The day we were told our children were disabled: It was the most shattering moment of these parents’ lives
More than one in every 50 babies in the UK are born with a birth defect, according to new research, compared to the one in 80 previously thought. Yet according to the charity Scope, which provides help and advice to parents of disabled children, more than half of parents do not receive the support they need from doctors following their child’s diagnosis. So what is it like for new parents to hear their child will have a different future to the one they expected Here, four mothers tell JENNY STOCKS their stories . . .
I WAS TOLD: HE WILL RUIN YOUR LIFE
Fiona Wilson, pictured with her son Charles who was diagnosed with Down's Syndrome at birth
Fiona Wilson, 41, a former TV presenter, lives in Langford, Somerset, with her company director partner Adam Boreham, 35. They are parents to Ella-Rose, 12, Charles, nine, and 18-month-old twins William and Edward. Charles was diagnosed with Down’s syndrome at birth, cerebral palsy at six and autism at seven.
As I stared down at the purple baby boy in my arms, the words of the nurse at an earlier pregnancy scan echoed in my head, ‘You’ve more chance of winning the lottery than having a child with Down’s syndrome,’ she said. I’d just been through a quick two-hour labour and when Charles didn’t cry, my first thought was that he was stillborn. But the midwife assured me he wasn’t dead. He had Down’s syndrome. It was impossible — my nuchal scan, which checks for Down’s, had assured us months ago that I was having a healthy baby.
Adam ran out of the room, distraught, so I was left holding our baby. I didn’t feel the rush of joy I had when my daughter was born, but an odd feeling of detachment and shock. I felt like I was outside my body, looking in at someone else’s life. When our families arrived, excited to meet my new son, Adam’s father, who also has a son in his 30s with severe learning difficulties, told me to leave Charles in the hospital. ‘He’ll ruin your life,’ he warned.
But when I woke up in a panic the next morning, worried he hadn’t been fed, I realised I couldn’t leave him. The years that have followed haven’t been easy. It’s exhausting to fight for your child at every step. As his mother, I could see when he was around other children with Down’s that he was less coordinated and had more extreme behavioural problems.
But, although I suspected there was something else wrong with my son, I was always fobbed off with the fact he had ‘learning difficulties’ by doctors who didn’t want to set up yet another appointment. Because of this, his cerebral palsy (a condition of the brain and nervous system that affects the ability to move) wasn’t picked up until he was six, and his autism, seven.
It means he will probably never walk properly and we had to endure years of his difficult behaviour such as pinching other children, hiding under tables or refusing to move without understanding there was a reason for it. It’s very easy to feel angry and bitter. Adam and I split up in 2007. We had barely been leaving the house, were exhausted and didn’t have any time for ourselves. The pressure that puts on a couple is enormous.
The situation was also very hard for Ella-Rose — I would constantly feel guilty about the fact she missed out on part of her childhood. Thankfully, Adam and I were only apart for a few months. It was our shared love for Charles and Ella that kept us together.
Fiona says that since Charles (right) has been at a specialist school he’s become calmer, more mature and his speech and behaviour have improved dramatically
Luckily, our twins are bundles of pure
joy. After having Charles, having come from a large family myself, I
didn’t feel like I’d completed my family so we decided to try for more
children. After falling pregnant through IVF, I spent nine months
terrified that I would miscarry or they would be disabled so I had many
They’re healthy little boys and Charles loves them. /01/11/article-2085377-0F27DBE400000578-436_634x541.jpg” width=”634″ height=”541″ alt=”Four-year-old Leila McMurray, pictured with her parents Jo and Tom, was diagnosed with cerebral palsy” class=”blkBorder” />
Four-year-old Leila McMurray, pictured with her parents Jo and Tom, was diagnosed with cerebral palsy
Leila aged a few weeks (left) and as a toddler at her mother's wedding (right)
The first thing that hit me was terror — the future we had expected for her had disappeared in a second. What came next was a deep grief. It took me a year to mourn the life I thought my daughter would have. I’d had a difficult pregnancy — I suffered from placenta previa, a life-threatening condition where the placenta develops in the wrong place.
We were warned there were risks to myself and the baby — which was terrifying — so when, in August 2007, I finally held my flawless-looking girl in my arms and we were both OK, I was ecstatic. However, unbeknown to us, Leila had probably been deprived of oxygen in the womb, which doctors think is what’s most likely to have caused her disability.
