and I went home thinking nothing of it until I got a phone call from my doctor that same day.

He explained my baby’s right side of the heart seemed a little larger than the left. Again, I didn't think much of it at first, I had my anatomy scan already and a scan after that one and there never was a concern. Then he mentioned I would be referred to maternal fetal medicine at the Royal Alexandra Hospital for an echo.

After I got off the phone with him, I did what I probably shouldn't have done, I went down the google rabbit hole. I did not like what I was reading and my anxiety skyrocketed. I was praying there must be some mistake and there is nothing to worry about.

I still remember the day I went for the echo and it was a long day. It was confirmed, my baby was diagnosed with HLHS (Hypoplastic left heart syndrome). The left side of his heart is severely undeveloped and not able to pump blood to the body efficiently. In a nutshell, he only has half a heart. This was not some minor thing, this one was major and one of the most complex heart defects.

My whole world came tumbling down, I already had my birth plan set in place but now everything would change. I had to switch to a high risk OB so late into my pregnancy. It took me 3 weeks after the diagnosis to finally see him and everything was so rushed. I had multiple appointments that consumed all my days leading to the birth of my baby. We had to meet with a multidisciplinary team and they would explain what would happen the day I would give birth as he needed immediate intervention. We were told he would require 3 open heart surgeries and the first one would be at only a few days old. I cried and cried.

I was already worried about him going in for one open heart surgery - now we would have to go through it another 2 times.  Instead of being excited, I was filled with anxiety thinking about all the unknowns. I cried the day I went in for my scheduled c-section. I couldn’t stop crying when I met my son. I held him for half an hour before they whisked him away by ambulance to the Stollery.

Jack, playing at home.

My son is now 11 months old, he has had 2 open heart surgeries so far. He will require a third one when he is 3-5 years old. He may need more in the future or a heart transplant. This has changed our lives forever.

I am thankful we found out before I gave birth - although late. We were able to make the necessary arrangements for his care. If this wasn’t discovered, he may not be here with us today. It was one of the most difficult journeys we have ever experienced and the journey still continues. He is thriving and such a happy boy. You would never know he had a heart condition just by looking at him or all that he has been through.

My advice for any families having to go through this, is to ask a lot of questions, get support, learn as much as you can, and advocate for your baby. What helped me during this tough time is joining facebook groups for my son’s heart condition and also the Stollery Hearts group. I’ve met other mothers going through similar experiences. They know what you are going through and give real advice. There is a whole community out there. You are not in this alone even though it feels like it sometimes.”

Your donations will help us provide specialized training for sonographers, helping kids like Jack receive their life-saving diagnosis at the 20-week anatomy scan. An early diagnosis gives families the time to prepare for the birth of their medically fragile child.