Time to See Our Children Shine

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into the views the medical professionals have of Down syndrome, unfortunately those views were sad and very much outdated.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.

national down syndrome

The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives. 

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