We loved our little Down's baby so much we adopted anotherStrangers offer sympathy. Even family and friends were shocked. But these inspiring parents feel doubly blessed
21:51 GMT, 28 March 2012
Freddie and Mimi Hazell charge down the garden path to their cottage and fling themselves through the front door. A battle ensues for prime position in front of the television. Mimi is the more determined of the two; Freddie accepts defeat.
The two children have just arrived home from school and, in between watching cartoons and raids on the toy cupboard, are telling their parents, Amanda and Richard, about their day. Freddie, eight, and Mimi, four, both have Down's syndrome.
Freddie is Amanda and Richard's own child; Mimi is adopted. Amanda, a 45-year-old GP, is well aware that people are surprised – shocked, even – that having already had one child with Down's, they deliberately sought to adopt a second child with the condition.
Happy family: Amanda and Richard Hazell with their adoptive daughter Mimi and Freddie at home
'Freddie and Mimi bring us a richness, a fulfilment we wouldn't have known if they hadn't come into our lives,' says Amanda, proudly. 'When we go out and meet other people, they assume I've given birth to two children with Down's syndrome and feel sorry for me.
'But I always try to tell them that Mimi is adopted. I want them to know we actively chose her.' The pitying reaction is indicative, she says, of the negative attitudes and prejudices that prevail towards people with Down's syndrome. And this is the very reason that Amanda is giving this interview. She wants to reassure people that having a child with the condition, far from being a 'bad' thing, is simply, just 'different'.
'There's so much negativity about it – a lot of it in the medical profession,' says Amanda. 'As a GP, I see it first hand. The very fact that expectant mothers can be tested for it is suggestive of it being a bad thing; that if your test is positive, the “difficulty” can be “sorted” with a termination.'
The termination statistics relating to Down's syndrome pregnancies certainly make for bleak reading. In 2010, 92.1 per cent of women who learned they were carrying a child with Down's chose to terminate the pregnancy, according to the National Down's Syndrome Cytogenetic Register for England and Wales.
Amanda is worried that this number may rise with the advent of a new blood test being developed in the U.S. to detect Down's syndrome, rather than the current amniocentesis test, which withdraws fluid from the amniotic sac with a needle.
“Richard and I accepted we might have a child with Down's. Termination wasn't an option”
'Many women are worried about the risk of miscarrying and don't have the amniocentesis for that reason,' she says. 'But if Down's syndrome can be detected by a simple blood test, then more women will have the test and that will almost certainly lead to even more terminations.'
Amanda and Richard, a 57-year-old electronics engineer, live with their two children in a 17th-century cottage in Surrey. They met at a local drama group and married in 2002. A year later, struggling to conceive, Amanda had IVF and she and Richard were thrilled to learn the procedure had been successful.
Early in the pregnancy, Amanda underwent a nuchal fold ultrasound test, in which fluid in the neck of the developing foetus is measured. This predicts whether a woman is at a high or low 'risk' of having a child with Down's syndrome. Amanda was told she was at high risk.
The condition affects around one in 1,000 babies born in the UK – about 750 a year. The possibility of having a child with Down's syndrome rises with maternal age. Amanda was 36 when she had Freddie and her risk, therefore, would have been higher than for a woman in her 20s.
Down's syndrome is a genetic condition in which a person inherits an extra copy of one chromosome. People with the syndrome have three copies of chromosome 21, rather than the usual two. The cause is not known.
Having been told she was a 'high risk', it was up to Amanda whether she had an amniocentesis test. She declined. 'We knew we weren't going to proceed further,' says Amanda.
'Richard and I accepted we might have a child with Down's. Termination wasn't an option. 'But you see the negative language that is used – it's a “risk” rather than a possibility. 'It wouldn't be fair to say it wasn't an issue at all. It obviously gave us some concern. We knew that children with Down's syndrome have learning difficulties and that there would be many challenges – but we chose to go ahead.'
Upside of Down's: Freddie and Mimi playing
So, after a difficult pregnancy, little Freddie was born very early, at 32 weeks, weighing just 3lb 13oz. He was whisked away into the neo-natal unit and it was five days before doctors confirmed he did, indeed, have the condition. Amanda recalls: 'Despite the warning, it came as a shock.
'Richard spent about half an hour absorbing the news and was then absolutely fine. He'd been to see his Mum after Freddie was born and said there was a strong possibility he had Down's syndrome and she'd replied: “Well, he's still a little boy, isn't he” 'For Richard, that summed up the situation. But it took me longer to accept – several weeks.
'I'd feel positive about it, and then feel quite negative.' Serious health problems beset Freddie for the first year of his life. A blockage in his gut required surgery, as did an undeveloped windpipe. But the operation on his windpipe was unsuccessful and just before a second operation on it he had a heart attack.
'At one point, we were told he had a five per cent chance of survival,' says Amanda. 'I lived at the hospital for five months, I didn't go home.' Thankfully, little Freddie turned out to be a fighter and was eventually allowed to come home.
But, despite all the stress and heartbreak, the couple decided to try for another child. And after a second IVF procedure failed, they began to think about adoption. It was Amanda's idea to adopt a child with Down's syndrome. 'I know some people might not understand that, but it felt like the logical thing to do,' says Amanda. '/03/28/article-0-1227AE94000005DC-937_468x298.jpg” width=”468″ height=”298″ alt=”Mimi at nine months ” class=”blkBorder” />
Bringing joy to their lives: Mimi at nine months
And yet the couple are adamant that the positives far outweigh the negatives. Most Down's syndrome children suffer with learning difficulties, though Freddie and Mimi are doing well at the special school they attend. 'Mimi's speech is quite good but Freddie needs to work a little harder on it. 'He understands a lot more than you might realise, though.
'He won't know just that he's seen a bird, but the type of bird it is. He does find it difficult to focus but he really is quite creative.' Amanda is under no illusions about the challenges she faces. 'When I see parents with their non-disabled children I realise that it is much harder work for us,' she says. 'How would I describe the difference It's having children, plus!'
But there is a lot of joy in their everyday lives. 'Because it is harder for Down's children to learn new things, when they do pick something up it becomes an achievement, which is lovely to see,' explains Amanda. 'For example, with other children, you might not think much about them drinking out of an open cup, but for Freddie and Mimi it was technically quite difficult to learn, so it made us very proud when they did.'
And then there's their ebullient nature. 'Mimi lives for swimming and painting and Freddie loves acting out scenes with his toys,' says Amanda. 'They like playing board games with us and they love television.'
Amanda believes that although there remains some stigma attached to Down's syndrome, in some ways attitudes have changed for the better. 'Education has improved and you do see people with Down's syndrome in jobs, and some of them marry and lead semi-independent lives.
'Medical advances mean that the life expectancy is much longer now, too. There was a time when it was 20 to 30. Now it's 60 to 70.' Freddie is in relatively good health but next month he must undergo yet another operation. This time it will be to close a hole in his throat from a tracheotomy pipe that was fitted when he was a baby to help him breathe.
'Obviously you worry but we hope it will be ok,' says Amanda. She says she and Richard don't look too far ahead. 'We don't know what the future holds for Freddie and Mimi and what sort of lives they will be able to lead. We take each day as it comes.' And so the adventure continues, filled with challenges and ups and downs. Life is never dull, and the rewards are beyond measure.