Samuel's Story

Diagnosis: HLHS

By Maria

When we got pregnant with Samuel we had tried to conceive for years and had also added two cycles of IVF to the mix of building our family. To finally be pregnant was a victory and we couldn't wait to meet our baby. A true miracle it was.

My pregnancy was pretty uneventful, I had just a little nausea, heartburn and general tiredness but otherwise I was feeling good and healthy. From week twelve I started more and more to believe this was real and my fears of something going wrong decreased significantly.

But I never in a million years thought it would come to what we discovered at the anatomy scan at 19 weeks. It was found that our baby boy suffered from a congenital heart defect which is incompatible with life: Hypoplastic Left Heart Syndrome.

We were going from the joy of finding out the gender to a deep emotional crisis in the matter of hours. It shook our world. After a lengthy appointment with experts we had the full diagnosis clear and learned just how severe this heart defect is.

We didn't say much on the way home but looking back I can see that we knew deep inside early on what we needed to do. Another week went by and we had a follow up appointment with our doctor. After a lot of thought, research, many tears, soul-searching and talks at length with doctors, friends and family we decided to let him go.

We learned the hard way just how powerful Love can be; we strongly believe that it was our way of showing our baby boy the ultimate Love and protection. It was the most heart-wrenching and difficult decision to make but when it was taken there was a shift in me. The acute stress and anxiety was gone, the grieving had begun and I cried more peaceful tears.

Samuel was born still on the 16th of February 2012. Three weeks later his memorial Service was held. It was in a way comforting and helpful to be able to let go of his physical body and acknowledge his short life with us.

To end a much wanted pregnancy is the worst thing I have had to go through so far in my life. It's nothing we wanted but at the same time – that was the option we could live with and come to peace with as time goes by. We can only do what feels best in our hearts with the knowledge we have. And this was our choice, a truly heartbreaking one.

Mothers tell their stories...

I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in life.

~Mom of an Angel

Everything was going great. As already having two "normal" pregnancies under my belt, I felt confident. I knew there was always that chance of hearing bad news but I said "no, not me, not our baby."

We felt that if our daughter had been in a car accident and was on life support with the same internal injuries, we would not keep her on life support and let her suffer. This child deserved the same dignity."

~ A grieving mom

I initially thought I would "be brave" and continue my pregnancy. But I came to realize that ultimately it wasn't about how strong I could be, how deeply I wanted this baby or what important lessons he could teach me. It was about what he would experience in his short life. Given his diagnosis, he would have known only suffering. As his mother, I couldn't allow that to happen.

~ A mother at peace

It was our ignorance for believing that all pregnancies led to a healthy baby. It was my arrogance for believing that since I had the best medical care, took prenatal vitamins even before and during my pregnancy, never took drugs, never smoked cigarettes and drank about half a glass of wine a year, that our baby would be safe.

~A bereaved mother

A mother will stop at nothing, including her own hurt, both mentally and physically, to protect her child.

~Brokenhearted Mother