Families have often been affected by these conditions without knowing it because up to half of all pregnancies are miscarried, sometimes before a woman realises she is pregnant.
One in five confirmed pregnancies end naturally within three months, and prenatal diagnosis increasingly offers parents choices later in a pregnancy.
Many of these losses are caused by a chromosome abnormality.
When a baby is live born with one of these conditions, it is estimated about one in ten infants will live beyond twelve months, but in many circumstances accurate predictions are not possible.
This page gives an insight into the lives of some of our SOFT UK children and is a tribute to those who care for them.
Saskia
trisomy 18 (Edwards’ syndrome)
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Saskia will celebrate her 18th birthday in February, and is now the oldest surviving child in the UK with full trisomy 18, something I dreamed of at birth when doctors told us to have her christened and say goodbye. She was born with three holes in the heart and elevated pulmonary pressure but her heart has more or less mended itself and we are looking forward to hopefully being discharged by the cardiac clinic next year. |
Saskia lives at home and is totally dependent, having no mobility, no speech and the inability to eat orally, necessitating feed and fluid in-take through a gastrostomy tube. She also has a permanent in-dwelling urethral catheter as her bladder function is impaired. She is, however, in very good health. Her worst problem is her scoliosis which, although deteriorating has not yet had any impact on her lung function. Rod surgery may have to be considered but is not something I am particularly keen on. Saskia attends school and has done since she was two. She loves school , particularly all the boys and the male teachers, and loves to go to Shed @The Park (outreach project from Chickenshed theatre) one night a week. Saskia loves music, sensory lights, magazines and boys, especially boy bands. Looking at herself in the mirror is another favourite pastime and going to the cinema so she can sing over the actors! She hates being cold or ignored. Saskia is a well travelled young lady, and when she has problems we access the expertise in America as she is the oldest surviving child in the UK. In the States families have surviving children in their 20s and we had the privilege of knowing a young lady from Utah who was 36 when she passed away! Saskia’s dream would be to meet McFLy! |
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John
20.05.88 - 23.10.07
A life worth living Some SOFT children
Katie
trisomy 13 (Patau’s syndrome)
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Our Katie is now 14 years old! Well.... who would have believed it? We came home with Katie, our little scrap of a baby, at six weeks old. We were foster parents and had been asked if we would foster Katie. I admit we were a little scared because we could see our beautiful bundle was sick, but we knew that when we were asked to foster her. |
| I had to check with our four boys to see how they felt, but they could not refuse. I went to the hospital a few times to get used to administering the oxygen, feeding her etc. She was so small because she had full trisomy 13 and I don't think we knew what a full time job it was going to be. Having said that, Katie has given us so much pleasure. The hospital visits are endless and regular admittance, can be tiring, but Katie is a very determined young lady and she has a way with her that everyone loves. Katie goes to a wonderful school that can meet her needs until she finishes her education. She has a beautiful smile, is happy in the water, enjoys roundabouts, and loves horses and riding on them. Katie can walk with help although it will not be forever as her legs are fusing, and she is deaf and partially sighted. We have just had a bad spell in hospital but she is much better. She has recently gone away for a week on her first holiday alone, an adventure week especially for children like her. I don't know how she will get on without her television as she is a real addict when it comes to television time! Katie now lives in a wonderful unit, a bungalow with three other handicapped teenagers. It was very difficult to let her go but she is quite heavy now and we are no longer spring chickens! Having said that she is very happy and we see her at least once or twice a week to take her out, so we have become independent visitors but still her mum and dad. |
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SOFT UK has published two helpful booklets |
Your Unborn Baby and Your Baby can be read on our website, text only. Click on a booklet and choose a section from the index. |
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 Explores the issues faced after a prenatal diagnosis of trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), what is involved when a termination is chosen and how to plan when the pregnancy continues. |
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 Gives information about the birth of a child with trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), and the early months of life, with sections on siblings, bereavement and a new pregnancy. |
SOFT UK also distributes the SOFT USA Caring For a Child booklet. Although SOFT UK booklets are free to families who have been affected by one of these conditions, professionals and students are asked for a donation of £5 per information pack to cover print/postage costs.