Hayden – Sagittal

IMG_3009 (2)Hayden was born on 28th January 2013 he was healthy and passed all checks by the pediatrician we took home our perfect little boy walking on cloud nine. Months passed in a whir of happiness, nappy changes, feeds and everything baby until one day when Hayden was 7 months old, I was at my Doctors (GP) for a routine appointment for myself when the GP commented on the shape of Haydens head. She asked if anyone was monitoring him and it was of concern to her. I left the GPs office felling confused, my little boy was perfect…what was she talking about?

But nonetheless she raised concern and worry in us so we booked an appointment to see a Paediactric GP.  He said she was right to be concerned and we must see a specialist as soon as possible.  He first believed Hayden may have Macrocephaly (a large brain) but once having an MRI scan it was determined that although his brain was fine (thank God) he actually had craniosynotosis specifically the saggital suture had closed prematurely.

We were so frightened, we had never heard of this condition before. I came home and spent nights researching on the internet.  I even practised saying the condition…It was with my research I found Cranio Care Bears, the kindness I was shown blew me away and seeing all the other childrens stories made me strong.

They told us Hayden would need surgery to correct this after seeing videos and pictures online I knew what was involved in the cranio remodeling and was petrified. We were so upset you can’t help thinking ‘why my baby?’ Unfortunately some people in my life made comments such as ‘we thought there was something wrong with his head’ I was furious people had been talking about my perfect little boy and didn’t even have the decency to mention thier concerns to me?

In the meantime Hayden was doing so well, I still couldn’t understand what was wrong to me…he was perfect.  There was a part of me that didn’t want him to have the operation.  I believed I was taking a risk with my sons life for no reason (as I saw it) but deep down I knew he needed it and the neurosurgeon explained without surgery, Haydens future would be unknown.  He may suffer learning difficulties, sight problems, pressure and even brain damage.  As a mother I could not allow even the smallest possibility of my son not having the most amazing wonderful life possible so I agreed to do the surgery.  Fortunately by this time it was only 3 weeks away on Friday 13th December 2013 at Great Ormond Street Hospital London.

Hayden was in theatre for 4 1/2 hours, he needed a blood transfusion (a common procedure with this operation).  When we went into recovery there was our little boy wrapped in bandages, drips, tubes, wires…I felt sick….but he woke up and drank a bottle of milk and we cuddled him.

He then went on to absolutely amaze everyone with how he ‘just got on with it’ within 48 hours he was playing with toys like nothing had happened.  He was very swollen but was happy and I looked into his eyes and knew it was the right decision.  His bravery and love gave me all the strength I needed. He was discharged day 3 of his operation.

He is now 13 months old and we are over 2 months since the operation, his head has healed amazingly.  The strip of hair they shaved has nearly grown back, he his doing amazingly a cheeky, playful, beautiful toddler.  I now KNOW it was the best decision for him, and can finally look back on photos and what others saw that he did need this operation, and now I am so proud he is a Cranio superstar and I want everyone to know.

I would like to dedicate this to my Family, Friends and Fiance for all being my rock, for all the other mummys that posted stories, videos & pictures…keep spreading the awareness and giving us all strength when we need it most (its so important) and to Cranio Care Bears for being so kind and wonderful and bringing hope and light when you felt there is only darkness.

And most important to our Special little boy Hayden…We love you more than anything, you’re my light, my stars, my world, always x

 

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