Family Testimonials

My pregnancy was an extremely traumatic time where termination was recommended to me over and over again and the words "I'm sorry" were included in most hospital appointments. I'm not against testing,I'm not even against termination. But what I am against is the negativity around down syndrome and what professionals seem to think it means. Instead of "I'm sorry you're going to give birth to a child with down syndrome." How's about, "congratulations, you're going to give birth to a superhero!" If I could change one thing about this world it would be to change people's perceptions about our children x

- Emma, 27

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I terminated my pregnancy at 18 weeks after a positive diagnosis when I was 21 years old. I have gone on to have 2 kids. If it happened now I think I would continue. I have learnt more now than what I knew back then.

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- Clare, 34

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​I want that all professionals involved in Nahia's life think further from 'she's DS' and blame her diagnosis for

all sorts of problems. I want them to think out that box, to challenge my daughter thinking I want her to do this how I'm going to help her to achieve this? Instead of 'she's doing great' and a fake smile.

Ester, 36

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Matilda was born at 29 weeks due to placenta abruption , delivery by c section . Pretty much after birth they already has there suspicions and asked us to sign a paper giving permission to do a genetics test . A day later whilst I was taking matilda her expressed milk it was just blurted out the results are back and she has down syndrome . I was alone we already knew she was it was just a shock to be told so bluntly . I asked them to call my husband in and talk to us both . A day later 2 ladies visited and totally crushed us by saying what she wouldn't do . And how far behind her peers she would be . Nothing positive was said to us . We'll she is 21 months she walks she has some words she can say and she is signing . Amazing really for a 29 weeks baby and to have a ds diagnosis 😊 more positivity not just the negative

Leanne

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My pregnancy was quite tough. I was carrying too much fluid. At 29 weeks a scan showed our baby had a condition called Duodenal Atresia (stomach and intestines weren't joined together) we were then told 1 in 3 babies with this have Down Syndrome. We refused the amniocentesis. I was already at a risk of loosing our baby due to the high fluid amount. He was born at 38 weeks. We were told he had markings of DS. Duodenal Atresia, cataracts, low tone and, CHD. It was a lot to take in. I didn't have any negativity from staff when he was born. It was when we were given the results from the genetics test to confirm ds. They came in with the DSA leaflets handed me them ( I was alone) they said Aaron has t21 but sure you know what your doing ( I'm a child care worker) then they walked away. I would have liked them to make sure my husband was with me for a start, and deliver the news better. When Aaron was four weeks old I was told by a consultant that we would be tested in future pregnancies. I said no I wouldn't want too. She then replied with do you really want another baby with ds? I found this very upsetting as my baby is my complete world. Things need to change

Lisa, 33

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I was 39 when I had Lucy, and we got an antenatal diagnosis after out 12 week scan. Rather than general all round negativity, I remember general indifference, punctuated but several moments of utter disgraceful insensitivity and a few of outstanding loveliness.
Our hospital wasn't overly forthcoming with help or information, we asked for counselling but there wasn't any available.
Ever since Lucy was born I have made a point of trying to help others in that situation, and to pay forward the wonderful support I received from people online, either on line myself or in person. This isn't in anyway a negative experience. Lucy is the best thing that ever happened.

Catherine, 41

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When Eliza was born and I realised she had Down syndrome I thought my world had come to an end. What I realise now is that it was just the start of an incredible journey with my amazing little girl. Yes it can be hard but it's more rewarding than anything I could of imagined xx

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- Hannah, 28

Since having Theo I have learnt to appreciate the small things. There is no milestone too small and no mountain too high. Sometimes, the best things in life are the unexpected surprises and can actually feed excitement back into your life. I have found on my journey that stereotypes can be scary, but they don't live up to those cliché labels. I now celebrate that being different is in fact ordinary and that being one of a kind is extraordinary. Once Theo entered my life I blossomed into a stronger person with a thicker back bone, but a softened heart. This is because love has shown through all of the hard times, that it is still unconditional and it does not discriminate. My son has taught me that my emotions for him are boundless and now I cherish all life as a miracle

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- Yas. 21

I had quite a good pregnancy I was actually 15 when I had her. I refused testing for down syndrome as it would make no difference to me. Scarlett was born via c section due to breach position.As soon as she was born  instantly knew something was wrong! 9 hours later I got to see her and that's when I was told "I'm very sorry but we think your baby has down syndrome" from that point I think everything went blank. All I could think about was is she going to survive? Have I done anything wrong? I didn't care if she had down syndrome.she was still my baby!I could change one thing it would be for professionals to stop apologising and listing all the things they 'cant' do and focus on the things they 'can' do!

- Alisha, 17
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