Tuesday, August 28, 2007

Pops Reading System

Just a quickie - Alfie's Nan and Grandad have brought me an article about some really brilliant books, a reading system designed for children who have Down syndrome. I don't know if they're available in Canada or the US yet but maybe our local library can get a copy (I've got an in there as Mat's a librarian).
Alfie and Noah are doing great - Alfie can pull himself up to standing!!! Wow! (He's only done it over the side of the bath so far - a bit dangerous - I've got to watch him like a hawk now), And he's started waving. It's just too cute. I'll try and get him to do it on video so I can post it.

Wednesday, August 08, 2007

I've written an article about prenatal testing

Giving accurate, unbiaised, information should be at the heart of prenatal testing
by Alice Evans

Twelve weeks into pregnancy most women will now be offered a scan to see how their baby is doing. A chance to actually see the little bundle of trouble that’s already keeping you up and night, sending you running to the bathroom every morning, and rushing your body with previously unknown levels of hormones. Most women look forward to this scan as an opportunity to reassure themselves that they aren’t imagining it, they really are pregnant, and everything is alright.

But, what happens if it isn’t? Finding out that there might be something ‘wrong’ with your baby is a dreadful, heart stopping, experience, and one that the majority of women are ill-prepared for. Some do not even realise exactly what their fetus is being tested for, and when they are told that there is a chance that their baby has a disability, it’s true to say that the bottom can drop out of their world.

To make matters worse, many medical practitioners do not have the counselling skills needed to help women through this fraught and confusing time. Many complicated decisions need to be made and questions answered - and not always questions that have straightforward answers...’Should I have a test that gives me a conclusive answer and risk miscarriage?’...’How could this ‘anomoly’ affect my babies health?’... ‘How could it affect my child’s life?’... ‘How would it affect my life?’.
With only medical staff to answer these questions - normally staff who have no actual experience of living with a child who has the condition, it is not surprising that 90% of potential parents who are given the diagnosis of Down syndrome choose the most direct and seemingly straightforward option of termination.

The social stigma that surrounds Down syndrome and other genetic conditions, combined with the minefield of the abortion debate, can make this a tricky area for doctors. They don’t want to force parents to have babies that might have health problems in the future, and feel the need to highlight the potential risks to protect themselves from legal retribution. But this medicalized approach can mean that potential parents are pressurized - sometimes overtly, into making the decision to terminate, and leaves other parents feeling guilty, foolish and alone for choosing to continue with a pregnancy. It also means that a realistic picture of life with a child who has Down syndrome is rarely given.

Michael and Felecia Outhouse, new parents who were given a positive result for fetal anomoly last year, found that the information they were given was woefully inadequate:
“ Upon receiving a prenatal diagnosis of Down syndrome I found that health care professionals volunteered little information about raising a child with Ds, yet took great efforts to inform us that termination was not something to feel guilty about. When asked to make this decision you are highly unstable and it is a time when you need the true facts. I shudder to think what my life might be like had we not undertaken our own research and had relied on the information given by the professionals. He is such a lovely, healthy baby and we love him so much! ”

My personal experience as a parent to a child who has Down syndrome, is that nothing could have prepared me for the joys, pride, and laughter of living with my son. I am grateful to the doctors who, when he was born, told me to focus on the possibilities rather than disabilities - their support was crucial at this extremely emotional time. Having seen the stress that many of my friends had been through when undergoing prenatal testing, my husband and I had decided that we would commit to our pregnancies regardless and would therefore forego the nuchal fold translucency tests offered to us. Other women, however, strongly feel the need to know. Action needs to be taken to ensure that this process is not needlessly stressful, and to support, counsel, and prepare potential parents, whether or not they receive a positive diagnosis.

In the UK and USA steps are being taken to ensure that the giving of a diagnosis of Down syndrome, or other genetic condition or ‘anomoly’, is carried out in a clear and value neutral way that supports choices, and does not direct parents to a specific outcome. Systems are being set up to ensure that doctors’ personal viewpoints do not overshadow the giving of a diagnosis. In order to provide parents with a real and informed choice, the same guidelines and legal requirements should be introduced in Canada.

The Nova Scotia Down Syndrome Society have set up a petition calling for a Prenatal and Postnatal Diagnosed Condition Awareness Act.
Such an Act could lead to training for medical staff including training in counselling skills, the use of neutral language, and awareness of negative personal prejudices. Guidelines could be created that are informed by medical practitioners, alongside parents who have chosen to continue a pregnancy, parents who have chosen termination, and adults who have the relevant genetic conditions.

If created, this Act could also lead to awareness campaigns about what pre-natal tests are for, what choices are available to women, and what life with Down syndrome and other genetic conditions means for children, adults and families - including information about the support and resources available. Research into the best ways of communicating complicated information could also be utilised. If women are given clear, unbiaised information, before they have diagnostic tests, and preferably even before they become pregnant, they will be more able to make informed choices that are not rushed or clouded by a fear of the unknown, or ill-informed prejudice.

To find out more about this Act, and to join the campaign to have it introduced in Canada, please visit :
or visit www.novascotiadownsyndromesociety.com

Thursday, August 02, 2007

Antenatal Results and Choices

My mum told me about this interesting program on the subject of antenatal screening on Woman's Hour on BBC Radio 4. They are introducing new guidance on the screening process in the UK and this program explores the issues in quite an interesting way - it's from a medical standpoint, not a specifically pro-Down syndrome standpoint, but I think it's interesting to see that way that the subject is handled by the mainstream media in Britain.

In the UK there is a charity set up to help people make decisions when they are given a pre-birth diagnosis of an 'abnormality': ARC - Antenatal Results and Choices. It's a non-judgemental system that helps people understand what their choices are, and links them to the support groups that can give them more information. That's in the best case scenario - I, personally, doubt that it's what usually happens.
On the program they are also talking about giving more information about these choices before people get pregnant - with case studies and information available on the internet and through the health service. This makes a lot of sense - trying to think about Down syndrome for the first time when you are being told that you are 'high risk' and you have loads of hormones floating about your system isn't the best time to take in complicated information.

Ps. Please excuse the photo - as this is such a dry post, I thought I'd choose a picture that would spice it up a bit - this is me the day before Alfie was born. ooooh.