We'd built up a thick skin to the pity looks tied to a child in a pavlik the boys knew the hospital inside and out and would look forward to their banana milkshake and chips on our Friday visit to the hospital.
"Going to Mollies heart/hip/special doctor " became an accepted thing in our house.
Nic and I knew DDH (developmental displacia of the hip) and heart defects inside and out
Hip health has become a passion and we both strive to spread awareness where possible.
It was one of our many routine hip check ups that something completely left field was thrown at us.
Professor Eric ho began looking very closely at Mollies face.
He said he believed her eyes were too close together
He believed she had some form of cranio syntosis and he was calling his paediatrician friend in to have a look and would we mind waiting on hospital grounds for a while.
I knew cranio meant head. That's all I knew.
I also knew that mollie had a funny triangle shaped head, but it was Mollie and it was perfect. She had no flat spots nothing that I'd read was a worry.
My baby was fine I kept telling myself.
Michael lonergan the pediatrician came down after about half an hour he's a private doctor but frequents the royal Newcastle centre and the john hunter hospital. He was friendly gentle and kind
He was straight to the point.
He explained that babies are supposed to have two plates in their forehead enabling the brain to grow the massive amounts it does at the start of a babies life, he explained that mollies didn't have the suture (the gap between the two plates and this was what was causing her triangle head appearance (or trigonocephaly) her brain didn't have any room to grow.
Such big words
Such little brain capacity from me to process it
We recieved our referral to see him in a few months time to get our official diagnosis and go from there.
Time passed, mollie was semi cleared from her cardiologist as her atrial septal defects had closed and her ventricular septal defect was closing slightly
This was great news! No more 6 month cardiologist appointments and echoes
Only every 12 months! A relief for us and (call me shallow) a relief for the old hip pocket!
It wasn't until our follow up appointment for the pediatrician loomed ever closer that I began to
look into mollies condition.
The word we had been given had escaped my mind whether bad memory or if I'd just blocked it out.
Google proved wonderful at providing me with the name however and it was the diagnosis that shattered our peaceful little world.
Metopic suture synostosis
I hate that word now
Every time it explain to someone when they ask I prefer to use the word cranio. Broader term but I'm not sure why but it's less scary.
We met with dr Christie at his private rooms in Newcastle
He said her condition was very severe that he wasn't quite sure he would be able to do it here
But rather was sending us to Sydney westmeade children's hospital to talk to dr chaseling and the craniofacial clinic.
I was reeling
My baby my tiny special little baby who had already endured so much.
Surgery was a definate.
I would blog those weeks
Those appointments but really I can't .
In all honestly those weeks I cannot remember my heart was crushed to breaking point and I struggled to breathe it felt like I was swimming that I barely got my head above the surface to take a breathe before I plunged back under.
I remember being told what the surgery would entail
They'd cut in a zig zag from ear to ear pull down her face remove the section of her skull from just past the top of her forehead to the top of her eye sockets.
Then they'd cut those pieces flip them around "panel beat" them to remove some of the bone memory and wire them back together slightly bigger than they were supposed to be so that her brain could grow - over correct they called it.
We finally got a date for surgery.
To be continued.
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