My baby has Down’s syndrome? Thank goodness for that!
Mother sees only positives in her daughter’s disability
WHAT do you say when your consultant calls with the news so many expectant parents dread? When Hazel Toal was told her unborn baby had Down’s syndrome, her response stunned the doctor.
‘I just said, “Thank goodness for that”. The consultant wasn’t used to that. She usually gets a far more negative reaction.’
Four years on, little Emily Toal is the apple of her mother’s eye. She has waistlength hair and a sparkling smile. She loves Taylor Swift and the Spice Girls, has just taken part in her first dance display and attends a mainstream nursery.
‘Emily has Down’s syndrome, she isn’t Down’s syndrome,’ says Hazel. ‘It does not define who she is.’
Attitudes to children with Down’s syndrome remain complex. Last year, scientist Richard Dawkins caused controversy when he said they should be aborted, tweeting: ‘It would be immoral to bring it into the world if you have the choice.’
There was considerable outrage at his remarks and he was eventually forced to apologise, but the fact remains that almost 96 per cent of those told their unborn baby has Down’s syndrome choose to terminate.
‘I think the percentage would come down considerably if people knew what I know,’ says Hazel. ‘That there’s an intoxicating love that comes with having a child with Down’s syndrome. That it’s all right. That having a baby with Down’s syndrome could be all right for you.’
Hazel, a working mother from Erskine, Renfrewshire, became pregnant at 37. She and her husband James had married the year before and both had sons from previous relationships. They felt a baby would complete the family.
She says: ‘We’d found each other and there was that sense of feeling you deserve things just to be perfect.’ Yet from the start of the pregnancy, Hazel felt something wasn’t quite right. ‘I’m quite instinctive and I just had this very strange feeling. There was just something very different about the way my whole body was reacting.’
When she went for her 12-week scan, her fears were realised. ‘I was watching the sonographer, I wasn’t watching the screen, because I knew I would be able to tell straight away from her reaction if things were OK. And sure enough, she kept scanning and measuring, and not saying anything, and then she went out the room to get a consultant.’
The scan had revealed a thickening of the nuchal fold, often an early sign of Down’s syndrome. Following a range of blood tests, the Toals were told the news.
The foetus had a one-in- six chance of Down’s syndrome, a one-in-six chance of Edwards’ syndrome and a one-in-three chance of Patau syndrome. Babies with Edwards’ or Patau have a high risk of being stillborn and life expectancy can range from hours to months. Many are born with physical deformities.
‘When we went home, we were in a bit of a mess,’ Hazel says. ‘You’ve got to try to remove yourself from the situation and think not just of yourself but the whole family. You have to get yourself into a place where you’re trying not to be too rose-tinted, but trying to be too negative either. It’s hard.’
She opted to have a chorionic villus sampling test, an invasive procedure in which two in every 100 women experience a miscarriage, in order to find out more about the situation. When the call came telling the couple that the baby had Down’s syndrome, they were flooded with relief – even when a later scan revealed Emily had a hole in the heart.
Hazel says: ‘We had already decided that if it was just Down’s syndrome we would go ahead with the pregnancy. I have a cousin with Down’s who I’ve always had a huge amount of involvement with and she’s brilliant, so it was never a question for us.’
Hazel went into labour at home two days before she had been booked in for a Caesarean. The whole process was so quick she gave birth on the bathroom floor.
‘Colour flooded into her face and she started crying,’ she says. ‘We wrapped her up in a towel and she was just beautiful. We were mesmerised. She was perfect. And she fed straight away, there and then. All the worries just fell away. When we got to the hospital, there was a whole team and a consultant wait- ing – but by that time she was fine, all snuggled up and happy.’
Emily underwent heart surgery before she was three months old and has since had further procedures. Yet today, making jokes, dancing along to the TV and eventually falling asleep on her mother’s lap, she is hale and hearty, the very epitome of a healthy little girl.
