"Assumptions and stereotypes were wrongly made"

I had my daughter at Paisley Royal Alexandra Hospital. She was born 4 weeks early and had a postnatal diagnosis of Down's syndrome. She needed oxygen as she was a bit early but other than that was a happy and healthy baby. When the first 2 doctors told us she had Down's Syndrome, the word sorry was used repeatedly and we were given a list of things she wouldn’t do and medical conditions she might have. (She has none and no-one tries to predict the future of ‘typical’ babies at a few hours/days old so why is this acceptable for babies with Down's Syndrome? We were told she wouldn’t live independently or go to mainstream school, which is just wrong. 80% of children with Down's Syndrome do, in fact, go to mainstream school.) Assumptions and stereotypes were wrongly made about her based on her having Down's Syndrome.

A nurse told me not to worry, as she might just have a squashed face because she was a quick delivery. Our daughter was in NICU for 4 weeks during COVID, the worst 4 weeks of our life. I was absolutely terrified of her having Down's Syndrome. If doctors were so sorry about it, it must be bad. We constantly saw different doctors and nurses, there was no continuity of care.

Down's Syndrome is nothing to be sorry about. It is not a disorder, disease or illness. It is a genetic difference. Looking back, I genuinely don’t understand why Down's Syndrome is viewed so negatively. My daughter is happy, healthy and thriving. We have met many other families in the same position as us.

I would strongly suggest the maternity and NICU staff are given up to date training and information surrounding lived experiences of Down's Syndrome, because the doom and gloom of what they told us is the opposite of what our life is like.