Facial Haemangioma - Has your DC's been treated or left?

[Bellared]

DS has one above his right eye and luckily it's not a size where it is an obstruction.

Everytime we go out we get about 3-5 people stopping and asking questions or making comments about it.

DS doesn't mind the attention one little bit as he is a show off and loves getting fussed over.

Has your DC's GP/Plastic Surgeon treated it or have they said they are going to leave it as it will eventually fade after a few years.

What treatment did they give?

DS's has been left because it isn't causing any medical problems.

My DS1 was born with a huge haemangioma which covered most of his face. He is now 5. He has had a number of reconstructive surgeries, though all of these performed in Berlin by a US surgeon who is the leading specialist.

Our sons was destroying his eyesight so we really had no choice but to operate, the problem was that there was no surgeon in the UK with the knowledge or expertise to do so. We researched and found other UK parents who had seen US doctors and that's where our long journey began, thankfully only 2 surgeries remaining now!

There are some pics on my profile if you want to see for yourself, I'll add some of when he was a baby so you can see where we started from.

My only advise to you would be to make sure that the vascular mark is having no unseen impact beneath the surface, as we have met parents of babies/toddlers with smallish marks on the face near eyes, nose etc and some did require removal because of the impact they would have or were having on bone and or cartilage on specific areas.

Wow, sorry for waffling on, but this is a subject close to my heart and I feel like something of an expert!

Actually Bella, we've got a website with most of his baby photos on so you can see for yourself and I won't need to faff around adding photos to my profile (lazy!) Website here

Check him out now! It's unbelievable that you can't get the treatment paid for or at least part paid for by the NHS. He looks like a right cheeky little man.

DS's is only about an inch across and looks like he has fallen over as its a soft purple lump. I feel it regularly to see if it's attached to the skull or if it's spreading but it's stayed the same.

How did you handle the comments that people made when he was a baby?

To be honest I didn't handle them at all well when when he was very tiny, I snarled a lot when people were especially rude. I had one old lady tell me I was irresponsible for leaving him in the sun! That was an interesting conversation in the middle of Boots I can tell you.

I had to reconcile myself to the whole situation first before I could be less emotional when people commented, that was probably about the time he was 6 months old. Most of the time I would ignore silly passing comments, or I'd say "I'd much rather you asked me about him if you want to know what it is" which got the best response, especially from children and I felt that at least they went away having learnt something. As my son got to toddler age he used to say "It's just a birthmark, don't stare" and nowadays he's comfortable asking people not to be rude or not to stare, which is very disarming.

I think you have to grin and bear it a little whilst not being afraid to challenge anyone if you're inclined that way - it certainly made me feel better to reply some days.

I'd love to tell them to 'f@ck off' but its rude and setting a bad example.

He looks great, the surgeons have done a fab job. It looked nothing like sunburn!

I think cos the kids have grown up with it they just think comments are the norm (and also love the attention).

I can't get over how great your DS looks!

Why do all the comments happen in Boots? Is it some kind of meeting place for those who stare?

My dd had a very large haemangioma around her right eye. She had steroid treatment to stop it growing. I think now they might give statins, rather than steriods. She wasn't a candidate for surgery because the haemangioma blood vessels were all around behind the eye as well as in the skin.

Have you seen the Birthmark Support Group web site? There is info there about getting your child referred to an NHS birthmark clinic, if that's what you might want.

I used to hate the people making comments about the bm. One day (in a bank, not Boots lol) I lost it with an old man who made a comment, said something along the lines of how difficult it is having a child with a facial disfigurement, I hate talking to strangers about it, etc. After that people never made comments. Maybe I became too scary

it will eventually go in its own time but it could take years.

How can anyone from MN be scary? I'll have a look at that site and see what they say.

The PS said it will go in a few years and the old dude who does the security in the Jobcentre I attend has said that it has gone down a bit.

We should get T-shirts for the DC's with the info on.

My Dd2 has one on her chin, was about the size of an old 5p. It was left as it wasn't causing any problems. She is now 8 and its nearly gone away, its gone white and flatten, but its still there a bit.

