Reader's Story - by Lizzie Chilton


The Journey of My little Miracle



Waiting anxiously on the 1st April 2011 yes ‘April Fools day’! and I finally got that call from the Fertility Nurse ‘congratulations Mrs Chilton your beta hcg blood test is postive’ its shows a high reading of 500bhcg a very high pregnancy rate!!! OMG did I cry that day, it had finally worked after 10 years of desparately wanting a baby I WAS PREGNANT! I Cried and cried, tears of joy, my little frozen embryo had worked!!! The little embryo was transferred on a red nose day! So I knew my little baby would be a bundle of fun!  As the pregnancy went on I was so sick!!! Vomiting at anything, smells, tastes of foods you name it!  Kept saying to myself this little one so wants to be here, its taking everything out of me!  12 week scan came, we were so excited but nervous as well, all seemed good on the scan, given pictures and I was telling the world!  That after noon, received a phonecall from the screening nurse, ‘Elizabeth your combined blood test result has come back extremely high risk at 1:2’ for abnormalities, we want you to come and discuss this with the consultant tomorrow!!! Felt sick! I just thought my baby has an abnormality!  That evening was so upset, kept thinking my god what is growing inside of me! Having IVF you feel you deserve a perfect child! It should be perfect! Then would think no theyve got it wrong its all ok and just a stupid inaccurate blood test!  Went to see the consultant, I was in tears in his office, 2 male doctors and my hubby sat there, I was surrounded by 3 males! Had to laugh when I think back when I burst out in tears the look on the mens faces, all running around looking for tissues for me! We went onto have to CVS diagnostic test, this was a massive dilemma! I wanted to know what was happening, somehow I wanted to feel safe again, Im a person who needs to know.  I was so scared the baby wouldn’t be compatable with life, always remember my husband saying he wouldn’t be bothered if the baby had downs syndrome, I used to think that before I was pregnant, but now faced with it, I so wasn’t sure!  
My experiences so far with the medical profession were good.  On the 3rd June 2011 sick again with fear, the phone rang it was the consultant, I knew straight away the CVS was positive for something, why would the consultant ring me! And not a nurse!  ‘Elizabeth Im giving you the news you didn’t want to hear’ your baby has ‘downs syndrome’ shaking trying to take it all in, ‘ill be ok I said I need to see my husband’ still cant really remember the conversation.  After putting the phone down I ran outside i couldn’t breathe, I walked around the garden saying ‘no’ ‘no’ why me why me, I was hysterical!   My husband was just walking down the path coming in from work, its positive I said its got ‘downs syndrome’ I just fell into his arms ‘it will be ok Liz’ don’t worry we will be fine’ he said.  My thoughts were different, what shall I do was going around inside my head, a split second thought shall I have a termination, I cant have a child with ds, its not me, Ive seen these elderly couples with ds children! Omg I cant! These thoughts were for about 10 mins!   I then felt so sick, and thought my god its my little frozen embryo it wants to be here, this one worked, why shouldn’t it be here!  I love this little thing inside of me, its growing and making me very very nauseous!  A week after our diagnosis I was a jabbering wreck, I felt like id had a mini nervous break down!  My body felt really shaky, but after a week I calmed down,  I still loved this little thing inside of me but was so scared, I cried for a week, and then I seemed to be ok, I was happy, Id got my head around it, with the love of my husband, family and friends I knew all was behind us and it was going to be ok.  I was very open about my baby telling people I was having a baby with ds, I joined support groups and got involved with the downs syndrome world! I joined Future of Downs on the internet, which were a tremendous support throughout my pregnancy, And it helped. I couldn’t wait for her to be born, I was so enthusiastic to give her the best life I could possibly give.   I knew I was having a little girl and just couldn’t wait for her, my love for her grew stronger and stronger each day.  We had a 3d scan at 27 weeks and it was fantastic, she was perfect, I was so scared of seeing her, I thought she was going to have 2 heads or something, but she was perfect, she was looking at me on the scan, facing the world, she was perfect! We were closely monitored throughout the pregnancy, having heart echo scans, and all was ok.    
On the 22nd November 2011 Clara Elizabeth Chilton was born, at 38 weeks and weighing a tiny 3lb 14oz, by emergency c section due to me developing pre-eclampsia, she was perfect, I was in awe of her, since the day she was born I was floating and still am floating, my love for my daughter is immense, I had a journey a roller coaster some call it, but it was well worth it.  I am determined to give my daughter the best possible life for her, I will ensure she has all the opportunities there is, I want her to be part of the community, lead a normal, happy life.  
I just want women who have a prenatal diagnosis that their baby has downs syndrome is not a disaster, our kids can lead very normal happy life’s, there is lots of support out there, Future of Downs was a biggy for me, they have a special forum for women pregnant with a diagnosis of ds, you have so much support and don’t feel alone.  When the doctors tell you your baby has a special need it can be quite an overwhelming feeling.  Ive heard so many negative stoties from women who were given prenatal diagnosis of ds the medical profession advising termination and so on, but just want women have a good think, I understand its a personal choice, but many pregnant women are very vulnerable.  After hearing the percentage that 92% of women terminate if their baby has ds, had a massive effect on me.  Being one of the 8% of women who continue with their pregnancy, I wanted to put my positive story across.   I feel you never hear positive stories.  My daughter is coming up to her 1st birthday, and this past year has been the best year of my life, not only did I get my little baby but she brought something special to me, and us as a family are having so much fun and are ready to face any challanges brought to us. 

