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Birthmarks - want to speak to someone else whose child has a facial birthmark

(45 Posts)
Likeasow Thu 03-Jan-08 21:49:43

My DD has a large facial CMN - a hairy naevis (should be able to spell it by now really) - she is 5 now and I could do with some advice and moral support.

purpleduck Thu 03-Jan-08 22:32:50

not me, but i'll bump for you- someone much wiser than I will be along shortly.

TwoFirTreesToday Fri 04-Jan-08 12:00:14

My daughter is nearly four and has a naevis on her temple. I felt very selfconscious of it when she was a toddler as she had fine hair and people would comment on it, but its hidden now. She has never worried about it, even when other inquisitive toddlers gave it a poke. Does your daughter worry?

I was told that it would get smaller and fade, but so far it hasnt. I have no advice but didnt want to read and run with out saying anything. Our situation is so different to a very visible birth mark. Who have you seen about it? Have they mentioned steroid injections? Have you seen the MSN support group?

littleshebear Fri 04-Jan-08 16:20:45

My daughter has a smallish naevi on her lower cheek - about 1cm long. She is also 5. Don't really know what to do about it - don't think it could be very successfully removed as it's quite hairy now. She is 5 and not worried about it yet.I do worry she will be concerned when older, or teased about it, although it's not very big it's quite noticeable. How big is your daughter's?

DaisyMoo Fri 04-Jan-08 16:58:57

My dd has a cavernous hemangioma and we joined the birthmark support group It's free to join and they can offer support and practical help.

Likeasow Fri 04-Jan-08 20:21:31

Thanks for your replies. My daughter's is quite big - about 10cm on her cheek round the side of her eye to her ear - it too showed up much more when she was a baby with fine hair but now it is a little hidden by her hair but still quite visible. She is in Year 1 at school and has just started to get upset about it at times. Kids have always asked about it but now she says she hates people always asking what it is and young kids are not tactful! Its not 'what is that?" but what is that yucky thing on your face (we think its quite unique and beautiful of course!). We joined the Birthmark support group and Caring Matters Now (it is a Congenital Melancytic Naevis - CMN) who have been helpful - they are doing research into how to treat and what causes them. We have been seen at the Great Ormond Street Birthmark Specialists. They suggested various options when she was a newborn but we didn't want to do it - the 'after' photos didn't look worth the pain and worry and we hoped that she would learn to live with it....however - now she is older and the kids are more blunt (they don't really notice difference in other kids until around 5/6 apparently and this seems to have been the case). She is a confident kid luckily. Just breaks my heart when she cried the other day and said "I just wish I had one friend with a furry birthmark like mine". I am trying to find her one!

Likeasow Fri 04-Jan-08 20:22:45

Littleshebear - do you shave it?

littleshebear Fri 04-Jan-08 21:11:03

I have just left it alone, to be honest. I think if you shave it it probably would cause more problems, but the naevi itself is sort of freckle coloured and she's got ginger hair so it's about the same colour as the birthmark. I have asked GP/HV about removal when she was little but they were a bit uninformative and on research, like you, it seemed that they are not very easy to get rid of and especially not as it's quite hairy.I was hoping she could just accept it as part of her, but I am worried about when she gets older.

claraenglish Fri 04-Jan-08 22:04:45

Message withdrawn

claraenglish Fri 04-Jan-08 22:06:18

Message withdrawn

Likeasow Sat 05-Jan-08 09:59:09

Thanks Claraenglish - I haven't worked out the whole CAT thing but will try....
We shave DDs as the hair just grows and grows - it includes a part of her eyebrow and that gets really long! I hoped that she would learn to accetpt it too as you said Claraenglish - I know it will be hard especially at secondary school but I was called "Pirate" there for my 'sunken chest'! oh the wittiness of 14 year old boys! - there is always something at that age to make you insecure....

Likeasow Sat 05-Jan-08 09:59:09

Thanks Claraenglish - I haven't worked out the whole CAT thing but will try....
We shave DDs as the hair just grows and grows - it includes a part of her eyebrow and that gets really long! I hoped that she would learn to accetpt it too as you said Claraenglish - I know it will be hard especially at secondary school but I was called "Pirate" there for my 'sunken chest'! oh the wittiness of 14 year old boys! - there is always something at that age to make you insecure....

DebsCee Sat 05-Jan-08 18:01:09

My DS has a large facial hemangioma - not the same kind as your DD but large and disfiguring all the same. I found a US/European based MSN support group the best place for advice and contacts.

We have recently set up a website about our son and the birthmark here

littlerach Sat 05-Jan-08 18:14:48

One of my best friends has a red wine/port birth mark down one side of her face.

She wasn't ever teased at school about it, I can only remember one occasion when we were in a club when someone aske dher about it.

She used ot use a specialsit make up to lighten it, and did have laser surgery at primary, then again as an adult, but it didn't relay make much difference.

