Daddy’s story on losing our little baby

Edwards Syndrome

I just wanted to post something from a fathers perspective. Our little man Idrys showed anomalies on the 12 week scan back in early January so the doctors advised the CVS. We went ahead and then faced the agonising 3 day wait. The results came back positive for Trisomy 18 and we were devastated. Truly one of those things you think can never happen to you. The hospital were trying to arrange a medical termination for the same week, but we wanted to live with the news and do our own research to find out everything we could. We quickly discovered that there were no good options when it comes to Edwards Syndrome. We thought it the least we could do was to get a second opinion, we saw a private doctor a week after the initial results. We saw a scan of our baby where he pointed out excess fluid under the skin in most places on his body, as well as an abnormal heart. The doctor was very frank with us, and as harsh as it was, I think we needed to be told straight. He basically said that the outlook for our baby was ‘dreadful’. With Hydrops, cystic hygroma, abnormal heart and trisomy 18 (all are related) we really felt that we had all the facts we needed and the only heartbreaking decision was how to go about it.
We read a lot on surgical vs medical and came to the conclusion that at 16 weeks surgical was easier for my wife but far less dignified for our little man. My wife, being exceptionally brave took the option of medical, putting baby first and feeling like it was the least we could do for him.
She took the first medication last Monday and then we went in on last Wednesday 3rd Feb. Coincidentally my wife started having contractions around an hour before we went in and they gradually became more frequent and within the hours he had delivered baby Idrys. It was a very surreal and heartbreaking experience and despite all of his health problems he looked perfect to us. After a couple of hours recovery for my wife, they asked if we would like to see him again and we really wanted to. They brought him back for us, but in a plastic container. At the time, we were still so in shock, we just stared at him, mesmerised, having a rare glimpse at something many never get to see, a baby at only 16 weeks already a perfectly formed (despite being very poorly) human being.
My only regret is that we never touched him, in hindsight I blame the hospital for the way they presented him. Next to his placenta, there was still blood in the container, it’s not a situation where you feel like picking baby up, although we did take some pictures. Having read a few other posts where babies were presented to their parents, I feel our hospital should of presented him to us in a much more humane way so we could enjoy our only moments with him more. It was all so clinical, they even referred to him as ‘product’. We are definitely filing a complaint about this.
Two days later, on Friday 5th Feb 2016 we had a private burial for Idrys which was very hard to do, but also the perfect way to say goodbye. We already have two boys aged 6 & 7 and they also had the chance to say goodbye to their brother. I actually got to place Idrys in his final resting place and I do find some small comfort in knowing I was the last person to hold him.

If anyone has any questions, please ask. We would love to be able to help anyone else going through such a traumatic experience. Thanks for reading.


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