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Kieran our first child was born on 27th April 1995. He had full T18 and lived for 8 days.
I always had a feeling something wasn’t right with my baby.  I never had any testing just scans because it would not have changed our decision to have the baby, so there was no point. All scans were ‘normal’ I was told. However around 30 weeks I was admitted with excess fluid (this was the reason I wasn’t feeling much movement I was assured). I was scanned and again nothing abnormal showed up. Around 34 weeks they noticed Kieran’s heartbeat seemed slower than normal, I was monitored for a day in hospital, again nothing to be concerned about I was told. I had a detailed scan at 38 weeks and was told heart normal, kidneys normal, brain normal, everything as it should be and my baby was around 7lb at that stage. Kieran was born 2 weeks later with full T18 and weighed 4lb 5oz.
There are no words to describe the dark hole we were plunged into and the shock and heartache our whole family felt. Kieran was our first born child and the first grandchild for both sides of our family.
All the local hospital told us was ‘It’s not down’s syndrome’ which we took as a positive! We were transferred very quickly into the Queen Mothers Hospital in Glasgow and within 24 hours it was confirmed Kieran had T18 Edwards Syndrome.  We lived there for the next 7 days. The staff were fantastic. We were blessed with 8 days with Kieran for which I will always be eternally grateful.
Even now, after all these years when I think about it I have to push all the negative thoughts and feelings from my mind and concentrate on the precious 8 days I had with Kieran.
We have been blessed with 3 more children Lisa, Jason and Erin who all know about their precious baby brother Kieran.
We were very fortunate to be in touch with SOFT while we were still in the hospital and the support we received then and after Kieran died was invaluable. I’m very proud to be a SOFT trustee and feel honoured that through the years I have been able to support and help others in such a desperate time of need. I have made many special friends through this.
Having Kieran changed my path in life and made me who I am today. There are no words to describe the pain of losing a child but given the chance, I would relive those 8 days again in a heartbeat.
Liz and Frank x

Created: 20/03/2019 14:44

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