Is Downs Side Up a Mummy Activist?


When I was asked recently to write a piece on Mummy Activists I have to admit it wasn’t a phrase I’ve heard that often. I guess I had never considered myself as such, although I had met self confessed warrior mummies.

You see the word Mummy to me is gentleness, firm guidance, a hug and a kiss after a bumped knee, pacing worriedly during illnesses or surgeries,  reassurance on a windy night, homework helper, finding clever ways to hide vegetables in food.

The last time I was a rather wishy washy activist was during my uni years, when I might have marched in fair weather to save the rainforest, turned veggie because my friend who was a good cook was, or sat in a library all night protesting about Poll Tax whilst drinking coffee with some rugby player I rather fancied. I’ve never been a particularly political animal. That’s what activists are isn’t it?

Well, this got me thinking, because the fact I've been asked me to write on this subject means you think I am an activist, and a Mummy Activist to boot.

The strap line of my blog Downs Side Up is “Gently changing perceptions of Down’s Syndrome from within hearts.” And there you have my definition: A Mummy Activist will change the world subtly without you even realising she’s done it.

While you are clicking Like on a quirky picture of our family with a catchy slogan on Facebook, you are internalising and normalising Down’s Syndrome. It’s becoming part of your daily life.

When you read a funny blog post about a badly timed fart or friends being held hostage when Natty hid their keys you probably think of how relevant they are for your own family, whether your children have DS or not, and so you realise that our families have more in common than you at first thought.

You may have seen our daughter Natty modeling for Frugi, Jojo Maman Bebe or Eden Project. Again a subtle inclusive message, a role model for other children with disabilities and a shining light for new parents. We’ve just returned from a fabulous group photo shoot where we gathered 8 of the UKs models with Down’s Syndrome together in the historic house of John Langdon Down who first described the Syndrome. Such a beautiful setting and so many mixed emotion standing there remembering the past for individuals like Natty. But we have been pioneers pushing barriers gently out of our children’s paths. The world is so much more their oyster these days as a result.


Perhaps you have heard me speak at a conference or training day, and watched me pour my emotions into doing that, even seen me cry at a podium. I know many say they will never forget that experience and I know I have cracked a few hard professionals’ hearts that way. My heart, is on my sleeve, and there is no better activist’s weapon.

