Sue gave birth to Claire in a totally different generation to now. 31 years ago, children with Down Syndrome were sent to mental institutions and were shunned by society. Thankfully, this is now mostly an outdated view of Down Syndrome and it is a lot more accepted.
I’m so grateful that Saajan was born in this day and age as I can’t imagine coping with the dark thoughts and feeling that I did when we received the diagnosis – similar to those that Sue describes below, along with dealing with such a negative response – it’s enough to tip anyone over the edge.
Sue has does amazingly raising Claire to be a strong woman despite raising her during a time where there was so much stigma attached to having a child with Down Syndrome – Claire is so proud of who she is and that I really do believe is a credit to her upbringing.
Years on, although things are very different today, and the support and early intervention available is amazing, the raw emotions you often feel when you are given a diagnosis are still very much the same.
Sue shares her story below …
I’d had a c section, and they’d taken Claire and put her in a room – they explained it was too cold in the room I was in. I had no idea what was gong to unfold.
I’d had a brilliant pregnancy but just before she was born, I had reduced movement and it appeared she wasn’t feeding off the placenta well. On new years eve, I was scanned for a heartbeat, I had a caesarean two days later and I suspect they knew something wasn’t right.
I’d asked to see the baby (the nurse hadn’t realised that they weren’t supposed to allow me to just yet) – as soon as I saw Claire, I knew something was wrong as previous to this I had known about Down syndrome as my sister’s friend had had a baby with Down syndrome – her baby had had a deep impact on me as the baby passed at 5-6 months from complications.
As Claire’s dad was about to leave the hospital, I heard a nurse say “Mr Dutton, the doctor wants a word with you”, I was wracked with fear, what could be going on? My baby was 8 pound 8, I’d had a brilliant pregnancy. After Mr Dutton came back in they wanted to talk to both of us. Everybody was pushed out of the visiting area. Dr Hill, a very old doctor, then drew the curtains around us and I said “she’s disabled isn’t she” I went hysterical it was ridiculous when I look back I said “I can’t do this”. The doctor said to me these are very loving children and I said but my son is loving?
I took Claire’s diagnosis really bad.
My dad was my rock – he was absolutely fine about the diagnosis. He was always there for any of us but he was brilliant from when he first came to see Claire.
My mum on the other hand kept putting her make up on to mask her feelings – she could not take it. “Mongrel” kept popping up in her head – this is how children with Down syndrome were viewed in those days. My mum couldn’t see anything wrong with Claire which was denial.
I was also told that Claire’s heart was enlarged and that she could have heart failure at any point. I went into self-preservation when I found out her heart was enlarged they told me she might not ever walk or talk. I was in hospital for 10 day’s which in those days was odd as you were in and out.
The hospital that Claire was born at was next to Marston Green hospital which was known as ‘the nut house’ where anybody that had a disability was sent. Anyone with mental health issues were put in there. That stuck in my mind – I did not want my baby to be there.
We were my dad’s girls – we were his life – my sisters and my mum. I wanted the same for Claire -I would not allow her to be mollycoddled, I wouldn’t let her be babied, everything was black and white. I had to learn myself I couldn’t allow myself to have a grey area it took me to two and half years until I realised I couldn’t be without her.
Before her second birthday she had heart surgery where I knew it was life or death, heart surgery on the Thursday she was coming home on the Tuesday. Back then, this was pioneering surgery, she started getting abscess after the surgery – it was her body rejecting the foreign object. Very quickly I took her into hospital where they cleaned it all out and sent her out.
She still was not right after but the doctor refused to come out on the Sunday night – I could tell something was wrong she had a temp of 103. I stripped her down gave her calpol and the doctor said she had a chest infection. I took both my kids on the bus and travelled miles to pick up to the prescription. I was then told to take her to hospital. Once at the hospital the doctor looked at Claire then he went away.
They eventually found that she was allergic to the dressing that they had covered her wounds in. The next thing I knew, she had an infection which could get in to her blood.
I explained I needed to call my dad to take my son. By the time I got back from making a call to my dad they whisked Claire away there was a group of doctors waiting for her. I was crying my heart out, I thought she was going to die. She bounced back quickly. If she hadn’t of had her heart surgery she would have died before her third birthday.
Life is harder as her dad passed last year so I have no respite as Claire now has a lot of anxiety as a result of her dad’s death. She has become fearful of leaving me.
I am so proud of Claire and the wonderful caring lady she has become. She is so supportive of those with learning disabilities, she is willing to help anyone. Now considering this is the baby that I was told would not talk or walk, I’m so proud. I also love the relationship that Claire shares with her brother Michael – it is so strong! There is no disability between them they treat each other like brother and sister they play each other up terribly.
For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.
