Maariyah's story

My name is Maariyah  and I’m a Law student at Nottingham Trent University.  At just four months, my parents and doctors noticed I had frontal bossing syndrome, which is an unusual prominent forehead with a heavier brow ridge. I was then examined and had multiple x-rays which confirmed I had metopic craniosynostosis. The doctors and the surgeons then began to plan for surgical correction of this condition, because of the risks of raised intra-cranial pressure and because of the significant cosmetic differences and risk to the eyes, that would be associated with it not being treated. I was also tested to check if it was a genetic and whether it ran in my genes, but it didn’t and I was just the odd few people in the world who had metopic craniosynostosis.

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On the 13th October 2003, just a month after I turned one ,  I was admitted to have an fronto-orbital advancement for my metopic craniosynostosis at Birmingham Children’s Hospital.  I don’t remember anything since I was very young, but for my parents I’m guessing it was very daunting to see their one year old child having to undergo such a big operation.

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 During the course of the surgery, I was given two units of blood and gelofusine (a plasma volume substitute, which replaces fluids lost from circulation). I was also given many other medications such as Morphine, Codeine and Paracetamol to help with the pain. I now have 60 stitches and two bald spots where they cut to operate. After my operation, I had a few wounds that drained, so a transfusion and infusion was done.  Due to the metopic craniosynostosis, I had a squint and had to begin wearing eye patches and then slowly was eased into glasses.  I no longer have a squint, but still wear glasses. I spent roughly two weeks at Birmingham Children’s Hospital and was later discharged but had to attend monthly and yearly check-ups. 

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