This truthful story of shock, mourning and the subsequent love and pride was sent in from Caroline Playle, Mum of Seb.
It was a small, musty room where the news was delivered to us that Seb had Down’s Syndrome. Five days after
his birth, the fumbling paediatrician, ironically called Dr Downie, left the
room to allow us some time to 'take it all in'. I distinctly remember how the
room had no windows. He had us captive.
He returned
suspiciously swiftly with a handful of leaflets and I remember so vividly the
hot flush in my cheeks, the palpitations in my chest and the knots in the pit
of my stomach as I caught a glimpse of the cover photos. No way. This is not
happening to me. To us. This is for someone else.
I don’t know if it’s a mothers instinct,
but after the barbaric labour I’d endured, the absence of a cry and the fact
that Seb wasn’t given straight to me, I was waiting to be told that something
was wrong. He didn’t look quite how I’d imagined, but then most newborns look a
bit alien – don’t they? I kept staring at his fingers and counting them. They
were so fat and blue and I couldn’t quite believe there were only five on each
hand. The staff left us to it so I presumed we were out of the woods. I’m
always a worrier.
24 hours
later, after problems with feeding, a midwife told us she had concerns of a
'chromosomal abnormality' (whatever that was) and had asked for someone to come
and see us urgently.
A very long
and uncomfortable two hours later the paediatrician arrived and, with very
little eye contact, did some routine examinations. He mainly talked in riddles,
but he said something about possible heart problems and muscle tone. It didn’t
sound too serious. It certainly
sounded redeemable. The nurse took some blood from Seb’s teeny tiny hand with
what looked by comparison, like an enormous needle and organised heart and
blood pressure tests.
That
evening, all alone, I decided to read through Seb’s precious little red book.
'Sandal gap', 'slanting eyes', 'mild hypotonia', ‘concerns of chromosomal
abnormality’. Still feeling brave and looking for peace of mind, I decided to
google it……..
Down's
Syndrome.
Down's
Syndrome.
Down’s
Syndrome.
DOWN'S
SYNDROME?!!!!!
OH. MY.
GOD.
So, back to
the musty room with no windows, the confirmed results of the blood test, Dr
Downie and the pudding bowl haircuts. That was the day that someone drew a
thick, black, heavy, vertical line right through the middle of my life. The day
my heart was so heavy I could practically feel its weight in my shoe.
We gathered
our things together, including our tiny baby with his shiny new label, and
nervously knocked over our cups of water. We burst out laughing. Nothing about
it was funny though.
We walked to
the car. A stranger peered into the car seat and congratulated us. I forced a
feeble, fake smile whilst feeling absolutely gripped with fear and dizziness.
She had no idea. It should have been the happiest day of my life. It was the
worst. We drove home and I remember thinking that the streets somehow looked
different. Everything seemed calm and people were carrying on as normal.
The house
was full to bursting with messages of congratulations, presents, flowers,
balloons, cards, gorgeous baby clothes and the nursery that had been put
together with excitement just weeks before. Everything was perfect, just how I
had wanted it, except for one thing…
 |
| Caroline and Seb in the early days |
In a blur
and on a mission, we frantically threw ourselves into research mode reading
books and websites, and getting in touch with speech therapists,
physiotherapists and other experts. I would wake up and for a split second it
wasn’t real. There were tears, so many tears. Hysterical tears. Every single
time I looked at my new baby I saw Down’s Syndrome. I felt a huge depth of love
for him. He seemed exceptionally vulnerable and I felt guilty for feeling so
cheated. It was a very confusing time.
Bit by bit,
day by day, the hurt started to lift as I grieved for the baby I thought I was
having and I fell in love with our Seb. He was a baby first and foremost, not
just a syndrome. He cried, he smiled, he rolled over, he sat, he crawled. He
learnt to walk, he learnt to eat. In fact he did everything you would expect a
baby to do, just at his own pace.
Last month
was his 3rd birthday and the only aching in my heart was pride which was
literally bursting out. Every single day he makes me laugh. Every single day he
makes me mad. He is charming, witty and bright and he knows how to have a
meltdown like the rest of them. He is starting to speak, he’s learnt 100s of
makaton signs (think Mr Tumble), he’s off to mainstream nursery in September
and he’s even starting to learn to read. His favourite word is ‘cake’ and he is
obsessed with diggers. He hates having his hair washed, he loves ice cream and
he calls his brother ‘babydom’. He doesn’t have a pudding bowl haircut and his
little face is full of magic and mischief.
In truth, I
wouldn’t change a single hair on his body, let alone a chromosome. He is
honestly the best thing that has ever happened to me and he has taught me so
much in 3 short years.
96-98% of
positive screenings during pregnancy end in termination. I would never judge
anyone for taking this decision and I understand the reasons. This is exactly
why my plight is so heartfelt. Before Seb, I was ignorant too. I had never
known anyone with Down’s Syndrome. I was guilty of being in the ‘they’re so
loving’ brigade and I have a pretty good idea how this story may have ended, or
never really have started, had I known about that extra chromosome when I was
pregnant. I feel so ashamed of that. Seb has brought joy to so many people in
such a small amount of time and he contributes far more to me than I ever could
give to him. He deserves to be here. I just wish that in those initial hours,
days and months of his life I had not been so gripped with fear of the unknown
and had just realised, as I do now, that he is a child (person) with likes and
dislikes, just like anyone else. He just happens to have one extra chromosome.