For you see, in my opinion, getting cross and beating people over the head with my mantra is a sure fire way to get them to switch off, stop listening and box me up in their minds in a section marked ‘boring/angry disability mum’. I don't like reading non stop angry rants, and neither will you.
That said everyone'sblog is their own personal space. If you are feeling angry and need to work through your feelings by writing then blogging is a wonderful way to do it. It is cathartic and you can share remotely with family and friends your deepest fears. And that is fine, because a blog's success is not about statistics after all.

Just before Christmas, Geoffery Clark UKiP candidate called for the compulsory abortion of babies with Spina Bifida and Down’s Syndrome amongst many other nonsenses. It took me 3 days to calm down, channel my anger and write him an open letter, fuelled with love for our children and pity for him. I’m glad I waited and resisted the knee-jerk reaction letter that came into my head first. You can read the letter here: http://www.downssideup.com/2012/12/dear-mr-geoffry-clark.html

I have just returned from London where I was asked to give evidence in Parliament on the Disability Abortion Law to a multi-party commission. I decided to employ the same technique there, despite my horror at the legality of abortions ‘up to and including during birth’ for babies with disabilities. The only way to win this one was with photos, anecdotes and buckets of passion. I think it had the desired impact. Read Downs Side Up Gives Evidence in Parliament here:

Then a few weeks ago I found myself persuaded by Kateonthinice to join her in a Naked Mum programme, designed to boost Mums confidences, and celebrate our bodies that created our beautiful children.  More to the point, we must not blame our bodies, our children are not mistakes. http://www.downssideup.com/2013/01/downs-side-up-uncovered.html
A good friend volunteered her photography skills and a date was set for the shoot. Can taking your clothes off create change? Does it define you as an activist? Well the photos haven’t been released yet and already nearly £800 has been raised, but more surprisingly many Mums have written thanking me for being so brave and highlighting that Mums of children with disabilities are just like any other.


Proud, protective, and a bit squidgy round the edges.

Natty's Key Worker Writes a Guest Post

Natty was blessed to have the most amazing, loving, caring, thoughtful key worker when she attended pre-school 

Natty and H (aka Boff Lady) have a great rapport

Everyone who worked there was wonderful, but the particluar angel who believed so fervently in Natty's potential, the one who spent hours of her own time making flashcards and other teaching materials and attending SALT sessions and learning Makaton and recording every little success in beautifully made learning journals, and listening to my worries and hopes and fears and tears and frustrations, was H.
(They actually call her H, which is odd, because that's what my husband calls me too. But Natty always called her Boff Lady for a reason none of us can ever fathom.)
----------


"I have to say that initially I was very apprehensive about having a child with Down’s Syndrome join our setting. In my ignorance I wondered how we would cope with all her wants and needs in our village hall setting, where the only specialised equipment is an adult’s disabled toilet!

However we had a good transition from Portage workers, and Natty then began her 2 ½ years with us. I was lucky enough to be her key worker for 18 months.

Natty settled in extremely well and enjoyed all the busyness the session had to offer, joining in the activities with confidence and spending time with other children. She also accepted, and most of the time adhered to, the rules and routine of the setting, just like any other child would. 

Various activities and the general set up were adapted so Natty had equal access to everything. I remember she was so small when she started, she couldn’t even reach the sand/water tray!

We found Natty to have bags of character, determination, stubbornness, a great sense of humour and she certainly knew her own mind!!!
I have just so many memories of Natty’s time with us.

One of my favourites was when Natty brought the whole, very busy, pre-school to a complete standstill. We had a karaoke machine set up in the top corner of the room which was proving to be very popular! Six or seven children, Natty included, were sitting together watching and waiting patiently to ‘take to the mic!’ 

MC Natty G sings Mary Poppins, karaoke style

Eventually it was Natty’s turn and she chose ‘Let’s Go Fly A Kite’ from Mary Poppins, her favourite film at the time. The first chorus was just a warm up, giving Natty time to get used to the microphone and suss out her audience (who she felt weren’t paying her nearly enough attention) so by the time Natty got to the second chorus, we heard a terrific, ‘WHOA, WHOA, WHOA, LESS GO (dun dun dun dun dun)... FIYA KIIIIE …….' [sic]  booming around the hall! 

