Sean Caden Hynes

Our Darling Seán

Sarah and Stephen Hynes's baby son, Seán, was diagnosed with Edwards Syndrome also known as Trisomy 18 at her twenty week scan

Devastating news

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 because this was not the news we were expecting to hear.

The following day we returned to meet with the medical team to discuss what was going to happen. We decided to have a special test called an amniocentesis done - this test would confirm the diagnosis in a few days and then the doctors could 'fix' our baby, or at least that's what we thought. Two days passed, we were living an absolute nightmare, not knowing what was wrong with our precious little bundle. But 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 love you to the moon and back

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We had never heard of Edwards Syndrome before

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 didn't 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 and 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.

With my mam and Dad...

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Our Little Fighter

But Seán was a little fighter and made it all the way until the end. He was due August 11th and arrived on August 9th, breathing on his own and alive! We got our wish, which was to meet our little boy alive. He got to meet his family and knew nothing but love for those two wonderful days.

Our family was waiting patiently in the hospital for Sean's arrival for two days! I was induced but refused to take any of the medications to speed up the labour, as I was afraid it would affect Sean's heart. Because of that, it took him quite a while to make his grand entrance. As soon as he was born they were all allowed in to see him and hold him and shower him with love and kisses.

He had lots of visitors over the two days. We just held him in our arms the whole time, well mostly his daddy Stephen did... he just couldn't bear to put him down! That's the best memory I have of Seàn - the memory of him snuggled safely into his daddy's arms all warm and cosy. Stephen was his protector, he just couldn't get enough of him or do enough for him. His big sisters, Leah and Jodi, were amazed at him... they must have taken hundreds of photos of him.

We played his song constantly throughout the pregnancy, "Beautiful boy" by John Lennon, whom he was named after - it was on repeat while we were in the hospital too. I swear to God he recognised the song, it seemed to soothe and calm him each time he heard it. It's a very special song to our family now and each time we hear it we think of Seàn.

So we wrapped him in love for those two days, two wonderful days we will never forget. However, on August 11th at 2pm, Seán grew his angel wings. I will never forget that day as long as I live. 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. We wondered 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 whomever takes the time to read it. For those going through a similar situation, know that you are not alone and there is always someone there to talk to. I made a promise to my angel that his memory will live on forever and that he will always be talked about everyday. Losing 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

 Little Darling Seán

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Getting a cuddle from my beautiful sisters...

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Sarah being interviewed on Newstalk

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TRISOMY 18 or EDWARD's SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage before birth, but, quite contrary to recent reporting, studies have found that the average duration of survival for children who lived until birth with Trisomy 18 was 14.5 days; with 39% of babies surviving for more than a month, while 8.4% survived for more than a year.

Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111

Links Medline Plus Irish Support Network International Trisomy Support Seáns FaceBook Memorial Page

Some of the ‘black & white’ images on this page have been the work of an NILMDTS photographer, Thank you!