Should I ask for a referral for large facial birthmark

[LadyEastEnd]

My 9 month old DS has a birthmark that covers most of his right cheek and goes up over his eye to just under his eye brow. It is a hypopigmentation patch so it is considerably lighter than the rest of his skin. He has light caramel coloured skin on the rest of his face and body (he has mixed black and white heritage) but this lighter patch has remained the much lighter colour he had at birth. It's not totally white and not as light as DH's white skin.

So we've had brief chats with a few doctors about it - none specialist dermatologists though. One was a neonatal brain specialist who saw him at 1 week old (regarding an unrelated issue that turned out to be nothing) and said it was unusual but couldn't be vitiligo because of his age. Our gp at the 8 week check hadn't seen a light patch birthmark before but hoped it would go away by 1 year. Another gp we saw recently for another matter was equally clueless about it. A month ago we saw an allergy specialist at St Thomas' hospital who attempted to give an explanation about how skin cells develop but was not very sure about it also. However, he doubted it would go away and said it had nothing to do with being mixed raced. The health visitor was also concerned that his vision was affected by the birthmark covering his eye (his eye lashes are lighter on that side).

I'm a teacher and I don't recall seeing this type of birthmark in over ten years, so I know it's very rare. However my friend's 15 year old daughter has two large patches of light skin on her arm that have grown with her (she is also mixed incidentally).

I understand that the birthmark is probably benign medically, however I do worry about the psychological impact on my son as he gets older. The shape of the patch reminds me of the phantom of the opera, which isn't great.

Should/can I ask for a referral from a dermatologist for a diagnosis and advice for the future? Alternatively, what is the process for going private?

[CheekyMcgee]

Hi OP, I have no medical advice to give but if you're worried about the psychological impact when he gets older, I can highly recommend the charity Changing Faces which supports people with conditions that affect their appearance. They are brilliant and helped me enormously (I don't have a birthmark but a genetic condition). Www.changingfaces.org.uk

[sleepy16]

Hi I'm white British and I have a 'white birthmark' on my stomach and so does my dd.
Never thought nothing of it and was just told it's lack of pigment from when being a fetus to that area.
But as your little one covers one side of his face I would certainly see a specialist.

[dailymaillazyjournos]

dgd had a dermatologist for a largish birthmark on her face. I think it gave dd peace of mind as to exactly what it was and whether anything could be/should be done about it if she is very conscious of it as she gets older. I would ask gp for a referral or if you are able to go privately, to do that.

[Karoleann]

Is it like this?

www.dermnetnz.org/lesions/naevus-depigmentosus.html

I would certainly ask for an opthalmogical opinion too.

[HawkingsMead]

With a birthmark that big you should also be referred to a geneticist as well
As opthamologist and a dermatologist.

I'd just find the best - the best geneticists are usually on the NHS in the UK but others I'd go privately - where are you? If you in London I can make recommendations for private.

[HawkingsMead]

You can self refer to private consultants - unless you need to use insurance in which case you need a referral from your GP.

some GPs will 'only' refer you to a paediatrician first then the paediatrician will make further referrals.

If you pay privately you make the appointments yourself.

[LadyEastEnd]

Thank you all for the replies. I'll definitely push for a referral to get some answers from a specialist.
Karoleann it does sound like the condition described in the webpage you linked.

HawkinsMead I am in London so recommendations for a specialist would be great in case I have to self refer.

[uggmum]

My ds has white patches on various parts of his body. Knees, elbows and on his arm.

You can't really see them unless he is tanned. The patches do not tan at all.

It hadn't occurred to me that they could be birth marks until I read this thread