Hazel says: ‘One of the big worries is that you think life is going to change completely. You think, “Right up until I die my life is going to be completely different from what I thought it would be. This is it. This will change everything”. But the great revelation is that it doesn’t. You realise that really quickly. She needs her nappy changed, she needs to feed, she’s smiling – it’s all pretty much what it would be with any other baby. Things happen at a slightly different pace, but they do with lots of children. ’
AS Emily became a toddler, Hazel realised that one of the things she enjoyed most was watching all the tiny milestones she reached. ‘It’s so rewarding,’ she says. ‘There are so many of my son’s achievements that passed me by when he had them. But with Emily, every achievement that she makes is just so appreciated. Everything she does, you think, ‘Oh, I can’t believe it.’
She tells me about taking Emily for her audiology test that morning (children with Down’s syndrome can sometimes have hearing problems and it can be difficult to test their hearing when they’re young) and realising that she was responding.
‘It was amazing, I was so proud of her,’ she says. ‘ This is yet another big milestone for her and it means so much.’
That doesn’t mean things aren’t hard sometimes. ‘I think it’s really important to talk about it, and to be honest,’ Hazel says. ‘There are some parents who just have a lovely rosy view of the whole thing, who only promote the positive – and I think that can be off-putting as well. Sometime you need to hear the honesty. Saying it’s all wonderful makes you feel you’re not being told the truth.’
So what is the truth? ‘The realism is, yes, it’s extra work. James has worked tirelessly with her and if she is communicative and bright, a big part of that is to do with how much James has done with her. When she was learning to walk, he spent hours with her, literally moving her legs for her. You just have to learn a whole new way of doing it. You have to learn with her.’
Other people’s reactions to Emily can frustrate Hazel. ‘People stare at her. She is quite engaging, she does draw people into her, but some people will walk past and they’ll stare at her the whole time. And I think, are they staring at her because they’re not sure whether she’s got Down’s syndrome, do the not realise what their body lan- guage is doing, or are they just being plain ignorant?
‘If somebody’s got a difference, you either don’t look at them or you ask. Ask the parents. I’ve not come across any parents of children with Down’s syndrome yet who are not perfectly happy to engage in conversation with anyone.’
TODAY, attitudes are changing. There are increasing numbers of people with Down’s syndrome playing a greater role in society. Acceptance and understanding is greater than it has ever been.
Take Jamie Brewer, for example, who has appeared in hit show American Horror Story and who this month became the first model with Down’s syndrome on the catwalk at New York Fashion Week; or Lauren Potter, the sharptongued cheerleader in Glee.
There are young men and women with Down’s syndrome in Britain today who own businesses, go to university, drive cars and get married.
‘There’s a lot more positive stuff out there now,’ says Hazel. ‘I think people who are reasonably well informed know that there are many people with Down’s syndrome leading normal lives out there. It’s a wide spectrum – they’ll achieve what they can achieve. And nowadays there is a lot of support and help for that.’
She adds that she would like to set up a support network for prospective parents who know they are expecting a baby with Down’s syndrome, so they can speak to parents such as herself to find out the reality of the situation. She is in talks with the maternity unit at Glasgow’s Southern General Hospital and hopes it may become a reality in the new year.
‘I think that would really help,’ she says. ‘Just having that support and being able to ask questions of the people who really know what it’s like.’
Hazel doesn’t know what the future holds for Emily, but she says that doesn’t frighten her. ‘You have to be quite fluid and stay realistic. When she was born, I would have said I want her to go to mainstream school, I want her to be as normal as possible, but as time has gone on I’ve realised you have to be flexible. My hope is she’ll go to mainstream school and integrate happily – but that might not happen. It’s got to be what’s best for her.
‘I think that’s what you have to do with your children anyway. You can have all the aspirations in the world for your kids, but if they’re not happy you need to forget your own aspirations and make sure they are aspiring to what they want to be.’
She smiles as Emily sleeps in her lap. ‘I just wish I could bottle this feeling,’ she says. ‘I’ve never come across a parent of a Down’s syndrome child who doesn’t absolutely, with every breath in their body, adore their child.’