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Down's syndrome - help and advice

Wednesday 29 August 2012, 15:20

Keri Davies Keri Davies Web Producer, The Archers

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Terry Molloy and Rachel Atkins (Mike and Vicky Tucker)

If you've been affected by Mike and Vicky's storyline, you may find these organisations helpful

The Down's Syndrome Association provides advice on best practice for supporting people with Down's syndrome at every stage of life. They have a comprehensive range of resources and targeted support services for people with Down's syndrome, their families, carers and the professionals who work with them.
Helpline: 020 8614 5100 Mon - Fri 10am - 4pm.
Email: info@downs-syndrome.org.uk

bibic is a national charity offering practical help to families caring for children with conditions like autism, cerebral palsy, Down's syndrome, developmental delay, brain injury, and specific learning difficulties like ADHD, dyslexia and dyspraxia. They specialise in understanding the causes of challenging behaviour and can even offer support if your child has not been diagnosed with a condition.
Telephone: 01278 684060
Email: info@bibic.org.uk

Contact a Family is a UK-wide charity providing support, advice and information to families with disabled children, no matter what their disability or health condition. They can also put families in contact with others whose child has the same condition.
Helpline: 0808 808 3555.

Antenatal Results and Choices is a national charity providing specialised non-directive information and support to parents throughout antenatal testing and when a problem is suspected or diagnosed in their unborn baby. They offer help for as long as is needed whatever decision is made about the future of the pregnancy.Their services include a national helpline, a volunteer peer telephone support network, moderated online support forums and a range of supportive publications.
Helpline: 0845 077 2290 or 020 7713 7486 from a mobile (weekdays from 10am to 5.30pm)
Email: info@arc-uk.org

NCT (formerly the National Childbirth Trust) is a leading parenting charity. Each year the charity supports hundreds of thousands of parents through a life-changing experience, offering expert information and trusted practical and emotional support through the website, the nationwide network of 300 local branches, free helplines, antenatal and postnatal classes, breastfeeding counselling and peer support schemes.
Telephone: 0300 330 0770
Helplines: Pregnancy & Birth 0300 330 0772; Breastfeeding 0300 330 0771; Postnatal 0300 330 0773; Shared Experiences 0300 330 0774

Keri Davies is an Archers (and Ambridge Extra) scriptwriter and web producer

Picture shows Terry Molloy and Rachel Atkins (Mike and Vicky Tucker)

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Comments

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    Comment number 1.

    The Wellcome Foundation is currently funding a project that explores the ethical dilemmas surrounding Downs Syndrome pregnancies. The project allows visitors to the website to log their advice to a fictional character facing exactly the situation faced by Vicky. The project can be found at www.tellsarah.info

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    Comment number 2.

    http://www.zen123082.zen.co.uk/uk_downs_syndrome/index.html#IndDown
    this is a very useful source where parents can message each other by email

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    Comment number 3.

    I was under the impression that the amniocentesis test, while over 99% accurate for Downs' is not 100% accurate. So surely the doctor shouldn't be saying it's definite?

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    Comment number 4.

    My nephew is 47 years old with downs. He cannot speak as he has an enlarged tongue,his mental ability is that of a 6year old with behaviour problems. My brother and sister in law are in their 70's and exhausted. My nephew refuses to go to the dentist,opticians,hearing tests - he is very strong and has injured both parents before. They love him he is their son but they have had very little life of their own. I know not all downs are the same but Vicky and Mike are not of an age where they can bring him up long term at some time some one else may have take over, is that fair? to either the child come adult or the family.

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    Comment number 5.

    My son has Downs and so did my brother. My brother, like the man mentioned above developed some severe behaviour problems, around his teenage years. He was unable to continue living at home and lived in a 'sub-normality hospital' for about twenty years until we reached more enlightened times and was found a place in a group home with staff that helped him to enjoy life and gain access to the community. It is not realistic or helpful to the person with Downs to assume that they should live at home with as parents as they go into their 70s. There are alternatives out there that will give a greater social life and independence when children reach adulthood. Also Vicky and Mike will meet a huge local 'family' of other parents with children who have Downs and derive pleasure and support from that. The view above makes many negative assumptions. Vicky will enjoy her child and it will keep her interested and invigorated by opening up a whole new world. Mike will come round when he meets the baby.

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    Comment number 6.

    Thank you NotoriLaroc, I am finding this storyline so very difficult as we went through the same thing just a few months ago. Having previously been of very strong mind that I would and could not ever terminate a much wanted and already loved baby, it was ultimately for the very reason you have described that we took the heart breaking decision not to carry on. We tore ourselves in two and not a day goes by that I don't think "what if..." but I know for us and our family it was the right decision. There are many strong opinions on Twitter, possibly with no personal experience to back up these opinions...my experience is that you really do not know what you would do in Mike and Vicky's position unless you have the ultimate misfortune to be there. There is no right or wrong decision, just what on balance is right for your family......and so much heart break. Maybe we have too many choices.....

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    Comment number 7.

    Thank you for your comments. It's very moving to hear from people for whom this is not drama, but real life.

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    Comment number 8.

