What To Expect When You Are (Not) Expecting A Child With Cerebral Palsy

06/10/2017 07:55

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The day before our 12 week scan I remember a friend clearly saying "at least you'll know it doesn't have Down syndrome tomorrow" and my baby didn't. We 'passed' that test with flying colours, nope no down syndrome here.

But it never occurred to us that our baby might still be born with a disability.

I was 37 weeks pregnant when I noticed the baby had stopped moving. Back then (2009) midwives were advising that if your baby stopped moving it probably wasn't anything to worry about and that eating some chocolate or having a hot drink would probably wake up the baby.

So that's what I did. I ate chocolate, drank tea and didn't panic. Turns out maybe I should have.

William was born at 7.25pm that day via emergency c-section. But during the time he had stopped moving, he had suffered from a lack of oxygen which had led to severe brain damage and a condition we were later told was called Cerebral Palsy (CP).

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William was diagnosed with brain damage when he was 4 days old

Until we were given that diagnosis we'd never even heard the term and hearing it that day was terrifying.

But we aren't alone. In the UK, it is estimated that one in 400 babies have a type of cerebral palsy. Figures indicate that with the birth rate in excess of 700,000 per year there may be as many as 1,800 new cases of CP in children each year source

I wonder whether we would have been more able to cope with the diagnosis of cerebral palsy had we been aware of its existence? Would it have been easier if we'd had a small understanding of what might lay ahead for William, and for us as his parents?

Conditions which can be diagnosed prior to birth can be researched so that parents can ready themselves and be a little more prepared to deal with the consequences when their baby arrives.

But if, like us, your baby's disability is caused at the end of the pregnancy or during birth then it's likely you are not prepared for it at all, especially if you've never even heard of the condition.

I don't want to panic expectant mothers or give them even more to worry about during their pregnancy, but I do feel it is important that this condition is discussed more openly because as Robyn Cummins, World CP Day Manager explains,

"Cerebral palsy is the most common physical disability in childhood and is also one of the least understood. There are over 17 million people living with CP and 350 million family, friends and supporters who care about them."

Perhaps if I had been aware of it then I might have taken William's reduced movements more seriously? Had I been aware of this condition when I was pregnant, although it still would have been devastating to hear the diagnosis, maybe it wouldn't have been so terrifying to think about the future.

I may have known a little more about what to expect for my baby. Not knowing what lies ahead can be terrifying. All you want to know is what might happen, how you'll deal with it, and who will help you through it.

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What is cerebral palsy?

Cerebral Palsy is a complex, lifelong disability. It primarily affects movement, but people with CP may also have visual, learning, hearing, speech, epilepsy and intellectual impairments. It can be mild - a weakness in one hand - to severe - where people have little control over movements or speech and may need 24-hour assistance.

William's CP is at the severe end of the scale, GMFCS V, so his whole body is affected. He cannot sit or stand, he cannot use his hands and is non-verbal. All of this sounds terrible, and I know the very thought of your baby being as disabled as William, is terrifying.

That is why it is always important to balance the statistics, medical and physical issues with the daily reality and the positives.

William needs 24/7 care, but he loves being with people, whether they are children or 'grown-ups'. If you're (not) expecting a child with cerebral palsy you won't be expecting the feelings of relief, comfort and happiness when you see them build relationships with adults who want to help them as much as you do.

William cannot stand or sit unaided but he has support from an incredible NHS team who provide him with specialist equipment so he can sit comfortably and is able to stand up to play. If you're (not) expecting a child with cerebral palsy you won't realise how much you will come to rely on the NHS and how hard people will work to make sure your child is comfortable and able to participate in daily life.

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If you aren't expecting a child with cerebral palsy then you probably won't be expecting incredible moments like this

William cannot use words to communicate, but he can vocalise and tries really hard to express himself. If you're (not) expecting a child with cerebral palsy you won't be expecting the overwhelming joy of hearing them laugh or responding to an "I love you" with a squeal.

William faces daily challenges but despite that he is one of the happiest children you could ever meet. He smiles all day, laughs at the silliest things and loves to watch the world. If you're (not) expecting a child with cerebral palsy you won't be expecting life to be good, your child to be happy and people to want to spend time with them.

He might not be able to do things in the same way that other children his age can but that doesn't mean that he doesn't live a full and active life. He cycles a bike, swims and even horse-rides at his incredible school. In fact, the main thing that holds him back isn't even his disability, it's the world around him not being adapted to cater for it.

As a family, of course it has changed our lives. Having a child with a disability means we don't do the same things other families do. But sometimes I am actually grateful for that! I don't have to stand in the cold watching a football game on a Sunday morning and I don't have to do the school run in the rain!

Having a child with CP is difficult, I won't lie and people often assume that I would want to 'cure' William if I could. But the truth is that no, I wouldn't change him for the world. Of course, if there was a 'cure' then I would do it for him, if I thought that was what he would want, but no, not for me.

To me he is perfect just the way he is.

Today (Oct 6th) marks World Cerebral Palsy day and I hope by raising awareness of this condition, we can help prepare new parents should their child be diagnosed with Cerebral Palsy.

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