Children's craniofacial surgery

[ginmakesitallok]

I'm off to bed soon - but did anyone see this??? Absolutely amazing! Those surgeons are simply awesome (not a word I've ever used!) Jaw droppingly good (no pun intended)

Amazing.

My nephew has Aperts and is being treated by that team at the sane hospital. They certainly are amazing. Thank goodness for our NHS

It's a series of 3 I think - sane time next week

excellent programme and amazing surgeons. Those poor kids and parents

Amazing stuff. The children and parents' bravery was very moving.

It's on next Monday BTW, not Wednesday.

really amazing programme - the skill of the surgeons, incredible. Those poor parents and children - how little Dara's mum held herself together I don't know, she must have been terrified when he was having his op.

Yes I watched this - amazing. What touched me most were the parents of the little girl with part of her skull missing, saying they weren't going to wrap her up in cotton wool - that's brave!

The surgeon in tears over his lost patient from three years ago got to me. What an amazing team of surgeons- very grounded and humble despite world class skills.

My son's op was filmed for this series, and I was interviewed, but I don't know if we're actually going to be in it. Our photo was used in promotion material though:
www.passiondistribution.com/index.php?content=2&navID=1&show=400

Sleepysox I wonder if you've met my sister ...

sleepysox - I hope the op went well for your gorgeous little boy, and he's making a good recovery. It must be so very hard to cope with your DS going through such long, complex surgery.
It looks like the hospital has a wonderful dedicated team. I wish your little one all the very best

extremely good viewing and opens your eyes to what syndroms are out there. Amazing dedicated team in what looks like a wonderful NHS hospital.

Filmed extremely well. Wishing all those children on there lots of love x

KurriKurri- the op went brilliantly, thank you. He had a fused suture on the front of his skull that was inhibiting brain growth, so he had his forehead removed and replaced with a portion from the top of his skull, and his old forehead went to the top to take its place (if that makes sense). Since the op, DS had come on in leaps and bounds, he has learnt to crawl and the docs now think he'll eventually walk, which is brilliant. He has a rare brain condition too and is totally exeeding expectations with regards to his physical development.

The team were brilliant. I had total faith in them and their expertise. We were just worried during the op about the bad things that could happen which were out of their control, but luckily everything went smoothly.

Onlywantsone- it would have been a brillaint coincidence if I had met your sister, I only met one lady whose son has Aperts in the waiting room- her son was about 6? I think and she invited me to join an online forum which supported families with kids with cranio problems. I think she had blond hair, but I can't remember much else

That's great to hear sleepsox - and brilliant he is crawling and making such good progress, - he sounds a determined little guy

sleepysox, thats a fantastic out come, how old is your little one?

My nephew will be 2 in August - so probably not her!!

He's 18 months :o

Oh bless him. And you. I know it must be very hard. Have you found any help or comfort from specific support groups x

I watched this, the surgeons are such incredible people aren't they. I am in awe of them.

Aww, lovely to hear sleepy, I really hope you are in the show, what a lively picture that is.

onlywantsone- I haven't really found any groups that we fit into- DS had the fused suture, so there's a cranio group for that, but he also has a brain condition called ACC and I do belong to a FB group about it, but I find it hard as there's families with much older children and I read their problems/ stories and get worried about how DS will end up. He's better than some with the condition, but alot worse than others.

Thanks peachsmuggler, I'm pleased with how the photo turned out.

this was an amazing program - what a team of medical staff. So caring and professional. I couldn't believe how strong the families were - hats off to you all!

My dd1 had surgery @Oxford when she was 1 year old..

She is 16 in October! She had fused sutures. I found watching the programme really difficult - in a thats what they did to my baby kind of way.

They are an amazing bunch of people and Sue - the nurse on last night is one of the most amazing people I have ever met.

I remember the day of surgery like it was yesterday - 7 hours never seemed so long. And to think we went home 5 days later!

onlywantsone- how's your nephew doing and your sister? Does she get any support from forums, respite etc?

brightidea- who operated on your dd- was it Mr Johnson or Mr Wall?

HOw's she doing now? Did she have to have any further ops?

Morning!

Steve Wall did the OP. Sha has had no further cranio surgery but had ICP monitering several times. Last year she has a poly filler type substance injected into some areas - no scarring to fill in the odd bump.

Her main issue now is cosmetic - she has a very small recessed jaw but the cranio/orthodontics are sorting that out. She has just had braces fitted and in 18 months or so will have her jaw broken and reset, they will also increase the size of her upper lip.

We are seen by Steve Wall about twice a year. We are in close contact with the Physcologists as well.

OOh gosh, sounds like a lot of ops. HOpe it all goes smoothly for her. We don't think DS will need any more ops, but we'll find out when we have out check ups I think.