Sarah Roberts admits this was her first reaction when told that her baby son had Down’s syndrome. How she wishes she knew then what she knows now.
On a dimly lit hospital ward, in the early hours of the morning, Sarah Roberts’s world imploded. Cradling her newborn son Oscar, just an hour old and her first child, a paediatrician spoke three words which, Sarah says, still echo in her mind today. ‘Standing by my bed, she looked down at Oscar and said sombrely, “I’m so sorry.”
I was still coming around from a general anaesthetic, and felt totally confused. Why was she sorry? Then she delivered the bombshell. “We believe your baby has Down’s syndrome.”
‘I looked down at Oscar, his little face peeking out of the swaddle of blankets he was wrapped in. I’m ashamed to admit it but I wanted to put him down and run away. This wasn’t the baby I thought I was having. I wasn’t meant to be a mother to a disabled child.
‘So many terrible thoughts flashed through my muddled mind. Was this my fault, had my body failed? Could my marriage withstand this? I had a vision of me as an elderly woman, leading a grown man by the hand, this child forever dependent on me, never able to make a life for himself. Moments before, I’d been a new mother to a perfect baby boy. In a heartbeat my life, I believed, was ruined.
‘How I wish I could go back in time and speak to that terrified woman. What would I tell her? “You’re stronger than you think. You’ll love this baby more than you can possibly imagine. And he is so, so much more than this diagnosis.”
‘Today I look at Oscar, my gorgeous seven-year-old son who loves riding his scooter, playing football and attends mainstream school. I wish that woman knew the fantastic little boy her baby would grow into.’
Following a normal pregnancy, Sarah, who lives in Woking, Surrey, was induced on her due date in July 2012, after a slight drop in her unborn baby’s heartbeat was detected at a routine appointment. ‘I was sent to hospital to be monitored but the doctor, while reassuring me the baby was fine, decided he was better out than in. I wasn’t panicked, I felt excited about meeting my baby,’ remembers Sarah, 41.
‘My labour started in the early evening, but around 1am the baby’s heart rate dropped dramatically. Before I knew it, I was on a trolley being rushed to theatre for a general anaesthetic and emergency caesarean. It was terrifying. When I woke and saw my husband Chris cradling Oscar in his arms I felt a huge surge of relief. Everything was OK. People have asked, didn’t we notice anything different about Oscar’s features? But I was still spaced out, and to both of us he just looked like any other squished newborn. I thought he was the most beautiful thing I’d ever seen.’
Twelve weeks into her pregnancy, Sarah had had the routine blood test and scan to assess the ‘risk’ – a word she hates for its negative connotations – of her baby having the chromosomal condition Down’s syndrome.
‘It was presented to me as just part of the process. I assumed all women had it, and when a letter arrived telling me the results were “low risk”, I never gave it another thought,’ says Sarah. ‘Having a baby with a diagnosis of Down’s syndrome didn’t happen to people like me, I believed. That was something that affected older mothers, and although I’d loved working with children with Down’s syndrome in my job as a dance teacher, I didn’t think I could have coped with having a child with the condition. I look back and realise how naive I was.’
Sarah admits that had she known before his birth Oscar had Down’s syndrome, she would have contemplated a termination. ‘It’s hard to admit that, and I don’t know if I could have gone through with it, but I can’t pretend I wouldn’t have thought seriously about it. I try never to judge a woman who makes that choice. I know how devastating it is to be given that news, especially as it’s often delivered with such pessimism. But it’s hard, because are they saying a child like Oscar isn’t good enough?’
Sarah and Chris spent the first ten days of Oscar’s life in hospital, during which time he was diagnosed with two holes in his heart.
‘Grieving is a controversial word to use, because I know my experience is not the same as losing a baby, but I was grieving – for the baby I thought I was having, and for the mother I thought I was going to be. One selfish question dominated my thoughts: Why me?
‘I loved Oscar fiercely and felt so protective of him. But I didn’t know if I was strong enough to be the mother he needed.’
For some couples a diagnosis of Down’s syndrome can destroy them, but Sarah credits Chris with a calm strength that helped galvanise them in those early weeks. ‘I know of a mother whose husband left her during pregnancy, unable to face raising their child. But Chris was my rock,’ says Sarah. ‘While I’ve always been the worrier, he’s a fixer. Long before my tears had dried, he’d accepted who Oscar was and loved him for it, not in spite of it.’
Home with their son, Sarah began to try to carve out a normal experience of first-time motherhood after such a traumatic start. ‘I took Oscar for walks and signed up for baby classes, but it was hard seeing other babies develop faster than him. I’d catch other mums glancing at me, and I knew they were thinking, “I’m glad that’s not me.” I lived in dread of the pitying looks I’d get when someone peeked into his pram and saw his features, and felt compelled to blurt out, “He has Down’s syndrome.” It was like ripping off a plaster – if I got it out there quickly it wouldn’t hurt as much. Joining a group for other “DS mums” helped. They understood in a way no one else could, and I didn’t feel ‘different’ or endlessly compare Oscar’s development to other children’s.’
