I couldn't let this thread pass without adding my bit.
My DS, now 2, has a strawberry birthmark (hemangioma) which covers 70% of his beautiful face. It closed his eye and his throat and caused deafness in 1 ear. It appeared when he was 3 weeks old. These types of birthmarks occur in 1 in 10 babies, so not as unheard of as I had always believed. Though I should add, to have them as severe as my DS is very very rare. We have learnt that his birthmark is amongst the largest in facial coverage in the World.
To cut a very long journey short, despite numeroues referrals to specialist clinics, including GOSH, we could find no-one who was prepared to perform surgical intervention, and my son ended up on high dose oral steroids for the first year of his life. (That's another story entirely) All this despite the severity of his mark. At the time we did not know enough to question the approach taken by the doctors - all very sympathetic of course, but none could give us what we wanted. We didn't want sympathy - we wanted knowledge, options and action.
I luckily found an MSN support group and through them found other UK parents who had sought advice from the some of the worlds leading experts, mostly based in the US. My son was on the verge of losing his sight and when the experts at GOSH said they would do nothing further until DS was school age, we contacted a world specialist and have now been to Berlin 4 times for reconstructive surgery. My DS can now see from his affected eye normally - but this is after 2 years of eye patching and surgery. If we had taken the advice we were given in the UK he would not be able to see at all from that eye now.
I know of other parents that have had success seeking out surgery in the UK and most of those have seen the laser specialists at GOSH, NOT the birthmark clinic. But most of the parents I have met have similarly consulted US doctors who visit Europe 3 or 4 times a year to perform laser and reconstructive surgery.
I must have had every comment under the sun from ill informed and ignorant stangers about my sons mark - older children are very often the cruelest I find. I take it as an opportunity to educate people, but very often have to bite my tongue! My DS does not look 'normal' yet but we are on the way to achieving that, unfortunately some time later than it needed to have been.
If anyone is interested, the MSN site address is MSN Site . My son is Ellis and his album can be found half way down this page, though the pictures there are at least 1 year behind!
After everything we have been through I consider myself something of an expert, thanks to the wonderful Dr M Waner of New York; I had even begun to start a UK support group, but after seeing the MSN site I know I couldn't do anything better than that. Don't get me started on the NHS and the ill informed and out of date advice that is given by GP's etc in the UK - I could write a book, and one day when our journey is over, I just might .