Sharing experiences is often a great way to help 'new parents' of a child with Down's syndrome. Below some of our members have shared their experience / story. If you would like to share your story to help others, please email firstname.lastname@example.org
Everyone has a story and I am sure mine is no different from anyone else’s. My name is Jo-anne and I am happily married to Brian and have been for 19 years. We have two lovely children, Millie who is 13 and Blythe who is soon to be 11 years old. Blythe has Down syndrome.
I fell pregnant with Blythe when I was 34. All was going well. My 12 week scan stated that I had a 1:2000 chance of having a baby with DS. Things changed slightly at my 20 week scan. I was told all matter of fact that they found markers for DS. There they told me to go away and forget about the findings as I had nothing to worry about. I was 34; my risk was slight so I was not offered any further tests.
I think the last 20 weeks of my pregnancy were the longest weeks of my life. How could anyone forget that? I think I spoke to every professional going and all stated the same, "Don't Worry".
Blythe was born on the 4th February 1999. She was adorable. I can remember Brian saying, “hasn’t she got short arms and legs and her eyes are slanted!” I told him not to be silly as she looked the spitting image of Millie when she was born.
We made our phone calls to our family and friends. Brian left and I had my special time with Blythe alone, where we started to get to know each other. It was at that point she opened her eyes and looked at me. I saw something in her eyes that didn’t ring true. I kept saying to myself she hasn’t got DS they told me I would be fine, they sent me away saying “Don’t Worry”.
The next few hours there was a lot of comings and goings in my room. Midwives making sure I was comfortable and Doctors carrying out routine checks on Blythe.I can recall one Doctor examining Blythe and he named every characteristic associated with DS. Brush field spots in her eyes, palmer crease on her palm and saddle toe. He then stated imperforate anus. At no time did he address me; it was as if I was invisible. I had to ask him for an explanation. He informed me that they were all part of her, and nothing further.
A while later I was sitting on my bed with Blythe lying next to me. Five doctors entered my room and surrounded my bed. The head doctor stated that she was sorry but Blythe had Down syndrome and that she didn’t have an anus and that she need to go straight into intensive care. I can then only remember them all standing around talking to me but I could not hear anything. I thought this can’t be happening to me. They told me not to worry!! Blythe was taken from me. I then had an hour trying to get hold of Brian but was unable.
He returned to the hospital with Millie who was 2 and half. They both came rushing into the room to find me a heap on the bed and no Blythe. Our lives had been totally turned upside down.
We were then rushed in and ambulance to a specialist hospital. No one knew what to say. Hospital staff said in passing, they do go to mainstream school now a day, did you know they can out live their parents! The questions that went round in our heads: Why us, what had we ever done wrong? I would have to give up work. Nothing would be the same.
Friends didn’t know how to react, they didn’t even send us congratulation cards. They all appeared scared to even contact us. It was only after talking to us the cards started to arrive. And why shouldn’t they have? as we had a beautiful little girl who had a few issues.
Well nothing is the same, I didn’t give up work and if I knew then what I know now I wouldn’t have had a care in the world.
Having Blythe in our lives has enriched us as a family. We have met and made some very special friends on long the way through having her.
We are still in and out of hospital for her bowel conditions. That is just part of our lives now. We cope because Blythe copes. I have got to say she is the most amazing little girl and we have been really blessed to have her.