That was when everyone, children included, immediately stopped what they were doing and just watched Natty perform, right until the very end of her song. Half a dozen bows then followed. Natty was clearly very happy with her performance. 

The children then resumed their activities leaving the adults, including a Speech and Language Therapist who was visiting at the time, completely speechless and teary-eyed! It was so emotional to see her up there, so full of confidence and determination. Natty had proved herself.

I found Natty to be a very eager and enthusiastic learner, wanting to be challenged and stretched. At times I found Natty’s eye-contact to be extremely intense. She would hang off your every move or word, eager and ready for the next cue, like a little lion cub, ready to pounce on her prey! There were obviously times when Natty was not in the mood, not receptive, or ‘having none of it’ which can happen with any child. Activities would then be postponed or adapted.

Funnily enough, a lot of our real quality 1:1 time was spent with Natty on the potty, killing two birds with one stone you could say!! I had a captive audience and Natty had the 1:1 on which she thrived. We did everything from matching pictures (‘same, same’) in the early days, to learning phonic sounds and pictures. (ai, ai was her favorite – with the hand salute!)
So much was learnt in those most memorable sessions – and it certainly wasn’t just Natty!

The cry would go,
‘’Where’s ‘H’ and Natty??”
“Oh, in the loo again!!”



We have always been taught to praise and reward children’s efforts and achievements. Some loved to get stickers or choose a toy for themselves. Natty’s reward? She liked nothing more than some quality 1:1. A playful tickling session, or singing one of her favourite songs. ‘Five Cheeky Monkeys’ springs to mind and we would sing and giggle together with very exaggerated facial expressions!!

I believed in her. 
I believed in her potential - she had shown it to me on so many occasions.  
I worked on it, built it, and she responded – willingly and with great results.
To use that age old cliché, ‘You only get out what you put in,’ and working with Natty is a perfect example of that.

I still keep in contact with Natty and her family, and I am amazed by her progress. Her reading, her language and writing her name have all astounded me, yet Natty seems to take it all in her stride.

There is still so much for Natty to learn, but with the support from family, friends, school and a changing society, she is the kite, and the sky is the limit.

Much love,
Boff Lady! Xxx"




You might also enjoy reading: 
Learning Activities to Try at Home or 
Living Life to the Full


Evidence in Parliamentary Disability Abortion Law Inquiry

As many of you know I was asked to give evidence in a Parliamentary Inquiry into the current Disability Abortion Law in this country.



With exactly a week’s notice I was given the important honour of being asked to speak in a multi party Parliamentary Inquirty into Abortion on the Grounds of Disability that would try to:


  •      Establish and assess the intention behind the law governing abortion on the grounds of   disability.
  •     Establish how the law works in practice and is interpreted by medical practitioners.
  •      Determine the impact of the current law on disabled people and assess the groups representing their interests.
  •      Assess the effectiveness of the information and guidance provided to families following the diagnosis of a disability and the impact that has on outcomes.
  •      Examine how the law, guidance and support for practitioners and families can be developed going forward.

Very well aware that this is a highly emotive subject, I accepted and began my research. I didn’t sleep before about 3 am on several consecutive nights, reading around the law, which limits abortions to 24 weeks except in the case of Ground E abortions for babies ‘at high risk’ of ‘severe handicap’ (not defined), for whom a termination is possible ‘up to and including during birth’, and believe me, you do not want to know details of what that entails.

I found and absorbed, tried to understand and respect if possible, every conceiveable opinion from considering contraception as murder to believing in a woman’s right to choose to terminate at any stage of pregnancy and for any reason, including the baby’s sex.

I found many important ethical questions raised, such as how this difference in law constitutes disability inequality, how it must make people with disabilities feel about how they are valued in society, or how pregnant women of babies with disabilities are being singled out for a much less supportive service than those carrying a healthy baby. Even how the notion of ‘choice’ that is often used with the decision to terminate is often not so much a choice, because that is being offered as the only option and therefore parents are often not ‘choosing’, but being coerced, persuaded to go down that route which they see as the only one available.

