We wouldn't change a thing about our Down's syndrome babies – look at them now

SARAH Reynolds, 41, is a full-time mum and lives in Northampton with husband Toby, 45, a company director, and their six children Reece, 17, Rhianna, 14, Roscoe, six, Raeleigh, four, Rafferty, three, and Rheagan, 18 months.

“Lying on the hospital bed, I looked at the radiographer’s solemn face as she studied the screen.

“After suffering 20 miscarriages, I was just relieved to reach the 12-week point. But my emotions quickly turned to fear as she gravely said: ‘There’s something wrong with your baby.’

“A week later blood tests confirmed my sixth baby was a girl and that she had Down’s syndrome (DS). It had been clear from the scan that there was a high chance the baby had a chromosomal condition, so I wasn’t too shocked – and nor was I devastated.

“I actually felt relieved it was ‘only’ DS and not a more serious condition. I knew I was going to carry on with the pregnancy, as having lost so many babies I felt very protective of this one.

“I know now from other members of the DS community that it’s not unusual for couples to be in different places emotionally when they first receive a diagnosis – and that’s what happened to me and Toby.

“He was heartbroken and wanted us to terminate the pregnancy, afraid it would be too much for us. I was adamant we’d cope and although Toby never stopped feeling anxious, he accepted my decision and we agreed to face it together.

“The pregnancy was different from my others because of how people reacted. As my bump grew, I was open about the fact the baby had Down’s and often the news would be met with a pitying look.

“Some people, including friends, told me I should have a termination, despite me explaining our decision. I found it so hurtful because, despite my worries, I loved my baby deeply.

“To help prepare our other children, I bought them books about DS and told them the baby might need to spend time in the NICU, because a scan had picked up a serious heart condition. I wanted them to understand she’d need extra attention, while also enabling them to just accept her as their sister. 

“Rheagan was born by C-section on April 26, 2019, a month premature, weighing 5lb 13oz. Holding her in my arms, I felt the same surge of fierce maternal love I’d had for all my children. Toby was beaming, his fears disappearing as he gazed at her tiny, beautiful face.

“The first year of Rheagan’s life was challenging. She had heart surgery when she was just three months old and was admitted to hospital multiple times with respiratory infections. And now we’re continuing to try to protect her from both Covid and winter bugs.

“Despite her health issues, she’s just like any other toddler – adventurous and full of fun. Her siblings adore her and don’t treat her differently. One day I know the rest of them will all fly the nest, but there isn’t that certainty for Rheagan. We take it a day at a time and celebrate every milestone she reaches.”

Sharon Crowley, 45, is a project manager and lives in Manchester with her husband Jason, 50, a lecturer, and their children Ellie, 11, and Billy, eight.

“Walking into the hospital room, I stared in confusion at the scene in front of me. Two doctors were examining my two-hour-old daughter while my husband Jason wept. Moments before, I’d gone for a shower, leaving Jason cuddling Ellie, and now I had no idea what was going on.

“After going through a checklist and the word ‘mongoloid’ being used several times, one of them said: ‘We believe your daughter has Down’s syndrome. We’ll do a blood test to confirm it.’ Then they left the room, leaving Jason and I in devastated silence.

“Eleven years on, I still feel guilty about the days that followed Ellie’s diagnosis. Plunged into sadness, I felt detached – she wasn’t the baby I thought I was having. I’d had two scans during my pregnancy, neither of which had sounded any alarm bells.

“Jason had to give Ellie her first bottle, because she struggled to breastfeed, and do the first bath, as I was so upset.

“We both felt terrified about how we’d cope with a disabled child, not helped by the hospital leaflets we were given, which painted a bleak picture of Ellie’s future.

“We even briefly discussed putting her up for adoption, but quickly agreed that, irrespective of her diagnosis, she was our daughter and we could never give her up.

“When she was two weeks old, we were told she had a large hole in her heart. Hearing that we could lose her made me realise how much I loved and wanted her. That first year was hard, though. Not only was I anxious about her heart condition, but I also found it hard to leave the house for fear people would stare and pity her – and me.

“I felt isolated because the advice for new mums on things like weaning and development isn’t geared towards DS babies. What helped was finding a local group for DS mums – that solidarity was what I needed.

