Statement by Sarah - Seán's mam

Hi everyone, my name is Sarah Hynes and I am here with my husband Stephen to tell you about my baby boy Seán who was diagnosed with Trisomy 18, otherwise known as Edwards Syndrome at 21 weeks in to my pregnancy.

We were given this devastating news back in April of this year at a routine scan. Basically the nurse turned to us during this scan and told us there were some problems with our baby's development and to come back the next day to see a specialist.

As you can imagine we were in absolute shock and we were terrified at what the future was going to bring.

The following day we met with the consultant who basically told us that our baby had what looked like one of two things, either Downs syndrome or Edwards Syndrome and that it would be best to have an amnio done to confirm what was wrong.

Looking back on it now I totally regret having that test done, but I was in such shock and so upset at the time, I wasn't really taking in what the doctor was saying to me, I thought I would have the test done and then they would be able to 'fix' our precious little baby.

But I couldn't be more wrong. Once they had Seán's diagnosis on paper, I felt his life was written off, and he was abandoned by the medical professionals.

Two days later we got that phonecall that would change our lives forever, first we were told we were having a little boy, then the diagnosis, Edwards Syndrome.......and it was 'fatal'. I had no idea what Edwards syndrome even was up until this point, I never even knew it existed!

I will never forget that day as long as I live, to be told your precious little baby was sick, there was no cure and he was going to die. The words 'INCOMPATIBLE WITH LIFE' were used over and over again, and each time we heard this it just made us more and more upset.

We were given two options, continue on with the pregnancy and hope for the best or have a termination. We were given no information, no hope, just told go home, have a think about things and let us know your decision.

A couple of days passed and we contacted the hospital to let them know we were continuing on with the pregnancy, regardless of Seán's diagnosis we knew we had to give him the best possible chance of life.

I just want to say that im not here today to pass judgement on anybody for the decisions they made. We chose life for our Son, but I can completely understand why others would feel pushed to terminate in these horrendous circumstances and then probably live on to regret that decision. There was no focusing on the positives, no hope was given, it was very black and white, our baby was going to die.

I was very lucky to have an amazing husband and family around me to support me through what was the worst time of my life, but I do understand that there are a lot of women out there who don't have that, and may feel pressured in to thinking that a termination would be for the best. And terms like 'INCOMPATIBLE WITH LIFE' and a lack of information and support for parents going through something like this needs to change.

In my opinion, using terms like this wipes out any glimmer of hope parents may have. And its wrong.

Because Seán WAS compatible with life, he was such a little fighter and he battled on until the very end. He was born August 9th and lived for two wonderful days that we will never forget.

We got our wish, we got to meet our little boy alive and he got to meet his mammy & daddy, big sisters, aunts, uncles, cousins and grandparents and he knew nothing but love for those two amazing days. We held him in our arms the whole time he was with us and we are so proud of him, so proud to call him our Son. He was COMPATIBLE WITH LIFE & COMPATIBLE WITH LOVE and he will live on forever in our hearts.


Sarah Hynes, mam to Seán Caden Hynes