Baby mumma – Metopic Craniosynostosis

Mum worries about my head…I am worried about her being crazy embarrassing

Boston is one little man who goes against the odds. He was conceived from luvin 5 days before I should have been fertile, along with only 5% of other babies he was born on his due date and like only 1 in about 15,000 he has Metopic Craniosynostosis (still trying to pronounce that one).

What does that mean exactly…in simple terms at some point during his time in my belly the two bones that form Boston’s forehead fused together. This would not happen to most children until they reach around six years old. For Mr B it means a ridge runs vertically on his forehead, his eyes a slightly closer together, his right eye has trouble opening and his head is taller but smaller in circumference. That is the outside, on the inside his brain has a little less room then most babies his age and his bones are slightly different in shape.

What we know for sure is that Boston will have surgery to split the fused bone sometime before he is 12 months old. It is a procedure that happens quite a lot with great results and the experts tell us that after surgery it will be hard to pick that there was anything out of the norm with Bozzies skull. What we do not yet know is whether there will be other affects caused by the syndrome, either physical or with cognitive function, but time will tell as it always does.

Becoming a parent adds a dimension to life, suddenly you are responsible for an entire human being, undeniably with that responsibility comes new worries and concerns. Comprehending what exactly Metopic Craniosynostosis means to me has been difficult.

From day one the medical professionals have been very positive and optimistic. We keep a close eye on his development, making sure he reaches milestones like smiling, grasping, cooeing etc (and with some he is ahead of time *proud*). We make sure he see’s the local health care nurses to check weight and growth every two weeks, every six weeks we visit our wonderful paediatrician at Tweed who keeps us up to date with results and more specific health issues, then it is a waiting game to see when exactly the team at The Mater Children’s Hospital will schedule surgery (but so far they plan between 8 and 10 months). In general the attitudes are really relaxed and so in general I feel completely fine about Boston’s little forehead journey.

But he is still my baby boy and I still worry. I worry about the unknown. Will the surgery go as planned? Will it have long lasting affects we do not yet know? Will he struggle to learn new things or grasp new concepts? Will he be bullied about looking unique? Will this little part of him define who he is in any sort of random negative way? The essence of any question is will his wellbeing be affected?

When I begin to worry too much I play a little game in my head. I remind myself that no matter how much we love our children their future is always unknown. I remind myself that any child will have to face many challenges, we can never know what they will be. I convince myself that no matter the challenge Boston has to face his dad and I will give him the tools to work his way through, and when we don’t have answers we will still be unshakable support.

I do not know why Boston was given this challenge but I know it is teaching me acceptance, maybe that is a lot of what being a parent is about, accepting we can not control our children’s journey, we can only guide and support them with all our best intentions.

2 thoughts on “Baby mumma – Metopic Craniosynostosis

  1. You are a truly inspirational, amazing person Nelly and so is that man of yours. You have guided me as an adult through any issues I have experienced so Bozzy is blessed to have you guide him through his journey. Its warming to have a diagnosis – it makes him all the more special in our hearts xxx

  2. Nelly, this was beautiful to read and anyone who knows you would agree your outlook on this is you all over! Having a downs syndrome brother of my own I know first hand that any challenges Boston faces in his life will all be made ok because of one thing. YOU! Just like my brother, Boston will never be any different to any other little man. In fact he's got more going for him than most kids could dream of. A mum and dad that are two of the most exceptional people I have ever met! Plus an uncle that will ruff up his hair, rub his face in the mud and treat him as any other little dude, coz that's what he is! xxxx

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