I was 12 weeks plus 3 days pregnant when I found out about sweet Dori’s diagnosis, although a shock, for me Dori’s existence was and still is a blessing. However, that phone call I received was my first glimpse into the views the medical professionals have of Down syndrome, unfortunately those views were sad and very much outdated.
I wasn’t even given a moment to process what the doctor said to me, before being asked if I wanted to terminate. Terminate my baby? Was Down syndrome that bad? I am young, and I did not know much about Down syndrome at the time, but I immediately shut down her words with a stern ‘no’, because no matter how ‘bad’ this was I wanted my baby. The months went on and they included many lonely scans and appointments where I was constantly reminded that I could terminate at any time; every time I sternly stood my ground and refused. It wasn’t until my last scan that I questioned why they kept bringing up termination and I was simply told because my ‘baby’s life would be hard, and she would have a bad quality of life’. So, like any young mum would do I took to social media to find out how real families coped with this ‘awful’ news. But I didn’t find depressing images or people living horrific lives. Instead I was welcomed with love, joy, and just pure happiness.
Fast forward to where we are now 7 months down the line, and I can’t say that the medical experience has gotten any better with their attitude towards Dori. She’s needlessly had feeding tubes placed in because doctors assumed that’s what she needed – because all children with Down syndrome have those, right? They have spoken down about her in negative ways – the old GP told me that Dori would live a life of ‘suffering’. Then the most recent and heartbreaking conversation came from her paediatric team this week when I asked about getting Dori some physiotherapy to help her develop. I was told that they wouldn’t be offering Dori physiotherapy as she’s ‘supposed’ to be behind on milestones and I need to stop pushing my baby into achieving things at a typical rate. I was very rudely told that my baby didn’t need their help and they were too busy for her. Too busy for a baby, a 7-month-old baby who deserves their attention just as much as the other children in their care.
You see this is the attitude so many parents are facing daily. It is a constant battle to have our children seen and treated as equals by medical professionals. This needs to change, the NHS needs to be educated on up to-date information about Down syndrome. They need to be taught that this community is fantastic and beautiful if they just took the time to see our children shine.