Personal Stories

Judy Green, Blackpool, UK
judy.green@blueyonder.co.uk
Daughter - Katie Born 1992

Hello, my name is Judy,

When I was pregnant with Katie I had to go into hospital
as I started inlabour at 29 weeks, where they stopped
the labour with medication and did a
scan which showed
the baby had a problem. They didn't tell me this for
nearly 10 weeks and I was told that as the baby wasn't
ready to come, the safest place was in me.

I had fluid removed 3 times a week by a needle through
into the womb. This was monitored on a scan tv because
Katie had a duodenal atresia (2 blockages in her bowel).
I had shared a hospital ward with another woman who gave
birth to triplets and I had been the same size!

 

Because of this I had to stay 10 weeks in hospital to stop me going into
labour again. I was given a side ward, which helped but the days were so long and boring,

In 1992, I gave birth to Katie, our lovely 11 year-old daughter. I wasn't told about the fact that Katie had mds until the day before she was born. Before Katie was born a lady called Margaret (specialist health visitor to special needs children) from the hospital came to talk to me about "Down Syndrome". I couldn't cope with all she was telling me - it was my baby - the baby I wanted. I told her to leave me alone. I felt as though I wasn't feeling anything. I cried for my child as well as me. When she was born by caesarean, they rushed Katie away. I had to see her. I did briefly and she looked like any baby crying because she was hungry. She had tubes because they were going to operate to remove the blockage. Katie had an operation to remove it the following day. Without it, she would have certainly died and she now has a scar the length of her tummy. Katie was in St Mary's Hospital, Manchester where the doctors did a blood test which confirmed she had mds - 50%-downs 50% normal. "What's this ? Something else wrong ?", I thought. What's mds !!!!! No one could really explain with so little heard of it and it being so rare.

When Katie was about 3 months old, Katie's dad and I parted (arguments) andI was left to bring her up on my own. He didn't have any contact with her at all after that. It wasn't easy not knowing much about mds. The family were around but they didn't understand. I desperately needed to talk to someone who child was the same as mine. Fortunately, I have since re-married and Bill has adopted Katie. We searched the web to find someone somewhere that could help us with our child and we found Bree in 1999 who had set up a mosaic down syndrome site in the USA. She had a daughter and we were thrilled to find other parents around the world too. They understood how we felt. We didn't feel alone anymore but we still felt the health and education professionals didn't really understand how Katie would develop. She seems to do the same in some things as our other children, only a little slower.

During Katie's early years, the only help given was from the local Special Needs Centre and from a Portage helper who came to the house once a week to help Katie with motor skills.

When Katie reached nursery age, we decided to let Katie go to private nursery as well as state nursery. The private nursery gave Katie the chance to show her how to communicate with other children as well as giving her a start in early years education. Katie loved going and learnt a lot about herself and others, and was treated the same as all the other children.

Katie stayed there until a week before she started mainstream school, where she has a one-to-one Special Support Assistant for 17 hours a week. Katie's workload covers all the areas of the national curriculum and she is currently on level 11 reading and is above average at reading. Her downfall however is numeracy but does ok in Literacy. She just needs help with some comprehension. Katie's doing well in school in Art (making her own slippers at the moment) and likes music, science and geography. She loves to sit at the computer and type, to anyone who will chat to her. She has got lots of friends too at school.

Katie is a happy child, very loving but can be very stubborn and defiant. - She seems very clever and has an answer for everything ! She asks questions all the time, and loves music (favourite bands are Sugababes, Westlife, Michael Jackson, Robbie Williams and many more). She loves fashion clothes and has all the up to date clothes - a right little diva !

Katie loves to go to MacDonalds and loves chinese food - a pleasure to take out. She has lovely manners too. She likes ten-pin bowling and talking toher mds friends on the webcam. We wouldn't change her at all despite her being a horror at times :). She brings so much love to all who meet her. Feel free to get in touch, I'd love to hear from you.I still feel the way you do. You learn to live with it but remember - it's a child first who just happens to have mds. It can be hard work at times but which child isn't :)