SGK - LOVE the name! I've looked on your pics and I cant make it out, that's good.

He does look good doesn't he?!

We have been trying to get money from the NHS, supported by our GP and a consultant, but no joy yet. I could bang on for hours if not days, about how unfair it is, how ignorant we are in the UK about this kind of birthmark etc but I shan't!

Though it is true that most of these kinds of birthmarks fade or regress by the time a child is 10 years old, many won't disappear completely whilst others leave a mark which may not be particularly pleasing.

All I know is that every penny we spent and debt we accrued because of it was worth it to see him have 2 functioning eyes and hear him tell everyone how he can properly open and close his eyes now (after his last op).

There are very few consultants/experts with real knowledge of this in the UK, doctors that have seen and treated hundreds of babies and children with this kind of mark just do not exist here. The moment we met our US doctor and spoke with him for the first time we felt so reassured and confident especially when we got to meet many many other children, some now in their teens or young adults that had been treated by him, and many of those unfortunately began with far worse issues than our son.

If you do want to get a 2nd opinion I can highly recommend Dr Lieu (pronounced Lee) who works in Alder Hey, Liverpool. He has been training with some US experts and in my opinion is the most qualified person in the UK and the only UK Dr that I would trust with my son.

I am not sure whether it was the same thing, but a toddler I looked after years ago had a big birthmark on her face, which was treated by laser treatment several times a year until she was about 7 or so. This was at the Lister hospital in London. It is now very pale, and the decision to stop was hers, after the doctors said they had reached the point where further treatment may not do anything more.

DS has one about the size of a 10p right in the middle of his forehead. He's 2 1/2 and it is showing no signs of going! Our GP plus the paediatric Dr we saw at Chelsea and Westminster hospital both advised us to leave it as most do fade on their own. They said if it grew, became infected, interfered with bodily function or still remained when DS is older, they would remove it with laser treatment. Dr showed me a study which said 50% marks had gone by age 5, 70% by age 7 and almost all by age 10.

Oh and the remarks from other "adults" are shocking aren't they? Some mad old bag told me I had to go to church and pray for DS! Another said "I hope you're going to get that removed or he'll get bullied at school". I only ever lost it once when a security guard in Tesco said "what's wrong with him", completely out of the blue - I won't tell you my rsponse but some \lovely old lady hit the guard with her handbag for being so rude!!

Debs, I can't believe what a difference the surgery has made to him, comparing the 2 pics you wouldn't have known what it was.

I think some of the PCT's seem cautious/scared to deal with certain conditions and I hope you get funding for him even if it's part it's a start.

Wattinger - It's always the Pontipines. Yeah, some people just look at you like you've been beating your child and give you that 'yeah, right he's not fallen' look when you explain to them. Your DS's sounds the same as mine.

Hi Bellared
My ds2 had a huge one on the top of his head, he was very prem & it started to appear at about 8 weeks old while still in SCBU.
It gre to about the size of a tangerine, so we certainly got a few looks, it was not obvious that it was a birthmark & looked more like a huge growth.
I can remember one old cow lady following me around the supermarket staring at ds2's head. In the end i stopped dead in my tracks & just stared straight back about 2 inches from her face, she soon scuttled off but I was shaky as it was so out of character .

Any way, it ahs all gone now (he is 6) but, we had lots of problems along the way, the skin was very fragile & it bled often & became infected, needing IV antibiotics.

It wasn't until we were in hospital that the DR told us they bled easily.
This has meant that ds2 has a fair bit of scaring.
Luckily as he has a thick head of hair we can comb it over. But certainly something to watch out for & maybe discuss with the docs.

Hi Anon, the skin on it seems the same thickness as the rest it's just when he bangs it it goes and angry shade of purple then goes back to the usual shade of colour.

Hi Cat, thanks for posting, were the spots similar to burst blood vessels?

Hi Cat, I don't remember 1/2 pennies . I think I know what you mean anyway! . I love squiding squashy things too!