    I have been following this storyline and it has brought back some very difficult feelings for me. Like Raquersb, I have gone through this, having taken the decision not to continue with the pregrancy. (It's interesting the words we choose to try to normalise this experience). I don't as a rule take part in these blogs, but on this occasion, and as I have practically no other outlet for this very painful experience, I wanted to share it with others who may have gone through the same. We already had a boy who less than two years previously had been diagnosed with autism. Not knowing how it would manifest itself later in him, the prospect of having another child with learning difficulties was too much for me to bear. I reacted in a kneejerk sort of way, when I reflect on it now (over six years on) and would not consider the possibility of continuing with the pregnancy. I live with the choice every day of my life now and nothing can ease the very complex emotions I feel about it. My husband at the time was in agreement but it also haunts him. I found myself wishing I had miscarried as that would have taken the responsibility away from me. And when I occasionally mention to people that I have lost a baby in the past, I feel like a fraud. I find the not being able to talk about it very hard. Initially, after this, I completely ruled out ever trying for another child, but I was persuaded by the midwife to keep the door open. We did have another child (at 43). My very special little girl, who is now 5. R was right when she suggested that perhaps we have too many choices. Science has run away ahead of what we can cope with on a emotional/moral lever. I will continue to mourn my middle baby in private.

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    Comment number 9.

    I cannot understand why The Archers has not mentioned the paralympics particularly with discussion about Mike & Vicky's possibility of having a disabled child. Though there is no right or wrong decision in the situation it seems rediculous when half of England is revelling in the feats of disabled sports people that no-one (eg Brenda) has put forward the possibility that nowadays nothing is banned for the disabled. There is no way of saying that Vicky & Mike's child could not grow up to be a prospective paralympic champion.

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    Comment number 10.

    Petra - thank you for sharing your very moving experience.

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    Comment number 11.

    Well, I'm all with Vicky. True, I wasn't as advanced in years as she is, but at age 42, I found I was pregnant, after having relinquished a decade of unsuccessful fertility treatments many years prior. The gift of this surprise pregnancy so delighted us, that I refused to do any conventional check-ups whatsoever. My husband was in agreement. From a religious standpoint, we would not have aborted anyway, so the lack of invasive checks kept us in a state of blissful ignorance. I enjoyed a healthy and easy preganacy, exercising, eating the right foods, doing anything I could to ensure the welfare of the foetus and bring it to a safe birth. An hour after my daughter was delivered by natural birth, the "devastating" news that she most likely had Down's Syndrome was announced in the most insensitive of ways. I didn't know then much about Down's Syndrome - only what I had read vaguely in magazines here or there (a 1960's view)): about these people looking "mongoloid", having a "sweet sunny nature", being mentally retarded, being shunted from society and not living that long. I determined there and then to love this child and do everything in my power to enable her to live a happy, healthy, meaningful life, in as normal circumstances as possible. Now at age 12, she reads and writes in 2 languages, can do Olympic (not para-) quality cartwheels and soltas, and lightens up the mood of everyone with whom she comes into contact. Yes, there have been some extremely difficult challenges with her, yes, we worry about the future (my husband and I now in our 50s). Unlike Mike and Vicky, we did not and do not have family that jumped in to help us. We've had to fight for inclusion and paid through the nose for many therapies and interventions, but we've also had years of joy from this child and she has taught us some precious and invaluable priorities and we aim to enable her to be as independent and capable as possible (nevertheless, always requiring a caring watchful eye to make sure that she is not exploited or abused). Mike and Vicky should be introduced to a range of children and adults with Down's Syndrome. Mike has the sort of prejudices and back-hand information that anyone who is shell-shocked into a scenario such as this, is likely to have... so Roy and Brenda should be doing the work of making him an informed father. With more information and less prejudice at his finger-tips, Mike will feel more comfortable talking it through with Vicky. They should get in touch with Sue Buckley (and the DownsEd organisation), who is a huge advocate for people with Down Syndrome and realize that some of the sad descriptions painted above is not necessarily the prognosis of a baby born in 2013. So much has been done to better the future and adult life of a person with Down Syndrome.

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    Comment number 12.

    My son has downs syndrome and found last nights episode very distressing, lustening to Brian's glass half empty words. There will be a substantial number of people with downs listening to this storyline , and understanding the words perfectly well. This is an opportunity to educate the audience in disability equality and the social model. I hope Vicky is going to take Mike along to a disabiluty equality course like Planning Positive Futures with Parents for Inclusion, or even get them in to train the village! It would be a way of redressing the balance for audience members like my son.

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    Comment number 13.

    Down's Syndrome is not what it was many years ago, shut away from view.
    Today, with early intervention and masses of love, our children are flourishing and becoming valuable members of their communities.
    Inclusion is a two-way process and others learn greatly from them.
    We provide a supportive network over at www.downssideup.com where you will find a powerful, inspirational blog, beautiful photos, tips, advice and ways to get involved to make you smile.
    Our daughter Natty is a model with Down's Syndrome, proving that all things are, indeed, possible.
    Gently changing perceptions of Down's Syndrome from within the hearts of the nation.

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    Comment number 14.

    Thank you all three for your comments. I'll pass them on to my colleagues.

 

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