A mother who gave birth to identical twins with Down’s syndrome has responded to a doctor who told her “I’m sorry” when the girls were born.
Jodi Parry, from Lancashire, recounted being was taken to “a bare, clinical side room with three chairs” and being told “I’m sorry” after giving birth to the girls.
Writing in a blog for Mencap, a charity that works with people with learning disabilities, Mrs Parry describes the initial fear that she and her husband, Matt Parry, felt when the diagnosis was first made.
“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," she said.
Four years later, Mrs Parry says she no longer lives in fear, and that she and her children – the twins (whom she does not name) and her seven year old son, Finlay – live a full and happy life.
Her post, entitled 'To the doctor who told us, ‘I’m sorry’', explains why having children with Down’s syndrome is not a “life sentence”, just a different journey through parenthood.
She writes: “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. Our girls bring us so much joy.”
Mrs Parry also discusses the root cause of the fear that she and her husband, along with many other families, felt when their child is diagnosed with a learning disability.
Lack of information and support at the very start, says Mrs Parry, contributed to the fear and worry that she and her husband first experienced when their girls were diagnosed.
She said parents whose children are born with learning disabilities are often completely unprepared, and know nothing about their child’s condition.
Other families that we meet, and families that contact Mencap, often talk about the negative experience of their child being diagnosed.” Mrs Parry writes in her blog post.
“Even though the first years of a child’s life are so important to their development, many families with a child who has a learning disability struggle to get the right support at the right time.
“The doctors are phenomenal at what they do, but we found the hospital environment very clinical.
“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!”
She said the girls have started to attend mainstream school, and are happy and healthy.
Mrs Parry and her husband have set up their own charity, Twincess, that aims to tell the world their story and to “celebrate Down’s syndrome”.
New parents whose child has been diagnosed with a learning disability can call Mencap on 0808 808 111 for advice and support.