Thursday, 21 February 2013

Down Syndrome Screening and You!

Contrary to popular belief, not all parents of children who have Down Syndrome are Anti Testing during pregnancy. Although some are, others see things in a different way but we seem to not shout quite as loud as the others and I can't work out why?
 
I for one am not anti testing
 
I am pro choice.

Your body, Your baby, Your family... YOUR DECISION!
 
The sad thing about this is that you hear a lot of parents of children with Down Syndrome saying how wrong it is to get tested during pregnancy and not enough of the other side of the argument. Mainly because they wouldn't ever change their children for the world and can't see why anybody wouldn't want a child who has downs, which I get as I wouldn't change Kyd either. 
BUT not enough of us are talking about, or even admitting, that with any other pregnancy after the DS one, we would want to know if that baby has or hasn't got Down Syndrome whilst pregnant, to prepare ourselves for what's to come because it is, in fact, bloody hard. I certainly wanted to know.

From my understanding and my own recent experience, this made myself and many other people I know feel awkward about the decisions they make during pregnancy. Every time I hear people shouting about being against testing, I get this guilty feeling deep down, like I was the spawn of the devil and the worst mum in the world for wanting to know and going through with it. 

So I'm shouting out loud for 'Your Choice', as every individual is different and can deal with different things in different ways... Lets face it if we were all the same it would be very dull and a little too easy.

I get sick to death of reading about people saying:
'I didn't get tested because it doesn't matter to us whether they have or haven't got Downs'.
Don't get me wrong that is lovely and I respect your views but whilst saying this so loudly and matter of fact, you are putting people in an awkward position, especially if they have had the tests or are waiting for them.
 
Some people just want to know, they want to prepare themselves for what may lay ahead and they want to get to grips with their new lives, before it hits them square on. They may not care either way if the baby has a disability or not but at a hard enough time as it is with a newborn, dealing with a diagnosis too turns your world upside down, knowing beforehand can prevent that and help with bonding and avoiding severe post natal depression. Finding out after, as a huge surprise, makes everything you've hoped and dreamed for your child, whilst you've grown him or her inside you for 9 months, shatter in pieces before your eyes. Whether or not they grow up to be happy and healthy and all you dreamed of or not, at that moment, that isnt't what is happening in your head. The words 'we have discovered a few complications' can destroy any parent... No matter how strong or understanding they are in normal life.... It's hard.

So is finding out really all that bad?... And is it really fair to say 'I think testing should be banned' so strongly and in front of so many and take away that choice for them. Making out like people who want to know about their babies health, are the devil and don't care about their unborn child, makes the people saying that wrong in my eyes, not them. To me it felt like bullying, like I wasn't allowed an opinion, and like the forcing of others opinions on people that haven't asked for it, in most cases.
 
The people saying it may not mean it like that, although they may well do, but to a pregnant woman and a father to be, should they really be putting that amount of guilt and pressure on them to conform to THEIR expectations of what is right and wrong? Or should they just say 'what will be will be' and leave it to them to decide.

Offering your opinion is one thing, and I respect that, but making someone feel guilty is in a different league and there is a fine line.
 
If a friend of mine asked me, whilst pregnant, what they should do.... I'd say:
'in my opinion, for me, it is best to know and prepare but for you it may not matter, as you may deal with things differently. in the long run it is all about you and your family. No matter what you do, it wouldn't offend me, or Kyd, as your choice is all that matters'.
My friends know this. My friends realise that Kyd is remarkably healthy compared to some and yet is still hard work, and like with all children, everyone is different, even those with Downs. 

My saying:
Babies are like a box of chocolates, you never know what you're gonna get... although it is quite nice to have that little lleaflet thingy to let you know what is what sometimes.

It is hard work having a baby, let alone one with complications. I didn't know about diagnosis until he was 24hrs old and I'm not afraid to say it destroyed me at the time, so i know first hand what a slap in the face it really was to hear the words 'we've run some tests and...', it is heart breaking. Preparation may have helped me greatly when it came to acceptance and depression and although to the outside world I dealt with it amazingly... Inside I was a failure. 

At the time of having Kyd I wasn't eligible for testing, when i say eligible it wasnt really offered to mums under 35 unless family history said otherwise, family history wasn't known in my case so wasn't suspected, anyway, due to age this option was taken away from me. I was 16, I was told by my midwife 'its ok you don't need this test, you're too young to worry about that'. Which later she regretted, and I'm pretty sure was a lesson learnt for all of us. 

The thing is you're never to young, and especially if its Translocational Down Syndrome which is a genetic form of the disability. Genetics don't really care about your age, genetics are just there waiting to pop up and cause problems willy nilly and often go unnoticed until too late. Screening could help this. 

I know screening comes with its own risks and that is a huge decision in itself, the 'is it worth the risk?' guilt is immense, believe me i know, as ive recently gone through it with Rocky. In some cases it isn't advisable, if medically you've been told to avoid the testing, you should listen to them, but if not, the decision is yours. 

What I'm trying to say is, that only YOU know your own mind, body and soul and only YOU can make that decision. You must discuss it as parents and as a family and take on board all that is said by all parties....

BUT don't feel the guilt of being judged... 
 NEVER, feel the guilt of being judged... 

Because at the end of the day, nobody will judge you more than yourself especially if you spend the rest of your lives thinking 'what if I had/hadn't'. It needs to be your decision, not your friend's, mother's, sister's, brother's, neighbour's or even doctor's... It is yours.

 Don't forget that.

 


If this hits home and you are pregnant or trying for a baby, Good luck with your decision, and if you need any help or advice, although there is plenty out there, just get in contact with me I will do my best to help you through it, from parent to parent.


6 comments:

  1. What a brilliant post, I don't see how anyone could argue against what you've said here. I'm not sure that I would do the test, but that is my choice and I have absolutely no issue with anyone who chooses to do the test, in the same way that I wouldn't ever find out the gender of the baby in advance, but I have never felt it a bad thing that others do find out. It has to be about what suits the parents.

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  2. Thank You. I have been umming and ahhhing whether to post it or not but I thought personal stories were lacking in this subject so thought 'what the hell'. x

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  3. I just stumbled across this post today and wanted to say how refreshing it was to read. I found out after the birth of my son that he had Ds and it was a devastating blow to me. I wish I had had testing so that I had time to prepare and learn more about Ds. The whole prenatal testing thing for me comes down to this...It is simply no one elses business what choice others make for their family. To each his own.
    Excellent post!

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  4. This is a wonderful post and I agree, preparation can surely only be a good thing? But as you say, everyone is different.

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  5. I couldn't agree more. I can't imagine how hard it must be to hear that your baby has any kind of health problem or disability but I'd much rather know earlier and have the chance to ask questions, do some research and make plans before the birth so that when they arrive you can just enjoy your new baby.

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