Monday, 30 July 2012

Choices

I don't feel I can ignore the recent media spotlight on Down's Syndrome.  It's in the papers, on TV, on my twitter feed, article comments, health websites.  The list goes on.    

Maybe I should be pleased that awareness is being raised, debates are happening and Down's Syndrome is being talked about and reaching people who may never have thought about it or understood it before. Personally, I'm not.  I feel that the media is intruding into my world and the picture it is painting to everyone is more 2 year old with a crayon than the 'Matisse' I see everyday.  Most of the articles or comments are ill-informed and are certainly not based upon fact, experience or understanding.  And Samantha Brick's comment about parents 'Disney-fying' DS was just so wrong on so many levels.  But I'm not giving that woman any more of my blog space.

The reason behind the attention appears to be two-fold.  The debate over women who have had IVF terminating pregnancies screened positive for DS and also the proposed improvements in pre-natal screening that essentially give women the opportunity to find out if their unborn child has Down's Syndrome earlier and less invasively.   

Screening available now is the Nuchal Translucency test and the triple blood test.  Results of these plus risk factors such as mothers age are put into a computer and a number is generated.  A number greater than 1:150 (as of October 2011) is deemed to be 'high risk'.  Women with a high risk result are then offered an amniocentesis.  The amnio provides an almost 100% certain result as to whether the baby has a chromosomal abnormality or not but is invasive and carries a miscarriage risk.  In hearing other mothers stories, an amnio result positive for DS is generally given in the same breath as the health professional asking about termination.  Some mothers choose to have the amnio so, either way, they are prepared for when the baby is born.  Some have the amnio because they don't want a child with an abnormality and they go on to terminate.  

Since having Ella, friends have spoken to me about this.  I have friends who have said that knowing Ella and what we have been through has shown them that Down's Syndrome is not to be feared.  Yes, it's tough but they feel better informed in making a decision about having a child with DS should it ever happen to them.  On the flip side I also have friends who have gone all out to ensure that their unborn babies don't have DS.  Knowing me age 28 have Ella made them seek out all the testing they could.

I am fine with both viewpoints, everybody is different and situations are different.  We are lucky enough to live in a society where we have access to screening tests and have the ability to choose what happens based on the results of those tests.  Whether that child has been naturally conceived or through IVF is another debate. There is also the reality that embryos can be screened for chromosomal abnormalities before they are even implanted.  So many ethical issues!

The worry that some have voiced is that with the improvements in pre-natal genetic testing we are slowly entering a world where no babies with DS will be born.  I disagree a little with this and go back to my point about having the right to choose.  Until they make the testing compulsory there will always be women (like me) who decline pre-natal testing. There will also always be parents who have an amnio and continue pregnancies knowing their baby will have DS.   

Out of Ella's peers - the 9 or 10 other families we know well - we were the only post-natal diagnosis (Some parents had amnio's and knew they were having a baby with Down's  Syndrome others knew they were high risk and declined the amnio). That says a lot.

For some people, having that knowledge won't change the outcome. No matter what those tests tell you, there will be a baby.  Maybe a perfect, healthy baby. Maybe a baby with DS.  A baby that will grow up happy and healthy.  A baby who is autistic, gets cancer, has an accident...  Nobody knows what will happen to their children and while ante-natal screening programmes have their place, they aren't for everyone.  They can't screen for everything  nor can they predict the future.

What does worry me is that if the numbers of babies born with DS decreases,  where does that leave funding, support and services for babies, children and adults with DS?  The whole debate over pre-natal screening opens many moral and ethical debates - too many to go into here.  It just seems a shame to screen for DS, not because it is the worst thing imaginable that can happen to someone, but because we can.  

All I know is that we have Ella, we love her to bits and we wouldn't change her for anything. Life is good, we are happy.  I still have bad days and worry that people will always see the Down's Syndrome before Ella and judge her based upon their misjudged pre-conceptions.  Life with Ella hasn't been easy and this isn't quite how I imagined motherhood to be.  

Despite all that, I will always be happy with the choices I made... 













If you would like to read more, here is the best article recently written about Down's Syndrome:

Are we stumbling towards a society with no children being born with down syndrome?






3 comments:

  1. Well said. I declined screening for my son. At 36 weeks pregnant a heart defect was suspected. The midwife suggested an amnio but the cardiac consultant overruled and said "this type of heart defect doesn't occur with Downs". How wrong he was. Finlay continues to do everything different than predicted and it makes him him!

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  2. Hi Amy, great blog, and very good points. There will always be people who decline screening as you say, and those that carry on regardless of the result. We declined screening too, my whole pregnancy was low risk, nothing was suspected at all. It was only 6 hours after he was born, whilst he was in special care because of the infection he contracted during labour, that the doctors woke me up to tell me his 'heart was failing.' This was pretty much the most terrifying sentence that has ever been spoken to me, and when I asked what was wrong with him I was informed there and then they believed he had down's syndrome. My husband wasn't with me, nor was Harry, and there was certainly no softly softly approach. That's why I would want to be prepared in future, but everybody has a a different story and their own reasons hey. Love the pics, Ella is GORGEOUS x

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    1. Thank you Olivia. There is still a massive need for the education of health professionals to be taught how to break news to new parents. Your experience sounds awful and we had a pretty rough first few days when we should have been enjoying our new baby. Although we were told together that they suspected she had Down's Syndrome they had taken Ella out of the room to feed her while they did it. I might be able to write about it one day just not ready yet. The NHS has been fantastic in all other respects, heart surgery etc etc but those first few days we will never get back, attitudes need changing, long way to go. And for the record, your Harry is very gorgeous too!
      Take care
      Amy xxx

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