“I’d always wanted more than one child and felt Ellie would benefit from the support and friendship of a sibling, so when I became pregnant when she was three, I was delighted.

“I had a blood test to screen for DS, and the results suggested the baby only had a low chance of having it. If the test had been positive, I wouldn’t have had a termination, as by then I knew I would love a child regardless, but I needed to know after the shock of Ellie’s diagnosis. 

“Ellie is now 11 and has grown up into a confident young girl. She’s started going to a specialist high school, loves to sing and her dream is to appear on Britain’s Got Talent. She has never needed heart surgery, but is monitored regularly by her cardiologist.

“Now we’re on the cusp of her teen years, I know explaining everything from periods to mood swings isn’t going to be easy, but we have plenty of support and advice from the DS community.

“I worry as she becomes a teenager she’ll grow frustrated at needing me or Jason with her all the time. In the past, local authorities used to supply carers to accompany teens with DS, so they could go out on their own, but with budget cuts I don’t know if that will be available.

“It’s hard to admit, but had I known during my pregnancy that she had DS, I likely would have had a termination. But Ellie has taught me DS doesn’t define people – it’s something they have, not who they are. And it makes no difference to my love for her. I wouldn’t change her for the world.” 

Sharon Genua, 53, is a specialist teaching assistant and lives in Warmley, Gloucestershire, with her husband Ciro, 55, a carer, and their children Nino, 22, and Lia, 17.

“Today I look at my handsome son – who recently graduated from college, works as a model and football coach, has a girlfriend and plans to soon live independently – and it’s hard to believe I was once told by a paediatrician he’d never lead a meaningful life. I’d love to show that doctor how wrong he was to write Nino off, just because he has Down’s syndrome.

“I had a normal pregnancy, with neither scans nor a blood test revealing any issues. After his birth in September 1998, Nino struggled to feed, was constantly being sick and failed to gain weight. When he was five months old, he was admitted to hospital for a week and diagnosed with severe reflux. The doctors prescribed medication and we were allowed home. 

“Two weeks later, my husband Ciro and I took Nino back to hospital for what we thought was a final check-up. Then the consultant broke the news that our son had Down’s syndrome. I was in such shock I can barely remember anything else about that day. 

“Later, I was told that while Nino had been in hospital, a doctor had suspected his almond-shaped eyes and the size of the gap between his first and second toes were markers of a genetic condition. Blood had been taken as part of the investigation into his reflux, which had revealed he had DS.

“I loved Nino fiercely and after six months of being his mother, the diagnosis didn’t affect my bond with him. But I was scared he would have serious health problems or we would lose him.

“Family and friends were supportive, but I found it hard taking him to baby and toddler groups, as he was behind the other children developmentally – he didn’t walk until he was two and a half – and the other mums there just didn’t know what to say to me.

“I could write a book about the ignorant ways people have treated Nino over the years. A woman in the street referred to him as “it” and a doctor once commented: “He’s good-looking for one of those, isn’t he?” Even today, people will speak to me instead of him, assuming he can’t talk, or push past him as if he’s invisible. 

“Lia was born when Nino was five. Ciro and I didn’t know if we’d have a second child, worried we couldn’t give them enough time and love when Nino needed so much. But we wanted him to have a sibling.

“I had tests for DS because I felt it was expected of me by health professionals. I wouldn’t have had a termination and now can’t believe I risked having a CVS test, where a sample of placental tissue is taken, as it can cause miscarriage.

“Now 22, Nino has asthma and epilepsy and although he has a stutter and uses Makaton – a form of sign language – he’s sociable and confident and loves playing sport. He’s currently volunteering as a coach for people with additional needs at Bristol City FC and also doing a work placement at a bakery.

“He has a girlfriend Olivia, 28, who also has Down’s syndrome. They were friends first, but became a couple on Valentine’s Day six years ago and I’m delighted he’s experiencing the happiness of a relationship, albeit an innocent one, as companionship is what matters most to him.

“I’ve been preparing Nino for adulthood, helping him with his studies and finding work placements. He wants to move into supported housing before he’s 30 and I’m confident he’ll be able to. Most people don’t get to meet their hero, I’m so lucky to have given birth to mine.”  

Source: Read Full Article