It wasn’t until Oscar was around nine months that Sarah felt what she describes as a ‘fog’ begin to lift. ‘As we settled into a routine – Oscar thriving and such a happy, easy baby – gradually a feeling of peace came over me. The shock and panic faded. I realised I was coping, and not just that – I loved being Oscar’s mother,’ she says. ‘It took a long time to accept that life doesn’t always go to plan, but once I did it was as though a weight had been lifted.’
A month later Oscar had surgery to correct his heart defect, without which he wouldn’t live to see his fifth birthday. ‘That was a harrowing experience. But it also helped me realise Down’s syndrome wouldn’t kill my child, it wasn’t an illness. That experience gave me a new perspective and when he came through the operation with a normal, functioning heart, I promised myself I’d never forget there are far bigger things to worry about than Down’s syndrome.’
In January 2014, Sarah launched a blog called ‘Don’t Be Sorry’ about her life with Oscar. ‘I’d been writing privately for several months, finding it cathartic and also wanting to keep a record I could look back on,’ she says. ‘A friend suggested I publish my scribblings, to help other parents like us. Although there were other blogs, a lot of them glossed over the challenges, painting life as only positive. And any parent with an additional-needs child knows there are great days and bloody difficult days! I wanted my blog to be honest and real.
‘As parents commented on my posts and contacted me privately, I realised every emotion I’d experienced was normal. I wasn’t alone in feeling blindsided, resentful, frightened or overwhelmed by a Down’s syndrome diagnosis, and hearing what other children were achieving gave me so much hope for Oscar’s future.’
When Oscar was 16 months old, in December 2013, Sarah gave birth to his brother Alfie, now five, and 20 months later, in July 2015, his sister Flo, four. ‘Particularly with my decision to get pregnant with Alfie, I had a deep-rooted need to have a “normal” experience of becoming a mother. I feel guilty admitting that, but it was instinctive. I felt I had to achieve what everyone else did and just have a healthy baby and take him home, without any of the trauma that had surrounded Oscar’s birth,’ admits Sarah. ‘It was also important to both Chris and me that Oscar had siblings and his own little support network in the future.’
With both her second and third pregnancies, Sarah made the decision to have an amniocentesis test, which carries a risk of miscarriage, to be certain whether either baby also had Down’s syndrome.
‘There are a lot of mothers who’ll struggle to understand why I did that – it’s a divisive issue in the Down’s syndrome community. And it wasn’t a decision I took lightly, I agonised over it, with Chris vowing to support me no matter what. I asked myself endlessly, “Why wouldn’t I want another Oscar?” and felt a huge sense of guilt.
‘For me it was about feeling in control. Oscar’s diagnosis had come as such a shock, I needed certainty and to be prepared. I knew there was a risk of losing the baby but I just had to know. I’ve been asked many times what would I have done if Alfie or Flo had had Down’s syndrome – would I have terminated the pregnancy? I can never say for certain, but I don’t think so. Because I knew I would love these babies regardless.’
Today Oscar attends the same primary school as his siblings and, says Sarah, is a happy, mischievous and caring little boy. ‘At a recent birthday party, another child tripped and fell. The other children carried on playing – it was Oscar who helped him up, stroking his arm gently. I thought my heart would burst,’ she says. ‘There are always battles to fight when you have a child with additional needs. Whether it’s been getting to the bottom of the hearing problems he’s experienced since he was a baby – which has meant more surgery for him – or securing enough funding for him to have the support he needs in school.
‘It’s relentless, but all I’ve ever wanted is for him to lead the best life he can. And while he may take much longer to reach his milestones compared to other children – for example his speech is still very limited and we rely on signing – when he hits them it’s a joy like no other. I sent him back to school this month in pants for the first time after he finally conquered toilet training – and I can’t describe how proud I was of him.’
Sarah says someone once asked her, if she could wave a magic wand, would she change Oscar and take his Down’s syndrome away. ‘I’d take away the health problems he’s experienced and give him more speech, but other than that, no. To me, he’s just perfect as he is. What I would change is the prejudice and pity that still surrounds his condition, something I was once guilty of myself. It breaks my heart that there will always be people who’ll immediately write him off, never knowing the real Oscar. ‘I’d love to introduce him to the paediatrician who delivered the news of his diagnosis with such sadness, and say to her, “Don’t be sorry, he’s amazing.”’
Sarah’s book For the Love of Oscar will be published by Soho Friday on 3 October, price £8.99. Find Sarah on Instagram @dontbesorry2
Interview by Eimer O’Hagan