The doctor said he was "sorry" my twins had Down's syndrome - but I wouldn't swap them for the world
21 March 2016
Abigail and Isobel Parry started at a mainstream school in September
Every child is special, and Jodi and Matt Parry know that even better than most parents.
They are mum and dad to identical twin girls, Abigail and Isobel, who also have Down’s syndrome – the chances of which are two MILLION to one.
Jodi and Matt are open in admitting that when they first heard their children had been diagnosed with Down’s syndrome – three weeks after their premature birth in June 2011 – they felt it was a 'life sentence'.
The first words the doctor said to them when they received the news were: "I’m sorry"
The day our twin girls were diagnosed with Down’s syndrome it felt like a life sentence.
That day, I didn’t feel like a mother. I just felt lost and confused. I had bleak visions of the future. I thought we’d be carers until we dropped dead.
Lack of support
Sadly, many families with a child who has a learning disability struggle to get the right support at the right time. This reinforces the negative stereotypes and fears that many people have about people with disabilities.
The doctor took us off the ward, into a bare, clinical side room with three chairs and then uttered the words that have remained stamped on my memory: ‘I’m sorry.’
Everything else he said that day is a blur, that ‘I’m sorry’, the first words that came out of his mouth, is the thing that stayed with us.
We had so many questions. Would the girls walk? Would they talk? We knew nothing about Down’s syndrome and left the hospital with no answers, no information, just fear and dread.
But now, nearly five years later, their family is flourishing. And Jodi and Matt say they want to spread positive awareness and provide support to other parents who may be feeling lost and confused.
Jodi and Matt with their beautiful daughters
Myths and misconceptions
So they are devoting their lives to busting the myths and misconceptions that surround Down’s syndrome.
Abigail and Isobel started at a mainstream primary school last September, and their mum is speaking out again this World Down's Syndrome Day to say that they have been a gift to her life. Jodi is determined to be there for other parents who might have just received a diagnosis.
92% of children diagnosed with Down's syndrome before birth are aborted. Under the 1967 Abortion Act, abortion is legal up to birth for disabilities including spina bifida, cleft palate and club foot, as well as Down's syndrome.
It is also noteworthy that many of the early proponents of legal abortion were firm believers in eugenics - such as Marie Stopes, in whose honour the abortion provider Marie Stopes International is named.
In her 1920 book Radiant Motherhood Stopes condemned a society that "allows the diseased, the racially negligent, the thriftless, the careless, the feeble-minded, the very lowest and worst members of the community, to produce innumerable tens of thousands of stunted, warped, and inferior infants."
She demanded the "sterilisation of those totally unfit for parenthood be made an immediate possibility, indeed made compulsory."
Two million to one
In the early days, when the twins were diagnosed, Matt and Jodi were terrified that their family would never be the same again. For Jodi, this destroyed her dreams of being a mum and in that instant, all she felt was grief for the children she thought she would have.
Having twins with Down’s syndrome is very rare - about two million to one. But having a child with any learning disability is much more common.
If there had been a bit more understanding and listening to us as parents, then perhaps our distress would have been heard and someone could have directed us to information that told us what to expect for our daughters’ futures, not just scientific jargon about extra chromosomes!
To this day, I would love to ask that doctor, ‘what are you sorry for?’ There’s nothing to be sorry about, it’s just a different journey.
The family live in Lancashire and have three children – older brother Finlay, seven, and twins Abigail and Isobel, four.