Update on Charlie - just met Mr Wall -JR Hospital, Oxford for metopic cranio

[shonamay]

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!

[*jules*]

thanks for sharing your story. I'm glad your appt went well and you are happy with you surgeon...that means EVERYTHING! LOL. Now, the waiting is very hard, but you will get thru it. Lean on us when you need to. :)

[Eleanor's Mummy]

Nice to read your story so far - i'm still amazed at how so many people have difficulty in getting their GPs or paeds to diagnose and refer to correct NS. We were very lucky that both GP and Paed made referrals and diagnosis very quickly.

Sounds like you are ready for the rollercoaster of sugery to begin - hope you don't have too long to wait for your surgery date. It really won't be long till your Oxford experience really begins.

[donnamilliezac]

Hi and welcome
can't believe how similar our stories are i'd say 99% the same, we too are metopic, self diagnosis, crappy local doctors, went to Oxford at start of this month and like you on waiting list for op in 3-6 mths time, who knows we could end up there at the same time.

[sopirala]

Hello All,

I have never realised that there are some many kids like mine with Metopic synostosis. My Daughter was born on 17 Feb 09, as soon as she was born i asked the delivering nurse, why the shape of the head is triangular, she said that they will send the baby for a x-ray and see what the problem is. The baby Doctor had doubts that it would be a pre-mature fusing of the suture. Then the dread ful news - x-ray confirmed that the baby had Metopic, they refered so to a specialist, the appointment was 6 months later, I preffered to go private to see a consultant, he was very good and explained the problem, now waiting for further tests, we were told that the surgery will be in and around 9-12 months of age. fingers crossed and parying for the little one will have a normal life style.

I am not at all sure why the little one has to go through this, we are very worried on the prospects of surgery and its out come.

Shashi

[Avery's Mom]

The waiting is indeed the hardest part once you get the diagnosis. You worry are we waiting too long? Is there damage being done.....but just look around the site at all the success stories with surgery performed at all ages and all stages of this horrible thing and you'll see it will all be okay.

We are 16 days post-op and Avery is almost 21 months old and doing great!

Hang in there!

[sharontomos]

Hi Shona

So glad your appointment went well. I was thinking of you all on Tuesday. Shame we missed each other by a week!!! It would be great if we could request (Donna too lol) the same date at Oxford - but we will probably there at different times as we are under different surgeons. Hope you had everything you needed for your stay.

Keep me informed of the date!!

[charliesmummy]

Shona im glad everything went well i told you that you would be impressed with Oxford & thanks for keeping me updated by text. Hopefully you will get a date for little Charlie soon. Lots of hugs xx