BBC Documentary

[Sam Y]

I know a few of you overseas expressed an interest in watching the documentary the BBC aired a few weeks ago filmed at Oxford.

I now believe you can view it at the following link. Hard for pre-ops to watch so be warned and if you do watch it is worth remembering all the cases shown are syndromic and have multiple issues alongside their craniosynostosis. I found it amazing and as its where Aaron is being treated it gave me complete confidence in the team who will be (one day!) operating on him.

[/URL][url]http://www.oxford-craniofacial.org/ (http://www.vimeo.com/17884799)

[Janet]

Thanks for sharing the link, I saw this on FB today. I watched about 10 minutes and had to turn it off, I'll probably watch it after Fiona's next surgery.

[Carmen77]

:scared2Oh I cant get myself to see it!!! :scared I really wanted too, but I'd rather not!!!

Thank you for sharing, though I'm sure there will be someone who want to though!! Just take out the kleenex before you do!!

[monty]

That's Dr Johnson wow. I hadn't seen this. Thanks so much for posting this!

[jjmc123]

I can't wait to see it!....well I am squeamish so maybe not the best idea, but still fascinated :giggle

[Sam Y]

I got the email and when I saw it on fb thought I'd post here just in case we have some non-fb members. It's tough to watch Janet I don't blame you for not watching. I had to leave the room for the surgery scenes but watched the rest.

[zayna]

Hi,
Just say I watched all 3 episodes, it was very graphic, but very informative. It even showed one child having a frontal orbital adv, thats what zayna had. I was full of tears, but at the same time truly amazed.

[Zoe's Mummy]

I watched this series when it first aired before Zoe had her surgery. I usually cannot watch surgery but i felt for this surgery i had to watch. The series is compelling but not for the faint-hearted!

[JIC0930]

Thank you for sharing! I just finished watching the first episode. I am not squeemish but instead very inquisitive. I couldn't not watch it. My hubby was sitting next to me playing a game and when he realized what I was watching he asked me to turn it off. It bothered him since Kd might have surgery one day. I just turned down the volume :giggle.
Anyways, I was quite surprised that the parents of the little girl who was missing most of her skull chose to leave her unprotected. I was confused on why they wouldn't use plates. Instead she had a skin graft. That part was very confusing but over all I liked seeing how they reshaped the skulls.
Maybe I'm a bit weird.

[Christina's_Mommy]

I was too....

[Janet]

What?!? Parents actually decided to leave their daughter's soft spots untreated?
I'm so freaked out about Fiona's upcoming surgery and I wish to God that she was not facing this, but there was no question in my mind not to have it done, it's a safety issue, I want her to be able to play sports and not to be held back from anything because of cranio.
I tried to watch it again last night while Keri was watching the hockey game...I had my earbuds in and Keri looked over and saw tears starting to form in my eyes, so he got up to see what I was watching, he told me not to watch it....and he was right.
I just can't do it, I know exactly what they did to Fiona, but I can't watch it.

[Sam Y]

was that the one where it was so rare it didnt even have a name?

[Janet]

Not sure Sam, I didn't watch it....I was reacting to this:


Anyways, I was quite surprised that the parents of the little girl who was missing most of her skull chose to leave her unprotected. I was confused on why they wouldn't use plates. Instead she had a skin graft. That part was very confusing but over all I liked seeing how they reshaped the skulls.
Maybe I'm a bit weird.

[Dedicated Dad]

It was an amazing documentary & I'm in two minds as to whether I could've / would've wanted to watch it pre-op. One thing is certain though, those people have mad skills.

The lil' girl with most of her skull missing was a strange one. It was the parents choice & , as it wasn't known what would / wouldn't happen with / without the op (I know / I know), they decided to "Wait & See" :jawdrop

[JIC0930]

Janet, I thought of Fiona while watching it. They never mentioned plates just that when she was younger they turned down a bone grafting procedure which would use a rib or two to create a lattice of bone over her skull. Yes, her condition was so rare it didn't have a name and I don't know if there were other issues. That part was vague but she seemed like a very normal little girl.
The crazy part was at the end she was on this crazy high tire swing. :jaw What if this girl falls? Wouldn't it be almost definite brain damage?

[Janet]

The crazy part was at the end she was on this crazy high tire swing. What if this girl falls? Wouldn't it be almost definite brain damage?

That's why I would never not do the surgery....and the scary part is, I can only feel 2 soft spots on her head, when most of her skull under her coronal scar is still open and the only reason we know this is because of the CT. I know that there is still protection over her brain, but not as much protection as a skull!!

[jjmc123]

What freaked me out by this girl was that she had this huge missing part of her skull, and then they show the dad pushing her on a rope swing high up in the air. What if she fell????!!! :react However, I do respect the parent's decisions.

[Sam Y]

I remember now! Yeah I don't think I would have made the same decision they did. If I did she would be wrapped up in cotton wool!

[Jude'sMummy]

I remember panicking when she was running through the field incase she fell!!!! When she was on the rope swing my heart nearly stopped!!! :-0

[babyaudrey]

Thank you so much for posting this link, I have wanted to watch this from the moment I heard about it. I sat and cried the entire time, some happy tears, some sad. I feel so much for those families and children and I am just in awe of the medicine behind making our kids better. We are sort of in the middle one surgery behind us and one (at least) more to go so I wasn't sure watching the surgeries would be a good idea but watching the procedures didn't bothered me for some reason, I was just so amazed. It was also neat to see the distractors being put in since that is what Audrey just had done.

[NateJrMom]

Thank you for posting the link.


I watched all 3 episodes and found them to be very informative. Some parts were a bit graphic, I have a week stomach lol, but I couldnt stop watching. My sons surgery is coming up and I now feel more informed.

I was thinkging is there a way to make these links permanent so other parents who are new can watch the videos? Just a thought