Screening for Down's syndrome

This is a highly emotive subject that is might well benefit from further debate.  However, from a midwife's perspective, I feel I would not be serving the needs of the women I support if I allowed my own ethical beliefs and values to impinge on my professional life.

I attend a gym and enjoy the company of a young woman with Down's Syndrome, she is a delight, far more so than some of us grumpy women who go to the gym out of duty.  However, in my work as a midwife I have also seen parents truly heartbroken by their choices.  I suspect their grief will never leave them and it is not for me for me to do anything other than give my compassion and support.  Ethical quandaries are for quiet and personal reflection but to bring them to the fore in a professional sense is to let down the women we purport to serve.

Moira

As of the 1st November 2008 the cut-offs are being changed in England to 1:200 for second trimester screening & 1:150 for first trimester. This will bring down the number of invasive procedures performed.

Anyone wanting further info should visist the NSC website, and/or speak to their local screening co-ordinators.

I often wonder do we give families enough information to make an informed choice? I have observed colleagues (who are pro-testing) counsel families & most families opt to test. I have observed colleagues (who have no testing preferences) counsel families either decline testing or  worryingly still accept the triple test, mostly accepting I feel out of a willingness to comply.

Having been on the receiving end personally of a high risk triple test result, I I encourage families to think very carefully about what a DS child would mean to them. I neither encourage or discourage testing, rather I ask them to consider what they would do about a high risk result. Would they undergo invasive testing?

I also ask them to consider that even if in receipt of a high risk triple test result, or definite diagnosis via CVS/amnio - that they still are not required to act on results.

Equally I point out that even if their personal risk returns at, for arguements sake, 1:4200 that they may still be that 1.

It is a difficult one. I notice BBC news has an interesting page this week that 'depite testing more DS babies are born now than before testing was widely available'. This supports  that as a society we are still surprised by others decisions to accept a special needs child into our families. Thankfully a comments page gave wide & varied views from readers who had first had experience of either continuing with their pregnancy & raising a DS child, chosing to terminate their pregnancy & the sadness it brought, or the loss of an otherwise healthy pregnancy as a result of invasive procedures.

We are in a different place to where we were when testing first came about. Women are starting their families later, their lifestyles are vastly changed, indeed society itself is slowly questioning, debating & changing it's viewpoints. Regardless of alterations screening parameters these outside factors will also have their impact.

Overall the screening programme has been successful. All pregnant women are now offered screening where previously it was only available for women who could pay privately.

In a health trust that has approximately 2000 births a year we had approximately 5 cases of downs syndrome born each year to women under 35. We performed between 120 - 140 invasive procedures each year for women over 35. This has now reduced to approximately 50 each year for our pregnant population as a whole because women know if their risks are increased of not.

Women should understand that the Screening programme is their choice and for some women it may be stressful and not an option that they choose. The biggest challenge for the health professional is to give unbiased  and correct information in order to enable those women to make their own free choice.

The Screening programme has continued to improve and will continue to do so the challenge for midwives and Obstetricians is to keep up to date with changes and to give unbiased correct information to women in plain English to enable them to make an informed choice.

Women and their partners should not feel that they have to or are obliged to have screening of any kind. I suggest to women who I am booking that they could think about how they feel about caring for a Downs Child and discuss this issue with partners, before making a decision to screen. Woman should obviously be informed that the initial scan/ combined screening is not diagnostic and it is offered to give them choice. I do not believe that choice should be removed, but it is the way the women are informed that is not always adequate. Some women are not properly counselled before going ahead with Downs screening and this needs to be improved.

Pregnant woman need to make their own decisions, but based on impartial clear advise and information.

I give them different points of view, i.e. to have no Downs screening with the view that the parents wish to accept the child what ever the outcome. I discuss how many Downs children live in my discussion at booking choice of screening, I firstly make sure they are aware that it is first an option to opt out of screening and I always endeavour to explain.