When my son Tom was a day old and a paediatrician expressed concern that he may have Down syndrome, I was absolutely devastated. I felt my world fall apart and the bond of unconditional maternal love I had felt for my newborn was severed.
At the 20-week scan, the sonographer had advised that the baby may have talipes which could be indicative of a ‘chromosomal disorder’ such as Down syndrome. It was a Friday afternoon and the screening midwife had automatically booked me in for an amnio the following week. However, after previously suffering four miscarriages, I cancelled the amnio—the best decision I've ever made. Had we known, we may well have decided to terminate. I know now we'd have done so out of abject fear of the unknown, genuine ignorance and the expectation from many medical professionals and society that terminating was the best thing to do.
So, when Tom was just a day old, I found myself struggling to accept and love him. I discovered I was not quite the forward-thinking, easy-going, liberal, inclusive person I'd considered myself to be. I came to realise how outdated my views were, prejudiced by a fear of stigma because I'd been influenced by the negativity that permeates language, attitudes and information around Down syndrome.
It took me months to be able to see beyond Tom having Down syndrome, and to fall back in love with him. I was terrified of the future as I felt I had no understanding of it. When we have children, we expect them to live a life akin to our own, to follow in our footsteps. But I'd had no experience of someone with a disability, and I felt overwhelmed by the stigma that exists around those with a learning disability. I yearned to understand what our lives would be like but all I could find were outdated images and reams of medical information.
What I have come to realise is that a child with Down syndrome is as influenced by his family, experiences and environment as a child without Down syndrome. None of us know the future for any of our children, a very small percentage will become brain surgeons or astronauts, the majority will lead ordinary lives and there are some people who will face various challenges. People with Down syndrome are no different—some will excel, some will be like Tom and lead full and rewarding lives, while others encounter other challenges. As with all children, those born into caring families will be loved; families accept and adjust as they do with any family member who may need some extra support, time or effort and this, in my opinion, is what parenting is about.
Yet, all too often I hear from new and expectant parents that they've been told their baby with Down syndrome will not be able to walk or talk, or go to mainstream school, will never be independent and will be a burden to their other children. This annoys me enormously. No one told me when I was pregnant with Emily that there is a 10%+ chance of her having autism, a 1 in 4 chance of mental illness, or a 1 in 3 chance of cancer and dementia. When she was a newborn, there was no mention of the childhood suicide endemic and a high incidence of children self-harming. We must be honest and accurate when speaking with parents and not fear monger.
Tom is now 15 and thriving in our local secondary school. He loves football – he and my husband have season tickets at West Bromwich Albion – and he enjoys snorkelling, Cross Fit and playing golf. When he's older he wants to get a dog, have a flat, get married and work. He also wants to ride a motorbike, and grow a beard and man bun. Not so different from many other 15-year-old boys. But Tom has a learning disability and I know that because of his different genetic makeup, many medical professionals consider Tom's life inferior to mine or yours.
It concerns me that the medical approach to cure and fix often overrides the social model to accept and include. And in the antenatal screening arena, I believe this results in such high termination rates. In their 2013 annual report, the National Down Syndrome Cytogenetic Register for England and Wales found that 92% of women terminate the pregnancy following the prenatal diagnosis of Down syndrome (Morris and Springett, 2014). I know I could have been one of those women and that terrifies me. How many women are making life/death decisions without a contemporary, accurate understanding of life with Down syndrome today? How many are being influenced and pressured to terminate by language and attitudes expressed by medical professionals?
In 2018, I conducted a survey to establish the facts. Having run a local support group called The Ups of Downs since 2006, and through social media being in contact with thousands of other families, I was aware of the discrimination experienced by many of our expectant and new parents.
Launched in October 2019 at the Houses of Parliament, the report ‘Sharing the news: the maternity experience of parents of a baby with Down syndrome’, corroborates my concerns. There is an assumption by medical professionals that an expectant woman will terminate when discovering the baby has Down syndrome, with 69% of women being offered a termination when given the news that their baby has Down syndrome (Positive About Down Syndrome [PADS], 2019). Furthermore, women's decisions are routinely being undermined and disregarded—of these expectant women, after advising they were continuing the pregnancy, 46% were asked again if they wished to terminate (PADS, 2019).
