We were finally ready to start our family and I got pregnant after 3 months of trying. We were so happy to find out we were pregnant in early November 2020. Our due date was July 30, 2021. This was my first pregnancy and our entire family was very excited.
We were nervous about any genetic issues or anomalies because of my age. I am 36, however, our obgyn laughed at this saying a lot of his patients are in this age group having healthy pregnancies. Still, we paid for a NIPT test very early into the pregnancy so that we can confirm our baby was ok. We had a good result from that test with no high risk anomalies. We also wanted to find out the sex at that time. We were ecstatic to be having a baby boy.
At all of our ultrasounds and check ups we received the news that assured us that our baby was healthy and that there were no concerns. Words like “a strong heartbeat” and “healthy baby” came at our 8 week and 14 week ultrasounds. Once I crossed the 4 month mark and we had all our tests come back “normal”, we then started to tell everyone we were expecting. We never could have imagined what devastating news we would find out about our boy later on.
At our 20 week anatomy scan (I had to go alone because of Covid) the technician told me towards the end that she wanted to get the doctor to look at something. I immediately got worried because of the way she announced that she needed to get the doctor. I now know that this is a bad sign when the doctor is needed during an ultrasound check up.
Once our doctor came in he was speaking in technical terms to the technician. He finally told me that the left side of the babies heart is smaller than the right but he is not concerned. He scheduled me to see the fetal echo cardiologist the next week. We were worried during that week of waiting to meet the specialist but we held onto hope that came from our doctor who said he is not worried.
Again, due to covid, I was alone during the meeting with the fetal cardiology specialist. She was very quiet through the entire ultrasound and didn’t say much to me. When she finished she said, I’ll be right back with my findings. She came back into the room with a diagram of a normal heart and a heart with “hydroplastic left heart syndrome”. She pointed to the diagram and said your baby has “hydroplastic left heart syndrome”. I didn’t know what this was or what it meant.
Suddenly the words from her mouth hit me so hard. “This isn’t curable”, “major heart disease”, “consider terminating this pregnancy as it’s still early”, “this is the worst of the worst”. I was so shocked I was overcome with emotion. I kept crying uncontrollably in the room with her because of how shocked I was to hear this devastating news about our boy. The thought of loosing our baby boy and terminating our pregnancy was too devastating to comprehend. How could this be happening when all of our tests and check ins up until this point got a clean bill of health?
I apologized to her because I couldn’t speak I was crying so much. I finally asked her what our options where. There had to be a way of fixing this. She wrote down on the diagram 3 things:
- Referral to Sick Kids hospital for their team of experts to review her findings
- Consider terminating the pregnancy while it’s early, and…
- To get an amniocentesis to rule out any other abnormalities.
All I remember is going to the bathroom and holding onto the wall as I cried. It was the most devastating news of my life. My heart was completely ripped apart thinking of our baby boy having this incurable heart disease.
I called my husband and could barely get the words out of my mouth. He was so concerned about me driving that he stayed on the phone with me until I got home. He was devastated by the news. We decided right there we would hold onto the hope that Sick Kids proved she was wrong. Somehow by the grace of god, she was wrong and this was a misdiagnosis. We could not accept this news at all.
We immediately met with our doctor who said that this isn’t the time for doom and gloom, this is the time for more research and to get to Sick Kids to see what their cardiology team saw. Our doctor said he has seen HLHS in babies at our gestational phase and “this was not our babies heart”. His words got us through the next few days waiting for our appt with Sick kids.
At Sick Kids 3 days later, the doctors gave us the best news of our lives. Our boys heart did not have HLHS. He did have a smaller left side, but it was functional and the left ventricle was fully grown the length of the heart. This was a deciding factor in babies with HLHS.
Our boy had a very bad heart anomaly, a “coarctation of the aorta”- it would require a surgery when he was born but that one surgery would fix his heart and he would then live a normal happy long life. We were beside ourselves with relief. We had a check in at 28 weeks to ensure everything remained ok but the doctors were confident his heart would grow properly and remain in this condition. We were so thankful that our boy would be ok. He was going to make it.
During the next two months, I changed my diet to only eat “heart healthy” foods for our boy. I worked out almost every day and walked everyday. I needed to do everything I could do to help our boy’s growth and heart development. I was determined even though the doctors had told me there was nothing that I could do to assist his heart growth.
When our 28 week check up came up, I was confident that our boy’s heart would have stayed in the same condition that was diagnosed by sick kids. I had prayed that it would. I felt him kicking me and moving everyday and I knew that together, we would make it through this challenging time.
At the check in with Sick Kids, we got the devastating news that our boys heart had gone down the wrong direction. Not only had the coarctation become severely hydroplastic but his left ventricle barely grew since our last check in. His heart was now HLHS. Our worst nightmare had come to life. We were completely devastated.
We now were told that the surgeries available to him were only palliative. More babies were surviving with these surgeries but having life long issues if they survived and would need a heart transplant. We knew we couldn’t put our baby through that. To us, it was clear we couldn’t bring this baby to term knowing his chances at surviving and what he would be put through in his short life.
We decided we would give birth to our baby boy in palliative care at the hospital. I wanted to meet him and tell him how much I loved him for as long as he would be with us. It was the most difficult and painful decision of our lives.
I was induced a few days after Sick Kids gave us the sad news. After 24 hours, we got to meet our baby boy, who was born still, and say our goodbyes. He was so perfect and peaceful looking. He looked just like his daddy with big eyes and long legs. I was so happy to finally meet him and hold him in my arms. Saying goodbye to him was the hardest thing I’ve ever done. I didn’t want to let him go. We miss him so much and I think of him everyday.
We find comfort in knowing he only knew a short life of happy kicks and lots of love. He knew none of the pain and suffering that he would have known from the path he was destined to go down.
We went home with his foot and hand prints, some of his hair, and the blanket and hat he was wearing.
I am finding comfort online reading the stories of other women who have been through what I have. I don’t know how I would have gotten through the last few weeks without the stories and forums I have found.
I want to share my story in the hopes it helps someone else find comfort. I am struggling to cope with what happened and with our loss but I know that with time and support, I will be able to accept this pain. I know my angel baby is at peace and that gives me the greatest comfort.
Mommy will always love you, Lachlan, and you are in our hearts forever.
This is an anonymous post from a very brave and loving mama.