Wednesday, 5 September 2012

I’m not a blogger. Nor am I a writer.  I am simply a mother of a child with Down’s Syndrome and someone who has some limited personal, and professional, experience of the NHS.  I am also someone who has somewhat of an issue with the current debate around screening.

With a medical hat on I can see that yes, any advancement in medicine is always a positive thing on some level, and giving mothers to be the chance to screen without risking miscarriage is, I suppose, as the article above states, ‘exciting’ and a ‘major advance’.  True.  But speak to any parent of a child with Down’s Syndrome and this sort of screening is being deemed to be the beginning of the end for children with Down’s Syndrome.  Which is most definitely NOT a major advance.  There are so many myths around D/S.  People believe a child with special needs would be a drain on their family, or take their attention away from their ‘normal’ children.  They believe it takes a special type of person to be able to raise a child with special needs.  Well that’s just bull.  My little boy does nothing but bring me complete utter joy in every imaginable way.  I feel pride every second of the day, so much so sometimes I feel I could burst.  I’m not a special type of person... I’m just a mum.

So you would assume from my above comments that therefore I must be against all these advances in screening.  Wrong.  I am not against screening.  I am against screening and termination being mentioned in the same breath of every piece of NHS literature parents to be can get their hands on.  When I was pregnant with my boy I declined the nuchal fold screen.  As, in my mind, I wouldn’t terminate, so why bother?  

What I didn’t know was that around 50% of children with D/S have significant cardiac issues (my son fell into this category.) They can also be more susceptible to infection and other health problems.  Had we known what we know now, we would have requested a more detailed cardiac scan to determine the health of his heart, as the poor little man had a real trauma making his way to the outside world.  Perhaps I would have requested a caesarean had I known.  I imagine I wouldn’t have been left to go 10 days past my due date either, meaning the little man was so desperate for his first poo he decided to do it inside me during labour!  This meant he spent about 10 hours swimming around in his own... well, you get the picture.  He contracted a nasty infection unsurprisingly in that time, and with a hole in his heart he was weak and couldn’t fight this infection as easily as an otherwise healthy child might have.  He therefore spent the first 2 weeks of his life in special care.  Meaning my husband and I came home from hospital without our baby boy.

So here’s what I’m thinking... we can’t stop medicine advancing, and neither should we.  As parents we can only hope medicine continues to evolve at this incredible rate providing a healthier future for our children.  But can we change the way screening is viewed?  The word “screening” itself implies eradicating.  Parents of children with D/S are afraid we are “screening out” these incredible babies.  

So why not change the whole approach?  Let’s call it health scans.  Let’s offer parents the chance to have a complete health scan of their unborn child to, as this article states at the very bottom, “better manage their pregnancy.”  Instead of clinicians routinely discussing the option of termination after a positive diagnosis of D/S, why can’t they offer a detailed cardiac scan, and discuss different options around the child’s birth?  Why can’t it be about the parents and the clinicians being better prepared for the child coming into this world?  Forewarned is forearmed.
Of course every parent still has the right to decide whether they want to continue with any pregnancy, for whatever the reason.  But please NHS, let’s start offering parents to be some real constructive advice around having a child with special needs.  It isn’t any more draining or challenging than having any other child.  It’s just parenting, pure and simple, and it’s driven by love. 


  1. Perfectly put. Brilliant. I agree entirely x

  2. You say you don't write or blog - you should! That was really well written and very well said
    Amy (Mum to Ella bean who also has a little extra)

  3. A beautiful piece of writing and an excellent suggestion. More information, leading to more (hopefully, positive) choices can only be a good thing. A real example of some outdated views that need moving on. Really interesting also to have your input professionally as well as emotively. And I agree, you should blog!

  4. Well said, Olivia. And my very best wishes to you.

    - Nigel Searle (your grandfather's cousin)

  5. Such a lovely letter. I don't really know much about Downs Syndrome but I want to read more (I'm following this blog: where she refers to your letter.