Women clearly deserve better and I strongly believe we need a cultural change; for medical professionals to understand and accept that having a genetic difference such as Down syndrome does not make someone's life less worth living. I realise now that there's nothing wrong with Tom, but rather it was my attitude that was desperately erroneous. I ask you to consider how up to date your knowledge is about life with Down syndrome? Do you still view it as a life-limiting condition, that children with Down syndrome are a burden to their families and potentially society? Or do you see an individual who has a life worth living?
Because the reality is that life for people with Down syndrome in the 21st century is most certainly worth living. Down syndrome is no longer life limiting. People with Down syndrome enjoy a mainstream education, are valued members of their communities and loved by family members. Like Tom, the vast majority lead full and rewarding lives. Aspirations, opportunities and expectations based on research and evidence have never been so high. In the US, a survey of 3 150 families with a member with Down syndrome proved how content families are (Skotko, 2011). Yet too many medical professionals retain and espouse outdated, prejudiced and discriminatory views. This comes in stark contrast to these findings (Skotko, 2011):
How parents are given the news that their baby has Down syndrome can have a significant impact on the way they feel about their pregnancy and newborn. If the information is delivered in a negative way, this can affect a positive experience in parents' lives.
| Attitude |
|---|
| Congratulate and be positive: celebrate the arrival of this baby as you would any other and offer your congratulations |
| Be confident in the knowledge there's nothing to be sorry about |
| Information |
| Give parents time to digest the news: assuming there are no immediate health concerns, please allow parents time to bond, to relax, and enjoy getting to know their precious new arrival |
| Be patient: often many medical professionals feel compelled to overwhelm expectant/new parents with every potential ailment/medical condition a baby with Down syndrome may have throughout their life |
| Take their lead: if parents are asking for information, establish what they want to know; please refer them to sources such as Positive About Down Syndrome and local support groups who can provide them with accurate, relevant, contemporary and useful information |
| Be practical and considerate: wait for the dad to be present. Of the 687 new mums being advised it looks like baby has Down syndrome, 20% were told without the dad there (PADS, 2019). Consider the news may come as a shock and respect parents' responses—don't say you're sorry |
| Language |
| Always use person-first language: don't label someone by their condition. A baby has Down syndrome; they're not a Down's baby |
| Don't generalise: we all like to consider our child as unique, the one who is going to change the world for the better. Having medics refer to a newborn as, ‘They're always happy, they tend to be floppy, they struggle to latch’ is not endearing. Please focus on the individuality of each baby |
| Be respectful: don't ask new parents about what screening tests they had. So many new parents recount how medical professionals asked, ‘Didn't you know?’ with the inference being that had you known, you'd have terminated. Have respect for each parent's choice |
Changing the narrative
Emma Ayers, whose son Albie was born earlier this year, shares her recent experience. ‘I feel that what should have been our happy newborn experience was completely tainted by the way we were told of Albie's diagnosis. There was no feeling of “this is completely doable, and we are here to make sure Albie gets all the support he needs—all you need to do is be parents”. It was all very solemn and clinical. Even the nurses who were lovely and well-meaning put us in our own room to stop people ‘gawking’. The language and attitude completely shapes the way your baby comes into the world and it's something no parent ever forgets.
I feel that if the doctor had come in and congratulated us on our beautiful baby and explained that Albie has a completely naturally occurring genetic condition, that while it may seem scary, it was completely doable, we could then have enjoyed our new baby, and let the future unfold as it does for any other parents. Instead, he didn't congratulate us, but rather pulled up a chair as if he were giving us the news that Albie had a terminal illness. As a result, it made me so embarrassed to tell friends and family I didn't even announce Albie's birth, which was something I'd always been so excited to do. I know it wasn't malice, it was just pure ignorance. And as we didn't know any better, at the time it was just so damaging, coming from people you trust are giving you the right information.’
‘The language and attitude completely shapes the way your baby comes into the world’
In 2017, I created PADS, a website full of stories and photographs compiled by young people with Down syndrome and parents to show other parents and parents-to-be the reality of living with Down syndrome in modern Britain. Over the past year, we've distributed 125 000 postcards across the UK and are happy to supply to your maternity unit to ensure new and expectant parents understand what it's really like to have a family member with Down syndrome.
At PADS, we are extremely keen to collaborate with relevant national bodies and maternity units to address our issues and have created a Down syndrome charter to raise standards of care for those expecting a baby with Down syndrome. We are presently conducting a pilot scheme with Royal Cornwall, University Hospitals Coventry and Warwickshire, and Hull maternity units, all aiming for accreditation in spring 2020. We will then look to implement the charter on a national scale.