Sean's Story, by his Mama

By Sarah Hynes

I would like to share my story of my precious little boy Seán Caden Hynes who was born with something called Trisomy 18, otherwise known as Edwards Syndrome. This is the second most common syndrome in Ireland after Trisomy 21 - also known as Down Syndrome and the third most common syndrome is Trisomy 13 - also known Patau's Syndrome. 

A "Trisomy" means that the baby has an extra chromosome in some or all of the body's cells. In the case of Trisomy 18, the baby has three copies of chromosome 18. This causes many of the baby's organs to develop in an abnormal way. There are three types of Trisomy 18: Full Trisomy 18: (This is what Seán had). The extra chromosome is in every cell in the baby's body. This is by far the most common type of Trisomy 18. Partial Trisomy 18:The child has only part of an extra chromosome 18. That extra part may be attached to another chromosome in the egg or sperm (called a translocation). This type of Trisomy 18 is very rare. Mosaic Trisomy 18: The extra chromosome 18 is only in some of the baby's cells. This form of Trisomy 18 is also rare. 

Our story began on the 31st of March 2014, the day of our 20 week scan. We were attending the Rotunda Hospital in Dublin and were so excited to see our little bundle on the big screen. The nurse called us in to the scan room and began. We could see him wriggling around and kicking away and thought everything was fine until.....she stopped the scan, turned to us and said, 'we have a problem here, something doesn't look right with your baby and I think we need a second opinion'. She explained to us that there seemed to be some problems with our baby's heart and brain, and asked us to come back in the following day to see the doctor. That's literally all I remember from that day, I got up off the bed in tears and ran out of the hospital as fast as I could, we were in complete shock, this was not the news we were expecting to hear.

The following day we returned to meet with the medical team and discuss what was going to happen, we decided to have a special test called an amniocentesis done, that would confirm the diagnosis in a few days and then the doctors could 'fix' our baby, or at least that's what we thought. Having this test is the only regret I have from this whole experience. Looking back now I dont think we were given the chance to think about it properly, I felt very rushed in to it and also pushed in to having it done. 

Two days passed, we were living an absolute nightmare, not knowing what was wrong with our precious little bundle, and then we got the phone call that would change our lives forever. First we were told were having a boy, then the diagnosis - Trisomy 18, Edwards Syndrome.... and it was fatal. We had never heard of Edwards Syndrome before this. I have never felt pain like it in my life, to hear words like that, how do you even begin to take in the news that your precious little baby was sick, that there was no cure and that he was going to die???? I didnt want to listen, I just couldn't take it in, how could this have happened?? Was it something I did wrong, was it my fault?? Turns out it was nothing to do with myself or my husband, it was a 'fluke of nature'! 

Regardless of the diagnosis we knew that we wanted to give Seán the best possible chance of life, we did everything in our power to keep him safe and warm in there until he decided it was time to make an appearance. Doctors explained to us the risks of continuing on with the pregnancy, that we may never get to meet Seán alive. Unfortunately many babies with Trisomy 18 pass away in the womb early on in the pregnancy, there was also a risk of stillbirth, but we just wanted to give him the best possible chance to meet his family, his big sisters, aunts, uncles, cousins and grandparents. 

The next four months were probably the hardest days of my life, not knowing what was going to happen, trying to continue on as normal, it was torture. But Seán was a little fighter and made it all the way till the end, he was due August 11th and arrived on August 9th, breathing on his own and alive! We got our wish, we got to meet our little boy alive, he got to meet his family, and knew nothing but love for those 2 wonderful days. 

On August 11th at 2pm Seán grew his angel wings. I will never forget that day as long as Iive, a piece of me died that day with him, a piece I will never get back until the day we meet again. Our world just fell apart. Life can be so cruel, so unfair, why us, what did we ever do to deserve this??? But Seán has made us the proudest parents in the world, he has made us better people and for that we are forever grateful. 

I wanted to share this with whoever takes the time to read it, for anyone going through a similar situation, know that you are not alone and there is always someone there to talk. I made a promise to my angel that his memory will live on forever and that he will always be talked about everyday. Loosing Seán has been the hardest thing we have ever dealt with. Unfortunately this condition is more common than you would think, but a lot of people know nothing about it. So I have decided to share my story in the hope that it helps some other parent of a Trisomy child. 

Thanks for reading and remembering our beautiful boy Seán Caden Hynes, born @ 7.58pm, 09/08/14, weighing 5lbs 3ozs. 

Sleep tight little angel, love you to the moon and back xxxx