To terminate or not?

Well I'm guessing this could be the post that evokes the most responses so far, because wherever people sit on this question, they tend to feel very strongly and passionately about it and I've found that it can evoke very strong one-sided responses even from some of the most open-minded people - but here goes anyway.

Yesterday in the Guardian there was an article entitled To us, she was Emily about a couple who chose termination after tests showed their baby had Down's syndrome and how that  decision gradually tore their family apart.  It was a very honest piece from a viewpoint not often represented and for me it reinforced some of the concerns that I have over this issue.

In my work with Down's Heart Group I have spoken to many families facing this difficult decision and as a representative of the charity I am expected to be factual and non-judgemental and not to allow my own personal feelings to enter into the conversation.  I hope that after all these years I have perfected this, so I am not going to behave any differently here on my blog.   I'm not going to point out all the positive sides to having someone with Down's Syndrome in your life as reading through some of my previous posts should provide that information for anyone that needs it.  What I am going to do is discuss some of my concerns over the way some families are arriving at the decision to terminate.

First and foremost I believe that this is a very personal decision and one that should be made based on individual circumstances.  People have different moral and religious beliefs, come from different cultural backgrounds, have differing family set-ups and varying degrees of support available to them, so naturally the decisions they make will vary, so I find it somewhat concerning that such a high percentage all choose the same option, which makes me wonder on what they are basing that decision?

This needs to be a FULLY INFORMED decision, taking into account all the factors I mentioned before and realistic unbiased information about Down's Syndrome.  This information needs to be made readily available and to be based on pure fact with no implied expectation of the route the family will choose to take and it should include help in meeting families who have a child with Down's Syndrome, support group contacts  and also offer alternative choices such as adoption.

Sadly, in my experience this is all too often not the case.  Termination is the expected outcome; the possible medical problems of the baby are given high precedence; adoption is never mentioned even when a family is obviously in turmoil over the decision; focus is given to the child's lack of future potential even though as with any baby there is no way of knowing what that will be; the option of "throw this one away and have another go" is readily offered.  

Generally, termination seems to be offered as an easy way out and that worries me greatly.  It worries me because I know of families who have gone down that route, steered along by the medical experts and then been left to pick up the pieces when they slater tart questioning whether they made the right choice.  Families who have been unable to conceive again and ended up childless and one family who terminated, refused testing in the next pregnancy as they didn't want to face all the pressure again and went on to have their second child with Down's Syndrome.  They were devastated, not by that baby having Down's Syndrome but by guilt over what they had done before.

I'm certain that many parents who opt for abortion are left with very raw emotions from their experience (yes some of you may feel that they deserve to, but I would ask did they really know and understand that that might happen?) and I wonder what the long term effect on their mental health may be?  

I am sure that not all of them walk away unscathed and never look back.  I can't count how many times the family of a young child has told me that suddenly there are loads of people with Down's Syndrome in their area, but of course really those people were always there it's just that now these families are far more aware and tuned into the characteristics so they notice them.   I suspect that for many of those parents who have a termination it is much the same and that everywhere they go they see people with Down's Syndrome who are a constant reminder of the choice they made and I guess that's not always an easy thing to live with.

In October 2009 the British Medical Journal published a reseach paper Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register.  One of its conclusions is "These future changes need to be closely monitored to ensure that appropriate resources are available both for the potentially increasing numbers of therapeutic abortions and also for the babies who will still be born with Down’s syndrome."  Whilst we are worrying about the cost of future medical and educational requirements, I'd like to suggest that some research be done on the psychological costs for the families who later regret following the advice of the experts at a time when they were too vulnerable to demand adequate information to make a fully informed choice for the future.

Families given a diagnosis of Down’s Syndrome, whether before or after the baby’s birth are incredibly vulnerable, the onus should be on ALL medical professionals to ensure that they receive up to date, accurate, realistic and unbiased information so that they are in a position to make INFORMED CHOICES.  Thankfully some medics are excellent at this, but I fear that they are still outnumbered by the others.