When I’m tired, I find that I blog. Perhaps as a way of trying to rationalise the sporadic thoughts that bounce round my head when sleep deprivation peaks.
This time it’s not Evie’s sleep issues that have deprived me…moreover her little sister with her uncontrollably high temperatures, vomiting and wheezing. Asthma stinks.
My mum used to call me a baby elephant…I stomped across the floor, crashing into things. I still do to be honest. Elephants in the room…
It’s amazing what little things you forget and what can trigger memories.
I’ve just received an email asking for specific details of our birth experience with Evie…it’s the dead of night and suddenly I’m back there, reliving her birth. No sugar coating, no glossiness. No trying to protect the amazing NHS staff (who are truly amazing but on this occasion didn’t do what they should have).
I have forgotten so much of what happened then. When I’ve talked about Evie’s birth before, I’ve brushed aside or not alluded to some of the things that happened. I haven’t wanted to consider fully what could have been done better…because that would mean facing my own failings and no one likes doing that.
Evie was born on her due date. A text book pregnancy. I was excited for her birth, we were as prepared as we could ever be. Ha!! More fool us. The thing that I’ve learnt most in this life since her birth, is that you can never be prepared for what life throws at you. For a control freak such as I, that’s a bloody hard lesson to learn.
I’ve said before that my labour with Evie was relatively uncomplicated. In truth the kiwi-ventouse delivery stung more than a little and a third degree tear meant a couple of hours in theatre immediately after her birth. So perhaps not the most straightforward of deliveries, but definitely not the worst.
What happened was that Evie got stuck. She couldn’t help herself down the birth canal…a doctor later told me (only about 12 months later) that this was probably due to her flexibility and hypotonia.
When she was born her head was swollen from the ventouse. Her neck was thickened. I had never seen anything as beautiful as she. She was perfect in every way…true love at first sight.
My husband had noted her swollen, thickened neck and mentioned it to me. In the haze of child birth and the rush of love for this little one, I could see nothing more than a touch of swelling from her delivery. I cooed over her perfectly manicured fingers and toes, her TinTin-esque tuft of hair. I genuinely have never been as happy as I was in that moment.
I was then rushed down to theatre for emergency repairs
I had to leave Evie with her Daddy and my Mum. They got to enjoy those first couple of hours with her.
When I was in theatre, I had a particularly affable anaesthetist who went out of his way to entertain me. In hindsight I know now that they all suspected that Evie had Down’s syndrome. A midwife present at her birth, told me days later that she knew as soon as she saw her. I realise that the staff were patching me up physically and emotionally. I’ll forever be grateful to that lovely man who entertained me through one of the least glamorous moments of my life.
At this point we had no idea that Evie had Down’s syndrome. She was born in the early afternoon on a late summer’s day. It was hot. I was desperate to go home and to start our lives as a family but knew I had to stay in overnight following my operation.
That night Rob went home and I remember being terrified that I was left in charge of this beautiful baby. I had no understanding of babies despite my NCT classes. I’d never been around babies or even children for that matter. I remember trying to breastfeed her with the “help” of a midwife. By this time Evie was several hours old. I was man handled. No guidance…no dignity or care. All I can recall is being told that she had a good suckle and that was it. I was told to try again in the morning.
Then around 10pm things went a bit odd. The curtains were hurriedly drawn around me and not reopened…Evie had a dusky episode. She in essence went cold and blue. They rushed and brought a heated pad, and extra blankets…but nothing else was said. No one explained why this had happened. Yet they all must have known or suspected.
At the time I thought it was perfectly normal. I knew no different. I just saw my beautiful baby. A haze of ignorance…and love.
The following morning I got myself up and dressed. I wanted to take Evie home. Rob arrived and we sat waiting to be told we could go. A doctor arrived, he began to minutely examine Evie, curtains still drawn.
He looked at her neck, her hands, her ears, toes and eyes…
We looked at each other uncomprehending and began to fear what was happening. There was no chat that I can remember. No explanations, just silence.
