Hi everyone hope you are all well. I posted a brief intro to our metopic journey a few months back but cant find that post so Im starting a new one.
Our lil man Charlie has metopic craniosynostosis and trigonocephaly (pls excuse any spelling mistakes, my latin is not too good!)
I self diagnosed Charlie at 7 weeks with a friend looking on google when I noticed he had a bony ridge down the middle of his forehead. He also didnt have normal temples, looked as if his head had been squeeed at the sides - we still loved him and thought he was gorgeous though .
I mentioned craniosynostosis to the Dr at his 8 week check up. He dismissed it saying lots of babies have odd shaped heads which didnt add up to me, he hadnt had any intervention at birth and only took 3 and a half hours to arrive.
I booked an appointment to see another Dr for a second opinion. I asked him to refer us to a paediatrician as they would no more on the subject even if it was just to reassure us!
When we saw the paed he also said Charlie was fine, took a shaky xray and said to come back in 4 months and he thought his head would have evened out. I knew it wouldnt so when we went back at 7 months and it hadnt evened out he said he had been to a conferene on cranio and he DID have it! I could of told you that 5m ago I thought!
Anyway, we went to Plymouth Derriford hos to see the neurosurgeon from Bristol Frenchayes. They could do the surgery there but we decided to go to John Radcliffe in Oxford as that is the leading supraregional craniofacial unit in UK.
We had an appointment to meet Mr Wall on Tues the 28th. We traveled by train. It was a long journey from North Devon - 2 buses and 3 trains each way! We left our older two children - Tommy 4 and Maisie almost 3 at home with my Mum and Dad. Mr Wall was VERY informative, he told us all about Charlies condition as if we knew nothing to make sure he didnt leave anything out. His mouth must have had a dry mouth after all the long words! Having met the surgeon we are honoured to have for our son we are more relaxed and reasured by meeting other parents who are on the 'other side' that our baby boy will be fine.
We are now waiting for the op date! It will arrive 8 weeks before the operation which will be performed between 12 - 15m of age. Charlie is now 10 months so we could get a date anytime from now til July I think! He will have the CT scan two days before the op so we will be at JR for a week providing all is well. Not sure whats best to do with our other two - maybe they can stay with my parents for the first 4 days then stay with us at JR with my parents staying near to whisk them away when we need to 'focus!' We would miss them alot if we were apart for a week and the play facilities at the hospital and accomodation re wonderful.
Well thought I`d fill you in - better go now Charlie is awake frm nap!
Thanks for reading our long story!