I realise that it isn't the same kind as your child, but wantde to give you a positive story. smile

katylessbumpy Sat 05-Jan-08 18:29:06

hi, my dd has a large birthmark on her forehead,she is only 8 months so haven't had any bullying although i have had some very unkind remarkssad
pics on profile

Likeasow Sat 05-Jan-08 19:38:38

Ooh she is lovely Katylessbumpy - i nearly punched many a stranger in Ikea etc for unkind remarks in the first year - amazing how stupid and insensitive adults can be - kids are more straightforward "whats that". Used to really upset me but can handle it now - or give them evil stares over DDs head. wink
Thanks Littlerach...now to look at your website DebsCee

PaulaYatesbiggestfan Sat 05-Jan-08 19:46:35

gorgeous pics katyless

likeasow - i have no personal advice but think the birthmark assoc may be your best bet

I just wanted to add - when i was at university there was the most beautiful girl who was going out with a much coveted bloke !!! ( swoon! he was lush)
She has a portwine stain - I think thats how she referred to it - on the side of her face that adjoined her eye
Seriously it actually made her more beautiful. I am sure as a child she suffered because of it - to some degree - but like someone else said on here - as an adult i do think she liked it. We all certainly did x

Likeasow Sat 05-Jan-08 20:04:00

DebsCee - thanks for the MSN website I have joined it - lots on there. I also contacted 'Changing Faces" - I am sure you are aware of them? They were really useful and are trying to find a friend for DD around her age - we've been to a few family days with the Birthmark support group too. Looks like you have a lovely brave son - can I ask what kind of surgery? skin expansion? that is what has been offered to us among other more brutal sounding things (dermabrasion etc).

Likeasow Sat 05-Jan-08 20:06:37

Paulayatesbiggestfan - we think it makes her more beautiful too - she is doubtful now but perhaps when older....

Likeasow Sat 05-Jan-08 20:17:43

DebsCee - are there no surgeons in the UK with the experience and ability? or is it much more advanced in the US?

perpetualworrier Sat 05-Jan-08 20:59:42

My DS2 (age4) has one on his cheek. So far other kids have been curious but he doesn't seem upset by it. The only medical advice I can get is to watch it for changes, but that any removal should be left until he wants it done. Apparently the scar is likely to be worse than the mole.

I have one on the back of my wrist. When I was a child, my dad played a blinder. It was always referred to as my beauty spot and I was really proud of it. Obviously wasn't on my face and not sure if I would have felt the same if it was, but Dad's positive attitude towards it has meant it's never even occurred to me to want it removed.

Likeasow Sun 06-Jan-08 19:43:57

Thanks perpetualworrier - that is how we feel - should wait until if and when she wants it done. We are being positive (we like it) - so hopefully it will have same affect - she isn't upset by the BM as such - just other kids questions and attention to it. We had lots of pressure from doctors to have it 'seen to' though - when she was just a few days old - which I found very hard at the time. My new perfect baby and doctors telling me to put her under a general so they could give her dermabrasion 'otherwise it would be too late'. Glad we ran for cover! We are going for regular check ups at Great Ormond Street to watch for changes etc. They checked it didn't affect her eyesight etc. Also used to suggest an MRI but we didn't do that as she seemed to young - now they suggest waiting until they are older for that anyway. More for their research than necessity I think...

DebsCee Tue 08-Jan-08 21:25:27

LAS - glad you found the MSN site - people on there are fantastic.

In short the UK policy is to wait until the child is older before operating, if we had done that my son would have lost his eyesight and usffered permanent scarring, and that was following constant referrals to every birthmark specialist in the UK, including GOSH. I'm not a fan of the NHS attitude to hemangiomas(as far as my DS1 is concerned), though I know a few people who have had good experiences.

Having stumbled across the MSN site I found Dr Milton Waner and Dr Aaron Fay, US facial reconstruction surgeon and occular surgeon, 2 world renowned experts. Dr waner works solely with patients with extensive birthmarks. There are no other surgeons in Europe with the experience or expertise that he shares with a few US colleagues.

My son has reconstructive surgery - plastic surgery basically, no expansion, but lots of lifting and re-positioning. Much of what they have worked on has been beneath the surface of the eye, plus some laser treatment which has significantly accelerated the lightening of the mark.

I hope that's helpful, please ask if there is anything at all I can help with.

Likeasow Thu 10-Jan-08 20:59:23

Thanks DebsCee. Although our DC have different birthmarks I may be back with more questions.

SpawnChorus Thu 10-Jan-08 21:23:43

Just popping in to say that I had a birthmark as a child. It was a haemangioma on my upper lip (approx 1cm wide and slightly raised). It hadn't disappeared by the time I was 6/7 (although it had faded considerably) and my Mum took me to a surgeon. She was of course doing it with the best intentions, but I wish she'd just left it alone. I've since read that the chances are that it would have faded more/disappeared entirely given enough time. I now have a scar on my upper lip which is not the 'barely noticeable white line' the surgeon promised (it's a couple of mm wide and slightly pink, and you can still see the stitch marks!).

So if it is an option, I would thoroughly recommend waiting until your DC is older/can decide for him/herself

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