Those whose opinions sit at either end of the scale seem to be the ones who shout the loudest and get the most media attention. This cemented my resolve to voice the experiences and thoughts of the quieter many who sit somewhere in between. My nerves grew more and more frazzled. I live in the quiet of the countryside, London is a 5 hour journey away, I’ve never even visited the Houses of Parliament as a tourist, let alone spoke on such a hot topic there.

I found out that I would have about 5 minutes to speak, that’s not a lot of time at all. So, I set about writing a piece that could contain as many real anecdotes from other families’ experiences of testing, diagnosis and support as possible, that would shout about how gloriously wonderful our children are, that would express our concerns that our children are being misunderstood and feared.

I set out on Monday morning, my speech in triplicate in different areas of my luggage in case I lost one. I printed a collage of photos of Natalia enjoying everyday activities, to hand out to the 14 MPs who might be present. After all, a picture speaks a thousand words.

The photo I handed out to the MPs, showing Natty from birth, through heart surgery and enjoying a full life.

I arrived monstrously early to clear security at Westminster, and sat down for an informative chat in the coffee shop with Sue Buckley, Head Scientist at Downs Ed.
Sadly Dr Liz Elliot was taken ill and couldn’t attend. I was yet to meet Lucy McLynn, Mum of Daniel who is Natty’s age, and an equality lawyer who would also be giving evidence, along with representatives from the Cleft Lip and Palate support group (CLAPA), Beezy Marsh, a freelance journalist with a history of research into abortion statistics and DR Kevin Fitzpatrick OBE who was to turn out to be one of the most inspirational speakers I have heard in a long time.

London was freezing, snow was in the air, the Houses of Parliament are very old and not very well heated. I had swapped my country wellies and fleeces for a serious dress and heels. That and my nerves conspired to make me shake, well, not nerves exactly, but my extreme keeness to get my point across in the little time I had.

My time came. This is approximately what I said to Fiona Bruce MP, Virendra Sharma MP, Baroness Hollins of Wimbledon, Baroness Benjamin of Buckingham, Rob Flello MP and their team, including members of the public who were present. The stenographer wrote down the exact words and the transcript will be online at www.abortionanddisability.org in just over a week. Last week’s evidence will be online in a few days. Two more sessions will follow next month including evidence from a woman with Down's Syndrome.




I believe that I typified the completely ‘average’ prospective parent before Natalia was born.  My opinions on abortion were not extreme, one way or another. I understand the need for women to have a choice, but I also have a strong sense of humanity.

I know that I speak with honesty for masses of families with loved ones with DS now. I have woven their shared stories into what follows.

When pregnant, I bandied about the universally used soundbite we all say without thinking;
 "I don’t mind what the sex is, just as long as it’s healthy…"
 (and what if it wasn’t? What is the dangerous unspoken subtext there?)

I have always been respectful of those with disabilities, but did not think it would ever affect our lives personally. Nobody does.
I call this the blissfully ignorant, arrogantly complacent time of our lives. The time before we broke through the glass ceiling, and understood what life was really all about.  The time we protected ourselves with a naiive sense of security that a healthy, clean living, woman like me would, of course, be expecting another healthy baby and that that was all that mattered. That is was the only goal in life. I think differently now of course.

I hate to think what might have happened had we known Natalia had Downs Syndrome, had we not feared the risk of the invasive tests after several miscarriages, had our midwife not wisely said it wasn’t important to know.

What if we had opted for the new early blood test, you know, "or peace of mind"? (Screens only give you peace of mind if you hear what you want to hear don’t they.)

I might have panicked, swept away on the tragic language of doctors;
the "risk of our baby having DS", their "concerns".
Being told that she had "tested positive", the ways in which she would "suffer from" the Syndrome.
I might have wanted that "afflicted" baby out of me as soon as possible, worried about the life she would struggle through, the pain she would feel, fuelled by my own fear and ignorance.  

