Cruel. Uncaring. A drain on the NHS …these are just some of the insults levelled at the brave mum who just won a huge hospital payout, saying she'd have aborted her son with Down's Syndrome had she been tested for the condition.
As the court case sparks national debate – with many applauding the mum's honesty about raising a child with the condition – one mother of a 12-year-old girl with Down's Syndrome gives her searing verdict.
Mum-of-three Hayley Evans lives in Bridgend Wales with husband Steve and her three children, Hollie, 12, Poppie, eight and Lillie, four.
"I fell pregnant with Hollie when I was 20 and the blood test told me I had a one in 647 chance that she had Down’s Syndrome.
Because of my age, I wasn’t offered another test but I would never have aborted anyway. I know too many people who can’t have children so I see every child as a blessing.
Hollie was born at Christmas, 2007, and on New Year's Eve I was in her bedroom putting all her new clothes away when the paediatrician rang to tell me she had Down’s Syndrome.
At 20, and a new mum, I knew nothing about Down's Syndrome and had never met anyone affected by it.
After Googling the condition, and being greeted with negatives, I was left shocked, devastated and pretty scared about what the future held.
When Steve and I went to the hospital to see the doctor, the doctor looked down at Hollie and said, “This one slipped through the net.”
I was so furious I walked out.
It's hard to see other children hitting milestones
When Hollie was young, we would visit friends and family and see their children hitting milestones before her and it's hard not to compare.
She didn’t start to say proper words until she was almost three – but she did know sign language at the age of two.
She didn't start walking until her fifth birthday and it was hard seeing her with her friends, who were zooming around, while she was pulling herself along furniture. But I knew she'd get there in the end.
That's why, despite everything we have been through, Edyta Mordel winning the payout really makes my blood boil.
The NHS are under a lot of strain and I think this is just selfish.
I hope the child doesn't find out later what his mother has done.
Another mum hits back at payout decision
Jacqui Hicklin, 40, who lives in with husband Steve in Gloucester and is mum to Sienna, five, and Leonie, three, says:
"The news that Sienna had Down’s Syndrome was delivered quite brutally by a community midwife, nearly 24 hours after she was born.
I was numb with shock, staring at Sienna to see whether I could see it too. I was full of the fear of the unknown but it makes me feel so sad to see a mum suing the NHS because she has a child with Down's Syndrome.
She's saying it's a terrible thing to have a child with Down's Syndrome, which is a damaging message.
I'm not saying that everybody can cope with a child with a disability and I'm sure there are people out there that wouldn't and that's their personal choice.
But the NHS saves so many lives including my daughter's and it's makes me angry that she is taking money out of it for this."
Quit my job to help with incontinence
The hardest thing for us is that Hollie is still incontinent, due to a bowel condition related to Down’s Syndrome, and she still has to wear nappies.
She started school at a mainstream primary but had to leave in year three, aged seven, because the school could no longer “meet her needs”.
She went to another nearby school and I was really worried that she would be bullied there but the teachers and pupils were amazing.
The kids would even tell the teacher “I think Hollie's been to toilet, I can smell Hollie” and it didn’t faze them.
Even so, I had to give up my job as a carer because I could be called to the school any moment to deal with an explosive mess.
If she hadn’t been to the toilet for a while, it would be so bad I would have to bring her home to shower.
When she reached secondary age, we decided to send her to a specialist school because she would have been the only one in that school wearing nappies, which wouldn’t be fair on her or the other children because she’s not always aware she’s been and she would be quite happy to sit in a dirty nappy all day.
Changing a 12-year-old on public loo floor
At home, Steve and I change her on a special changing table but it’s really hard when we're out and about and there's nothing to put the older child on.
I carry a bin bag to put on the floor of a disabled toilet to change her or do it standing up which is difficult.
Then there’s the sleepless nights. Children with Down’s syndrome don’t produce the melatonin needed to make them feel tired, so she won’t give in at bedtime.
She now takes medication for that but she will still wake us up a 5am at the weekend.
Down's Syndrome hid Hollie's cancer
Down's Syndrome can also mask the symptoms of a more serious illness – as we found to our cost.
Hollie was constipated from three months old, which doctors put down to the condition, and she came out in a rash which they said was burst blood vessels from straining.
When she started crawling she was covered in bruises. Again it was dismissed as normal.
At 19 months old we took her swimming and people were looking at us like we had harmed her – she was black and blue – so we took her straight to a new surgery.
A blood test showed she had leukaemia – which is more common in children with Down’s Syndrome – and she spent four months in Cardiff having chemotherapy with Steve driving to his job as a glazier near Swansea every day from there.
What is Down's Syndrome and how many babies are born with it?
- Down’s Syndrome – also known as Down Syndrome or trisomy 21 – is a genetic condition that means someone is born with 47 chromosomes in their cells instead of 46 and it can cause a range of learning challenges
- People born with the condition nearly always have physical and intellectual disabilities
- Each person with Down's Syndrome will have different degrees of learning disability, including being slower to learn sitting, standing and walking
- Around one in 10 children with Down's Syndrome also have another condition, such as ADHD or being on the autism spectrum
- There is no “cure” for Down's Syndrome, but there is support available, such as access to healthcare specialists and development therapists
- People with Down's Syndrome are more likely to have certain health problems however, such as heart disorders, hearing and vision challenges and thyroid issues
- Around one in every 1,000 babies born has Down’s Syndrome and two babies a day are born with it in the UK every day.Around 40,000 people in the UK have the condition and most grow up to live independent lives
Some days you want to give up
Hollie has been in remission for almost 10 years but the previous leukaemia means she is more likely to get cancer in the future, which is a constant worry for us. We dread the yearly blood test.
Living with disability can be hard and some days you just feel like you want to give up because you can't fight anymore for them.
Just this week I was in tears because I felt so helpless over her bowel condition, which leaves her in so much pain and frustration.
But the good days outnumber the bad days and we wouldn't change a thing about Hollie. In fact, life would be quite boring without her."
Wouldn't Change A Thing.
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