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Iceni Magazine | November 28, 2020

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Craniosynostosis Awareness Month: Becky’s Story

Craniosynostosis Awareness Month: Becky’s Story

There is no worse feeling than that of a medical professional telling you that your perfect bundle of joy isn’t perfect in the medical world. My world was shattered.

Leaving the hospital, the parting words from the neonatologist were ‘do not go home and google’. This is exactly what I did. My precious wee girl had suspected craniosynostosis. I’d never heard about it until that day and I trawled the Internet for information.

Becky’s Story

I came across a group called Cranio Ribbons. A support group for parents and people affected by cranio. I instantly felt better after speaking to some people in the group, knowing I wasn’t alone in this. The help and support were phenomenal. It’s so nice to have people to talk to who are in or have been in a same or similar position. Being able to share experiences and journeys is priceless. 

A few weeks later, we were sent for an x ray which confirmed the doctor’s suspicions and an urgent referral was sent to Birmingham Children’s Hospital. BCH is one of only four hospitals in the UK that treat the condition. 

craniosynostosis awareness

After more waiting, our appointment finally arrived. Greeted by the specialist nurse, we walked to the consultation room, where we met the whole multi-disciplinary team. Around 15 people in total. They explained to us that Craniosynostosis affects around 1 in 2500 live births, but as C had bicoronal craniosynostosis and was a girl, she was 1 in 9000. This means instead of her head growing normally, she had a flat forehead and a long thin head. I had a list of questions, but the next few hours were a blur. My girl would need surgery: an 8-hour procedure called frontal orbital advancement and remodelling to alter her skull to prevent brain damage, eye sight problems and her head growing in an abnormal shape.

We had an 8 month wait, but in April 2019, the day finally came. It was the longest day of my life with every emotion possible flying around. She spent the next 24 hours sleepy with her head in a massive bandage, an intravenous line in her neck and looking like she’d been in the boxing ring. The next day they removed her bandage and I cried. My baby’s hair was gone and replaced with a zig zag wound from ear to ear. My world was broken; I was broken, but held it together for her. She must have picked up on my anxieties as she wouldn’t let me near her; she only wanted her dad, and this broke my heart even more.

After a few days, we were allowed home. My baby was finally getting back to herself.

We have regular 6 monthly check ups and will do so until she’s in her teens. Hopefully, she will have no lasting damage or need further surgery, but time will tell. 

September is craniosynostosis awareness month and I believe it’s something that everyone needs to know about. An abnormal head shape isn’t always normal. If you are worried, then please speak to someone and push for a referral to one of the super centres. It might be nothing, but it could be something.

To find out more about the condition, check out the Great Ormond Street Hospital website: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/bicoronal-craniosynostosis


 

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