Hello there, if
you are reading this then you or someone you know has just given birth
to a beautiful baby boy or girl……Congratulations. Your emotions may
however be all over the place as you may have been told that he/she has
My husband and I
found ourselves in this situation in April 2004 with the birth of our
second daughter Lucy. Lucy's diagnosis and medical problems came as a
total shock (following a normal pregnancy) and the subsequent weeks and
months were a real roller-
The reason for writing this leaflet is that we would like to offer that same support/contact to others (if and when they need it). We have put together some of the local contacts and information, that took us quite a while to find. It may all be too much to take on board now, so perhaps file this until you are ready. We are a family of four and Lucy has a sister, who is 2 years older than her, who she adores. At 1 year Lucy was achieving lots, she was sitting, combat crawling and pulling up to stand. She knew what she wanted and did not mind telling us about it. She is a little ray of sunshine and a cheeky pickle; well most of the time.
My outlook was not always this positive and I do not mind admitting that it took me quite a while to accept what had happened to Lucy and to us. Initially all I could see was our baby who had Down Syndrome, and that she was not the baby I /we had expected. Now I look lovingly at Lucy, with her unique character and see her first and the Down syndrome as an after thought, I love her just the way she is!
I had so many of these thoughts flying around in my head but they slowly started to disappear as it became clear that Lucy had more immediate problems. Lucy had a bowel obstruction and we were rushed to Gt Ormond St Hospital in London where she had corrective surgery. It became clear also that Lucy had a heart defect and we are now currently waiting for probable surgery in a year or two.
Lucy has really thrived. She has basically achieved all the normal things a child should do, at her age. We have made a decision to push Lucy as much as possible as early intervention has been shown to benefit children with Down Syndrome immensely. I cannot say what the future will hold and many of my early thoughts may still come true. I concentrate on the here and now and enjoy every minute I have with my little girl.
KWDSG is affiliated to the Down Syndrome Association.
Registered Charity 1119018