#AWorldWithoutDownSyndrome is a hashtag that is making it way through the Down Syndrome community at the moment.
This is due to the documentary that is airing on BBC Two tonight at 9pm. The host of the documentary is Sally Phillips (The blonde friend of “Bridget Jones Diary” or “Smack the Pony” is what I remember her from).
In the documentary, Sally, who’s eldest son Olly has down syndrome, will be investigating the new NIPT that is offered to women during their pregnancies.
The Non-Invasive Prenatal Test (NIPT) was brought out on the NHS at the beginning of this year. It gives a more accurate result for chromosome abnormalities such as Down Syndrome.
Now on this subject, I sit on the fence. I believe that this test can be extremely helpful to parents who want to know if their child has down syndrome during their pregnancy. Instead of going through the shock of finding out at birth like I did.
However, the worrying side to this test is the fact that in the health care profession having a child with down syndrome is seen as a terrible thing. Women who find out their unborn babies have down syndrome are not given the full information of what down syndrome actually is.
I know that when LM was born I was scared witless and didn’t know where to turn and the doctors wouldn’t/couldn’t answer all my questions. They didn’t have the information to tell me and instead sent me home with a packet of leaflets and left me to figure it out myself.
While in the hospital the nursing staff were very quick to let know all the things that she probably wouldn’t do and didn’t really help dispel my fears. There was only one nurse who was truly honest with me. She explained everything that would happen next and where I could go for support. (I sometimes wonder if she had a child or family member with Down Syndrome, but I never asked)
I have said many of times though that I am glad I never found out that LM had down syndrome during my pregnancy because I know how scared I was in the early days and how little support/information I got, that I would have probably made a terrible choice.
This is because a lot of health care professionals will use scare mongering and tell the worse case, they use words like “Suffer” and “poor quality of life” to pressure word into terminations. Then there is the horrid fact that in this country if your child is found to have down syndrome or any other disability, you can be offered a termination up to 40 weeks.
Does this look like LM is suffering or have a poor quality of life?
Now don’t get me wrong I am very pro-choice and I believe that it is a woman’s right to choose. However, I think that these women should be given all the information or a balanced point of view before they have to make this life changing decision.
Because honestly having a child with down syndrome is the same as having a child without down syndrome. You will change nappies, have cuddles and want to pull your hair out in frustration. You will lay awake at night worrying about what the future holds, wipe away tears when they fall and hurt themselves and you will count your lucky stars that this amazing child is yours.
Yes you have more hospital appointments and you will need to go for regular hearing test and physiotherapy appointments but what is to say that you wouldn’t be doing those things with a child who doesn’t have an extra chromosome?
I am thankful every day that I never had to go through this decision process and that i got to bring my daughter into this world before I was told she had down syndrome, because even though it was a shock and I was scared. I also got the chance to meet my beautiful daughter, I got the chance to fall in love with her and be her mother. She got the chance to change my world view and make me realise that Down syndrome isn’t anything to be scared about.
So I hope you watch the documentary tonight or catch it on BBC iplayer and see if you want to live in a world without Down Syndrome. Honestly, I know I don’t!
x Nikki x