SOFT UK has trained volunteers who provide support to families via email, text and telephone. All our volunteers have had direct family experience of Trisomy. When we receive your enquiry, we will pass it on to the person who is best placed to support you - this may be the volunteer closest to you, or the one with knowledge or experience of your situation. We're only an email or a phone call away.
Hi my name is Aileen mc kenna. I became a volunteer for soft uk just recently. 24 years ago I give birth to my third little girl, Shannon Rose. What should have been a happy time for us turned to sadness when just after I give birth, Shannon was diagnosed with Edwards syndrome. Nobody in the hospital could tell us very much as this was the first baby born with trisomy 18 in craigavon hospital. Shannon lived only 5 1/2 weeks before she grew her angel wings. I still knew very little about this syndrome. My only wish is that at that time I could have had the chance to speak to someone who had gone through this or at least knew a little bit about this.
Through soft I can let people know that if they need to talk to someone who has gone through this they can contact me or any soft volunteer, and that somebody is always at the other end of a phone line if the need to talk. When you feel that you're the only one in the whole word to have gone through this, that somebody else knows just how you feel. Thank you soft uk for giving me the chance now to help in a way I never had years ago.
I am Amanda and one of the telephone and email support helpers at SOFT. I first became involved with SOFT in 1995 when we got the news when I was 22 weeks pregnant with our second son Joshua that he had trisomy 13.
We chose to carry on with the pregnancy, and during this difficult time the information and support from SOFT was very helpful.
Joshua was born in October 1995 and died in Feb 1996 - a very special four months for us as a family. The following year we had healthy twin boys, Samuel and Jacob.
I now work as a teaching assistant in a local boys secondary school and with three teenage sons of my own I am kept pretty busy! I have been a rep for SOFT for a number of years, answering telephone calls and more recently emails from parents needing support. Although it is now a number of years ago that I was caring for a child with a trisomy myself, I believe I can still empathise with newer parents and hope I am able to be of some help to them, Mandy.
Having made the decision to carry on with one pregnancy, and terminate a pregnancy with severe abnormalities I felt that I could understand how difficult it was to come to each decision. I now help SOFT UK and ARC when parents want to talk to someone after a prenatal diagnosis.
In 2006 we were told that our unborn baby was showing signs of trisomy 18. After testing, trisomy 18 was confirmed in the 24th week of my pregnancy. My husband and I chose to carry on the pregnancy and on 26th November our daughter Charlotte was born.
Charlotte was with us for a wonderful 6 months and 3 days before she passed away on 29th May 2007. Later that year we decided to try for another baby and sadly our little girl Jackie had severe brain abnormalities. Again we were in a position where we had to make a choice whether to carry on the pregnancy or terminate. We decided that we would terminate.
After returning to study and being comfortable with my grief, I decided that my experiences of carrying on and terminating a pregnancy could be of use to other parents who are struggling to make a decision. I talked to SOFT UK and with their help I completed a distance learning pack, and passed the final practical assessment with ARC.
Best wishes Laura
Hi my name is Liz and I have been a member of SOFT since 1995. My first baby, Kieran was born in 1995 with T18 (Edwards' Syndrome). Kieran lived for 8 days. I had contact while still in the hospital when I needed it most and it was amazing to speak to someone who knew exactly how I was feeling.
Although a very short time we have many precious photos, videos and memories that will stay with us forever. I had always had a ‘feeling’ that there was something wrong with my baby, but because it was my first baby doctors felt I was being over anxious.
I had excess fluid and Kieran had a slower heartbeat than normal, I never felt the kind of movements other mums would talk about and I was small looking. I had a detailed scan at 37 weeks and still nothing was detected. I was told my baby was around 7.5 pounds and everything looked normal. Kieran was born weighing 4lb 5 oz and had everything wrong with him. I am glad that I did not know about T18 during my pregnancy, it wouldn’t have changed my decision, I would still have continued with my pregnancy, Kieran would still have been born but it would have been even more worrying.
The support I received from SOFT when Kieran was born invaluable. I became the Scottish Rep in 2000 because I wanted to be there to help give information and support when it is needed most.
My daughter Angharad was diagnosed with Trisomy 18 (Edwards Syndrome) shortly after birth and died at 12 days. During this difficult time SOFT UK was a great support to our family and have been since, so I wanted to be of some help to other families touched by Trisomy.