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18th Mar 2015

Lia Stokes on why her daughter’s smile is all the sweeter for arriving a little late

"Initially I was angry and sad and confused. Why my child? Why me?"

Lia Stokes

Pregnancy can be an exciting time but it can also be quite scary. I was rushed into hospital at 30 weeks after suffering a bleed. My daughter was born by emergency Caesarean just hours later. Although she came out shouting, with all limbs and appendages in the right place, everything wasn’t as rosy as I’d imagined it would be.

Hailey weighed under 2.5lbs when she was born. The first time I held her I had to double check there was actually a baby in the blanket, she was so light. She looked like a little bird with almost translucent skin and downy hair covering her miniscule body.

Initially, we were told that she was already exceeding expectations as she hadn’t needed a ventilator and despite her size, was doing quite well. However, days later my partner and I were in the ICU with her when her paediatrician called us into the nurses station to show us the results of a routine scan they had taken the previous day. There, in front of staff and other parents, he told us that our little girl had some serious complications and might not live more than a few weeks or months if we were lucky. I’ll never forget the feeling in that moment – as though the room was closing in on me, my knees buckled and I almost collapsed. I didn’t know what to do so I just cried and held my beautiful little girl.

Initially I was angry and sad and confused. Why my child? Why me? I worried about every day. What would tomorrow hold, or next week or month? But as time went on, as Hailey grew and put on weight (we were excited by every ounce) I realised I had a fighter on my hands. Seeing her defy the odds made me realise that if this tiny, little, defenceless being could battle her way from one day to the next, then I had to do the very same.

After three gruelling months in hospital Hailey eventually reached her safe weight – a whopping 5lbs, and finally we were able to take our little angel home the day before my birthday.

Hailey was diagnosed with hydrocephalus, a condition in which there is an abnormal accumulation of cerebrospinal fluid in the ventricles of the brain. She was also diagnosed with schizencephaly, a rare condition which is characterised by the malformation of the brain. In her case this has resulted in a form of epilepsy as well as motor deficits, amongst other things.

When you think about having children you only ever picture them doing all of the usual things you’d expect a child to do: smile, crawl, walk, play, go to schools, make friends. But when your child is diagnosed with any kind of special need, your vision and expectations suddenly shift. Milestones go unreached and in their place are the ones set by your child. A smile might not appear for the first year, or more but when it does it’s so much sweeter, and every smile from there on in is like a gift from them to you.

For new parents or parents-to-be, the thought of finding out your child might not be ‘normal’ (if such a thing exists), is a terrifying concept but you quickly come to realise that no child is the same, regardless of ability.

Hailey, now four, is one of the happiest and healthiest children I have ever met. She can’t walk – yet, or talk – yet, but we always know exactly what she wants, she makes sure of that. Despite her struggles early on, she has metaphorically flipped the bird to all of the doctors who told us she wouldn’t make it.

I can’t imagine my life without that little bundle of joy. She is the fulcrum of our entire family and has brought us all so much closer, teaching us to be patient, mindful and to appreciate every day we are given together.

I see some parents look at me with sadness and sympathy when we’re out and about but I just look back at them the very same way because they’ll never know the joy that a special child brings to the world.