We were then ushered to a private room. Rob was beginning to panic, I went straight into denial…”everything is OK” I insisted. The doctor then began to show us what he suspected and why.
And just like that the world stopped turning.
How can two words have such immediately negative connotations?
The doctor explained the issues…potential heart and bowel conditions, eyesight problems, learning difficulties…no good things…no reassurance.
I knew nothing about DS then. Quite frankly I was totally ignorant about the condition. I wondered if there was a cure. I panicked. I feared.
We followed as our beautiful baby had awful invasive tests…probed…scanned. She was surrounded by tiny premature babies yet she was a bouncing 8lb 1oz. We cried as she screamed.
Tests over in a blur of fear, we were given a private room all of our own. We could sit without curtains and be hidden. Rob could stay all day. No visiting times for us.
We had been told that if I stayed in hospital with Evie then they could rush the testing through. They could confirm what they suspected more quickly. There was no medical reason for us to remain there except for the results. I agreed to stay for that reason and that reason alone. We were desperate to go home and to be able to talk, to learn our new path and yes, to grieve for that imagined child.
The tests had discovered that Evie had a small hole in the heart. Not uncommon with any child, it would be likely to heal in time by itself and indeed it did.
For days we sat in that room…hidden, avoided, like a dirty secret.
Everyone that came in, every professional, didn’t directly discuss Evie’s condition. We were given no information…no leaflets, no internet access, not even a pen and paper. These were the days when we couldn’t access the internet from our phone. We definitely didn’t have wifi or iPhones.
We were lost. We had asked for information but were told to wait until Evie’s diagnosis was confirmed. Told not to worry until then.
Imagine sitting in a private room. You can hear families all around you. You’re left alone by doctors; the midwives simply want to check your stitches and that feeding was ok. No one wants to talk about the baby elephant in the room. No one wanted to be the one to have that talk with us…to show us the detail. No one reassured us.
We were desperate for information. We were terrified but needed to face the future. Our future and we needed to help our child.
Imagine feeling that your life is on hold. We lied to family and friends as we had been made to feel that we don’t tell anyone unless Evie’s diagnosis was confirmed. I begged my parents to bring baby photos of me to the hospital but didn’t tell them why. It must have been an odd request but they did it regardless. We told them what the medics thought and they supported us.
All I could see was my mini me. She still is my mini me.
So we clung to our beautiful child. One thing that we knew above anything else was that our baby was the centre of our world. She was wanted. She was loved.
My parents were a rock. They brought us leaflets, they took time to access information for us when the hospital failed to do so. We weren’t ready to read it in front of anyone but we did in our own time.
Our treatment, the ushering into a private room, the abandonment…made it feel as though Evie was a dirty secret. It’s not that they rejected her…or even us. It was the simple ignoring of a major issue. We needed to know. Information is power after all.
Evie’s Dad actually ran along a corridor, chasing a doctor to get her diagnosis confirmed. If he hadn’t have done that, I’m not sure how long we would have been left there…brooding. We were then free to go…that was that. Again no information…only a list of appointments.
We felt that Down’s syndrome was something to be ashamed of.
When nothing could be further from the truth.
Yet because of that start, we feared people’s reactions. We adored Evie yet felt that we had to protect her from society’s negative reactions to her.
That took a long time to deal with. That conduct as well intentioned as I’m sure it was, hurt. We were damaged.
I see lots of blog posts about what not to say.
In this instance I suppose the most important thing for us was don’t ignore the diagnosis. Address it. When people talk about conditions it makes it easier.
Yes, never say sorry. Never say “you’re so strong” and never say “I couldn’t do it” because you could, you would…this is your child, your life and there is nothing that you wouldn’t do for her.
Oh and please never say “special children are sent to special parents” as it’s simply not true. We aren’t picked out. It’s the luck of the draw and we are truly lucky. Every night as the girls say their prayers, we remember what lucky, truly fortunate people we are.
An extra chromosome is nothing to be ashamed of.
It is no one’s fault.
It’s not a bad thing so how can it be a fault?
Yes there are differences…but then we are all different. And blessed for those differences.
Baby elephants…like mother, like daughter.