Hypoplastic Left Heart Syndrome- The Story of Thomas Gray Fitzpatrick

We found out we were expecting our first baby in October 2020. We were beyond happy and began sharing the news with family and friends.

My pregnancy went well, I was feeling great other than tired. The months went on and we watched our baby grow with excitement- taking pictures every Saturday and measuring my belly. We decided not to find out the sex, as we wanted it to be a surprise at the birth.

I will never forget the day the clinic called after the 20 week scan. Something was wrong with the baby’s heart and we needed to go to the city for more detailed scans.

So we drove the five hours into the city and I tried to hold on to hope that things would be okay, but I was scared. The scans revealed the baby had hypoplastic left heart syndrome. We met with several doctors and specialists. They began to speak about terminating the pregnancy and I fell apart. If we carried to term, the baby would either need a series of heart surgeries or a heart transplant. Both options did not guarantee the baby would live and quality of life would be affected. We went home with this devastating news.

We spent over a week researching, speaking to doctors, and weighing out all the options. There were so many unknowns if we carried the baby to term. My gut and my heart were telling me to interrupt the pregnancy. We ended up finding out we were expecting a boy. It was bittersweet. A close friend asked me, “What kind of life do I want for our son? Short and peaceful or long and difficult?” I knew right away, short and peaceful. A heartbreaking choice no parents should ever have to make.

We had a baby blanket made and took maternity photos. We knew we would want anything and everything to remember him by.

Even though I knew we made the right choice for us, I was so scared to go to the hospital for the procedure to stop his heart and for the labour and delivery. How do you prepare yourself to end your son’s life and bring a still baby into the world? A much wanted and loved baby. I never knew I could feel so much love for another human being. We spent many evenings listening to his heart beat. I would lay in bed and feel him kick and move and talk to him. My partner cried tears of joy the first time he felt him kick.

We went back to the city to go through the most difficult thing in our lives. Although I was extremely upset, I tried my best to stay calm and happy when they did the procedure to stop his heart. All I wanted him to feel was my love and care in the final moments of his life. We had to go back to the hotel that night and be induced the next morning. No more kicking and no more heartbeat.

Labour and delivery was very difficult and painful. But I would do it a million times over to hold him again. He was born still March 11, 2021 at 5:46pm, weighing 1lbs 12oz. We spent a few hours holding him, kissing him, and singing to him. My parents were lucky to meet him too, as they came to the city with us for support. Then it was time to say goodbye. That day we held him for the first, only, and last time. We left the hospital without him, just a memory box. I had never felt so physically and emotionally empty in my life.

It’s been six weeks since his birth as I write this and I want to say it gets easier, but I sob for my little boy every day. I love him and miss him so much. It’s true when they say grief is love with nowhere to go. We have done so many wonderful things to memorialize his life, as have family and friends. I love that we have done this, but I wish we had our son instead.

I hate that I have baby weight to lose and no baby
Yet, I love that my body was capable of carrying him for all those months

I hate hearing “sorry for you loss”
Yet, I love the support of my friends and family during this difficult time

I hate reflecting back on the pain of the labour and delivery
Yet, I love that I brought him into this world and could feel every second of it

I hate that the day I said hello was the same day I said goodbye
Yet, I love that I got to hold him, kiss him, and sing to him

I hate that we made the heartbreaking choice to end his life
Yet, I love that we were able to save him from any pain and suffering

I hate that we left the hospital with a memory box rather than with our son
Yet, I love that we have memories of him to cherish forever

I hate that I will forever have a son that died
Yet, I love that I have a son

I hate that I am a grieving mother, heart broken
Yet, I love that I am his mother

We lost so many things, I will always grieve. I lost the person he could have been and the person I could have been with him. I am doing my best to navigate life carrying my grief. People don’t know what to say when a baby dies and I understand that. There are so many things I have heard that I hate, one of them being “you are so strong” and “you will get through this”. Do I have choice?

We want to try for another baby when we are ready. I feel so scared. I lost my innocence around pregnancy. I am doing regular counselling, reading books, and trying to take care of myself.

To all the mommas out there that are hurting, heartbroken, and lost, you are not alone. As I tell my story to others, I have heard countless stories of women who have lost babies for various reasons, yet no one really talks about. I have found comfort in connecting with others, it doesn’t lessen the pain, but allows me space to process it.

Remember your baby is loved, your baby is wanted, and you made a heartbreaking choice, but you did you for the right reasons for you, your family, and your baby.