If the medical professionals we trusted implicitly simply gave us two leaflets at point of diagnosis, one on CVS, the other Termination, and warned us gently and sympathetically not to approach any Downs Syndrome support groups because they are ‘pro life and would try to change our minds with emotional blackmail’ would we have followed their lead?

If our community midwife had rung us at home on Friday evening with the "bad news" of a "chromosomal abnormality" (or worse still popped a scribbled note, not in an envelope, through the front door for extended family to find) and straight away said there was a slot for a termination on Monday morning, would we have assumed that was our only viable option?

The answer is I don’t know what we would have done.

Perhaps I would have wanted to keep the little life that was moving inside me, and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Perhaps we would have had a balanced and unbiased consultant who gave us all the options, they must exist. Who knows.

But approximately 92% do feel there is no other way out in a society that still stigmatises disability and with support networks ever decreasing.  

I do know parents aren’t being given balanced information in order to make informed choices and are left with little or no support or couselling during or after testing, diagnosis or termination.

A woman I met recently was sympathetically told ‘this must have been a very difficult decision for you to make’ by a midwife as she birthed a baby she was sadly miscarrying naturally. Such is the assumption that parents will terminate.

Other couples, having made the decision to continue with a pregnancy are being asked if they are “sure” at each scan and medical appointment, and reminded that a late termination can be “arranged”.

I like to hope the reasons for this are the doctor’s own ignorances, an out of date view of disability, a residue from the days of institutions.

I fear it is more a question of cost.



Natty is 6, an ambassador, a teacher and melts hearts wherever she goes. She puts back far more into society than she takes from it, as she entertains, laughs, sings, dances, jokes, brings people together, even models professionally, bringing inclusion into advertising and widening our narrow concepts of beauty.  She has taught many acceptance, understanding and patience, for inclusion is a 2 way street that I sadly missed out on growing up in the 70s.

She has made me a better person.

She intuitively watches out for the emotional needs of her friends and classmates, always there for the needy, the upset, the ones with the bumped knees, anyone who needs a quick rendition of a Mary Poppins tune to rouse them.

You see, a person's worth can never be measured in pounds coins.

Having a disability does not make you sub-human and we should therefore all be protected by the same laws. There will always be extreme exceptions needed to protect the most vulnerable women in society, but the abilities of the foetus should not be a factor.

Do I think DS a serious handicap? No.

Do I think it’s a reason to terminate on it’s own? No, although I would never judge anyone's decision. It is not an easy road.

Do I think terminations up to and including during birth should take place? No. When I told those in our community about this Inquiry, all were universally shocked that this is legal in our society.

“Barbaric”
“Archaic”
“Appalling”
“I’m stunned”
“My little one was only X weeks when she was born.”
“DS, Cleft lip, club feet? Whatever next, ginger hair?
I leave you with the words of Natty’s big sister Mia, 8. The sibling I worried would be affected negatively by her disability in the early days:


To Natty
I love you so much
and you are the best sister
in the world and so preshus to me.
You are so important to me
and if you weren't in this world
my life woudn't be the same
and that would be terrible.

So, I love you very much and you mean evrything to me

Lots and lots of love from Mia xxx




That, in a nutshell was that. Others spoke factually and brought figures and legal points to the table. We were all a different shade of the same painting. Every one equally important part of the bigger picture being created.

There followed questions on whether we thought eugenics was at work. We all had to agree it very much looked that way.

What did we feel should be done to support families. Be given balanced info of all available options, offer prospective parents a chance to meet existing families, change doctors’ loaded language to more neutral and person-centred lay terms. I am still reeling from the Mum of a little one with a cleft lip who was told during a scan that her baby had ‘a facial deformity’.

There are many incredible medical angels out there. Thank you to them. Let’s create a few more, uncover the hidden statistics and get some proper balanced support for parents, whatever their decision is at the end of the day.