Up until the age of one, she seemed to be developing normally. It was then I noticed her feet were slightly malformed and she didn’t crawl like other babies. Perhaps naively, I assumed it was something we’d be able to fix. Foot, knee and hip specialists couldn’t tell us what was wrong, so Leila finally saw a neurologist to check her brain.There was something wrong. Hearing the words ‘brain damage’ made the future feel so uncertain and full of fear. In a way, ignorance had been bliss.
I still feel choked up when I see
children her age running, dancing and skipping — I hope Leila will be
able to do the same one day
The doctors hardly told us anything and we felt very isolated. We wanted to ask questions, but we didn’t know what to ask. I was also looking after my two older sons and my six-month-old baby. Normal life was still whizzing around
us, and we had to try to keep up. The world doesn’t stop when you find
out your child is disabled. Luckily, Leila’s physiotherapist helped us
get the equipment we needed, and Scope provided us with information and
We got bars for our home to help Leila stand up and found the right shoes to keep her on her feet. She still struggles to walk independently and often loses her balance and falls, but she has started a mainstream school and is a sociable little girl in every other way, with a gorgeous crop of curly red hair. Other than her problems with movement, she is a perfectly normal, intelligent little girl. I still feel choked up when I see children her age running, dancing and skipping — I hope Leila will be able to do the same one day.
The idea that anything’s blocked to her breaks my heart and I cried when I found a company that would give her horseriding lessons. Nowadays, she swims and rides an adapted bike with a bit of help. I don’t think there’s anything she shouldn’t be able to do.
HAD WE CONDEMNED HER TO A SHORT LIFE
Mercy Bastajic, 36, and her husband Milorad, 29, live in Corby, Northamptonshire, with their two sons Dylan, aged eight, Filip, five, and two-year-old Alicia. Aged three weeks, Alicia was diagnosed with cystic fibrosis, a congenital condition that affects the lungs, pancreas and digestive system.
Out of a 45-minute conversation with our hospital consultant, I heard just three words: ‘life-threatening condition’. The other words washed over me as I sat in a trance, cradling my three-week old baby daughter. All I could see were visions of Alicia withering and shrinking until she was gone.
It was two days before my husband was able to tell me exactly what had been said that day at Kettering General Hospital in September 2009.
Mercy and Milorad Bastajic with their daughter Alicia who was diagnosed with cystic fibrosis aged three weeks
Alicia spent her first year in and out of hospital six or seven times with respiratory infections
Until then, I had just been staring at my daughter and crying, unable to speak to anyone. We were told Alicia wasn’t going to die — not yet. But, understandably, we were terrified of what lay ahead. Unknown to us, we were both carriers of a defective gene that meant our treasured daughter’s internal organs would become clogged with sticky mucus, making it hard for her to breathe and digest food.
Unwittingly, we had condemned Alicia to a short, difficult life of hospitals, drugs, fragile health and infections. It was impossible not to blame ourselves. Why were we carriers Why couldn’t I have just had the disease instead of her I’d immediately known from birth there was something wrong with Alicia. She was constantly hungry but milk went straight through her; I was getting through 24 nappies a day, and despite breastfeeding around the clock, weight was falling off her. I was horrified to see her protruding ribs and stick-thin limbs.
It was impossible not to blame ourselves. Why were we carriers Why couldn’t I have just had the disease instead of her
She was diagnosed when the results of her newborn blood test came back three weeks later. Alicia was immediately prescribed enzyme capsules to help her digest milk, but she still spent her first year in and out of hospital six or seven times with respiratory infections — we were even there last Christmas Eve. We were also taught how to do the special chest massages she will have to endure for an hour a day, for the rest of her life, to keep her lungs clear.
Alicia has to take five different drugs a day including an antibiotic to help her immune system, a cocktail of seven vitamins she lacks, and pills to control her stomach acids and help the enzymes work better. It’s a constant battle just to get enough calories into her — I have to beg her to eat more chocolate. Financially, it’s a struggle. I had just finished training to be a childminder when Alicia was diagnosed, but had to abandon those plans as I couldn’t risk other children bringing infections into the house, and Milorad has had to cut his hours to help look after the boys.
We still worry about Alicia, but I do see a future for her. Twenty years ago, we couldn’t have hoped for her to live beyond eight, but now I am in touch with sufferers of the same condition from all over the world who are in their 50s, having raised families of their own. Alicia might not lead the sort of life we’d imagined when we first held her in our arms. But she’s alive, and for that I am grateful every day.
Scope is hoping raise 250,000 to provide information and advice to parents at the critical moment of diagnosis. To donate visit scope.org.uk/dakotas-story
Additional reporting by Julia Lawrence