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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.

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.

 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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Secretary

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Fast forward to a few years later, I did get headaches growing up, but thankfully it was not related to my metopic craniosynostosis. As mentioned earlier, I have two large bald spots, so I was always conscious about leaving my hair in certain hairstyles because I didn’t want people to notice.  Over the years, people did notice I had a smaller forehead and  I was often teased for it.   I  was never insecure about  it because it was nothing to ever be insecure about -  I just felt conscious that it would be the first thing people noticed about me… which let me tell you, it definitely is! 

 

But instead of taking all these jokes  to heart, I educate people as to what craniosynostosis is, because it’s not talked about enough so many people have never heard about it.  It’s my unique feature and it’s what makes me Maariyah. This operation truly changed my life: if it weren’t  for the plastic surgeons and doctors at Birmingham Children’s Hospital, who knows what could have happened.

 

I hope that people with similar conditions to mine feel relieved that there are others out there with craniosynostosis and that they feel more seen. 

 

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