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downs syndrome baby

[Shared by My Life, My Son, My Way]

I was 15, living with my Dad in Cambridgeshire, an unruly teenager and very, well so I thought, independent. I hated my life, my parents, school… no surprise there.

I met a boy, who my dad obviously didn’t like. I went a little further off the rails and a few weeks after my 16th birthday I found out I was three months pregnant. I had been very strict with myself and took my pill religiously (shockingly), so to me I just couldn’t be pregnant… denial didn’t help matters. I held back from telling my family out of shame and pure fear, and by the time they’d found out I was six months pregnant.

I moved to Yorkshire where I’d grown up, with his Dad in tow, to be near my Mum. I had Rhys Lee Baillie, 9lb, at Scarborough Hospital, on 28/09/02 at 5.15am and after 21 hours in labour.

Rhys was born with the biggest hamster cheeks I had ever seen, just swelling from labour but it was quite cute. I had had Cabbage Patch dolls as a child and was insistent that he looked like one (in a nice way). I was in love.

But the doctors kept looking at him and taking him away for tests ‘on his cheeks’, I was quite happy for him to be tested as long as he was okay. I started getting a little skeptical of the ‘doing tests on his cheeks’ line as I started glancing around the room at the other newborn babies… they were all scrawny and skinny looking but they weren’t getting any attention from the doctors, I thought it was a bit odd that Rhys was so important.

The paediatrician came in to the ward to see me when my mum was still there… My heart sank as he said “I need to see you both in the morning, your mum can be there if you want her to be”. 

When he left I asked my mum ‘Is there something wrong with him?‘ and she replied “Would it matter if there was?”  I answered no, and she left it at that but it didn’t stop me worrying all night.

So just over 24 hours after Rhys was born, both me and his dad were met by my mum at the paediatric ward. I was petrified. I was almost prepared for what the doctor was going to say, but not, if you understand what I mean.

He started saying all sorts of facts and figures, which I don’t remember but I do know it felt like he was talking for hours… He used the word ‘Special’ over and over and over… until the midwife, who was also in the room, told him to get on with it (which was quite funny). He eventually said the words Down Syndrome…

I was already crying because of the tension in the room but I just stared blankly at him and carried on crying. The doctor said, “There is always the option of adoption” and I screamed at him ‘No way, how dare you?”

I now know he had to say it as part of his job but at the time I was fuming at the thought of giving up my tiny, helpless baby.

My mum knew what was coming. She had spotted the signs of Downs herself and pointed them out to the midwives on the ward, in a matter of minutes after Rhys was born. She had held him for the first time and whilst looking at his tiny little hands had noticed his ‘single crease’ which is one of the key signs of Downs. If you cup your hands and look at your palm you will notice you have two creases with a gap in the middle – people with Downs Syndrome often only have one, with no gap.

I didn’t want to leave the hospital from fear of failure but I also just wanted to escape as I was bored of my bed. I was so confused but because I am the most stubborn person on earth I pretended all was fine… It definitely wasn’t but I knew I just had to get on with it.

So we were home…. And I have no recollection of anything that happened or do I remember anything about everyday life.

I remember there were arguments and that Rhys was a happy and quiet baby. I remember the Genetic specialist coming out and doing blood tests on all of us including my mum. I remember the results and the fact that Rhys’ downs was Translocational Down Syndrome a genetic form stemming from MY father’s side of the family.

I remember the lady telling me that in the future I had a 1 in 5 chance of having another Downs baby, which is stupidly high for my age. I remember we moved house a lot… and I remember the friends I made along the way, Friends I still hold responsible for me being where I am today… but that’s about it.

I have what the doctor says is a mix between post-traumatic stress, post-natal depression and my young age and has left me with little memories of the 1st year of his life and little from the 2nd,3rd and 4th too.

This is one of the most stressful things for a mother, not to remember the firsts of your baby’s life… but the brain has held these memories back for a good reason I believe and with help from my hynotherapist I will get a few more memories back and when I do you’ll be the first to know!

[This post has been edited. You can read the full version here]



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