DS1 needs an operation on his skull has anyone else had similer experience?

[magazinefiend]

he is 4.5. when born we noticed a bulge at back of his head, which after a bit of medical messing about ( Oooh we've never seen this before it will need emergency surgery said one- just what two freaked out new parents needed to hear)it was diagnosed as basically just a big gap in the bone. it is covered by skin and hair and is about the size of a thumb. DS hasn't even noticed it and it hasn't posed any problems except that i worry about the lack of brain protection. surgeon told us it would probably grow over but has changed his mind now and wants to insert a steel plate under the skin to cover it. Has this happened to anyone else? how do i explain it to him? am waking every night in cold sweat having nightmares about operations.

No similar experince but my DD has had two ops (and needs more). I can really sympathise, it is so hard to think of anything else. Are you happy with what the surgeon suggests? If not you can ask for a second opinon. I'm also wondering if there is a support group for parents of children with the same condition. I get lots of advice from ours.

i have had experience as a parent

my youngest is 15mths and going in on november 3rd for a 10 hour total re shape (frontal orbital advancement)
in other words complete face off re shape his entire skull re build his face

i know what you mean im terrified here, im sorry i wont be much comfort to you, but just wanted to let you know your not alone, even though i feel very very alone

my son has a terminal condition and this op may save his life.

where are you having it done?

also explanations are best kept to the minimal but let him know he will be going for a stay in hospital, there are some fantastic books and the therapists will be good on how to advise you on what to say , they can also explain via lovely picture books, made from other children,

if youd like to chat about it, please feel free

take care x

disneystar1
I am so sorry to hear that and wish you lots of luck. Your childs operation will be longer and more complicated as far as I can tell as mine is to correct a small defect rather than life saving. He will be having it done at Frenchay Bristol, not sure when yet had scan today to determine exact size so they can manufacture the plate.
I will think of you on November 3rd.x

My friends DD had much the same operation as your DS Disneystar - is he having it at GOSH ? Hers went really, really well, and made a huge difference to her appearance, and the staff at GOSH were fab