Daughters Hemangioma (with pic)

[HenleysMummy]

Hi everyone.

First time posting on this so please bear with me!

My 3 year old DD has a strawberry mark (hemangioma). It presented at about 3 weeks old and grew very big very quickly. She also has one on her back that appeared at the same time. The one on her back has vastly disappeared now and is nearly a flat light pink blemish.
Due to it being very near her eye when she was a tiny bub, I saw a paediatric dermatologist who put her on timolol drops which didn't do anything. She was then moved onto propranolol which did stop its growth. As she became bigger and her face grew, I decided to take her off the medication as I didn't want to medicate her over something cosmetic at such a young age, when there was no more worry about it going into her water line / eye.

We've always been so positive about her little 'strawberry' and it's never bothered her. Until now..

I'm starting to doubt myself as children in her preschool have been commenting on it in a negative way, asking her why she has it and calling her 'a baby with a spot.'

She's now telling me she doesn't like it and it's breaking my heart. Does anyone have any experience with these, and have they faded on their own? It's fed by quite a big vessel but I don't want to medicate her again at such a young age when there's no medical risk, I also don't want to remove something on her face without her consent at only 3 years old. But she's saying she doesn't like it anymore.

Do these things fade? Will it fade like the one on her back? Do I just keep everything in a positive light? To me it's part of her and I love it, but I don't want her confidence to take a dip at the tender age of 3.

Picture of my gorgeous girl below.

Thank you!

She's too old for the medication to work now.

Thank you so much, this is really helpful and I'm glad that it's not causing you any problems now. I can't imagine it was nice having being sent from pillar to post as a child and having your mum wanting to remove it.

That's what didn't sit right with me. Removing something from a small child's face for other people's appease! I'll book another appointment with the consultant and go from there but I'll really try and work on her confidence. I'll have a look to see if there are any books about.

Thanks for the reply, that's really helpful!

I was under the impression that the medication was to only stop the growth, not shrink it. So due to it now having stopped growing, I sort of came to that conclusion. I was considering other options available, but it doesn't look like there are any apart from being surgically removed which I don't think I'll do yet.

Do you have any experience with this then, does propranolol completely stop working for children my daughter's age?

Re the original pictures... its usually a privacy issue why people don't like whole face pictures posted. So you can remain anonymous. Lots of people post stuff they don't like discussing in real life.

My friends daughter was given it at an older age because although it stabilised as a baby, it started to grow again. It stopped the growth and it disappeared.

@HenleysMummy i have a mole on my face that is about the same size than your dd’s mark. I’ve always had it (or rather I don’t remember a time when I didn’t).

How you approach something like this is such a personal thing.
Ive had a dermatologist telling me it was ‘ugly’ (🤨🤨) but she is about the only one who ever commented on it that way!
For me, it’s part of myself so wouldn’t remove it.

Clearly, other people will be very self conscious about it.

But at her age, I’d start with teaching her how to deal with such comments. In
part because she (unfortunately) will have to deal with comments like this, with or Wo the mark.
Id also have a word with nursery/school re the comments. Not the least because those children needs to learn to not make comment on people like that!

Fwiw propranolol is a beta blocker with many side effects. I wouldn’t have wanted a young child on them for longer than necessary!! Even less so for cosmetic reasons (and when that stopping is something you’ve done with the approval/support of the consultant)

So I’m very much with you on that. I really don’t think you hound feel guilty of stopping it.

My DD had one on her back and we were told it would go away by the time she turned 3. She is now in her early teens and it is still there, but has faded so it is barely noticeable.

One of my Boys was born with a larger one across his forehead, eyelid and onto his cheek. Very dark and a bit angry looking, much of it faded away and he's now an adult with just the part on his forehead, still dark but narrower than it was. He never had medication or surgery for it and we just hoped it would fade and get smaller which it did.
I think a word with the preschool is in order, the children should be name calling due to this. Ds never had a problem as his teachers always nipped it in the bud if there were any remarks made.
Someone told him once it was an angel kiss.

I've used propranolol a fair few times over the last decade or so. In some infants it only stopped growth, but in most it helped it start shrinking/going paler rather earlier. Most guidelines only advise starting it within the first 12 months of life. There's very little evidence for it helping older, and I'm afraid by 3 the evidence is so poor that next to no one would prescribe. I'm sorry.

@nocoolnamesleft

Thank you, I thought as much. Do you know much about the intralesional bleomycin injection?

Sorry, no, that's bigger centres than us.

I don't think it's as easy as saying "give her confidence" unfortunately.

My dd was born with an obvious physical disability. We're members of a charity, and the subject of bullying/name calling/comments comes up frequently.

If you talk to adults with the same condition they're split between the ones who say "why on earth should it be a problem? If they say you have a funny hand, I say it's better than having a funny face like you. Never had a problem" and those who say "yes, people did comment, yes, it did effect my confidence."
Some of the latter ones would have said they were in the former group, until something happened like a change of school. So giving them confidence when they're small is no guarantee if things go wrong later.

Confidence can be encouraged, but it can't be forced.

At that age, the little ones are probably not trying to be nasty. They're probably a mixture of genuinely interested (I had a 4yo asking me about a scar on my face last weekend) and talking matter of factly.
With dd even now in her 20s she says it's one of the first thing people ask her when they meet her. But at 4yo they ask questions you wouldn't think of as an adult because they want to know.
I'm just remembering when I was in year R, there were two Joannes. I remember dm asking me which Joanne I was talking about, and I said "Joanne with the lump". Joanne had a bump on her eyebrow, and I wasn't saying it to be nasty, just to identify her. (she must have had it removed at some point, because she didn't have it later up the school, but I don't remember noticing it had gone). Children at that age do say things that as adults we cringe about. (I don't think it was ever mentioned at school as far as I can remember.)

So what I'd say is equip her with some things to say if others ask. "I was born with it" or "My skin made a funny mark, but one day it won't be there" may work well enough as it's factual enough for that age, you could try something like fairy kisses, but it may not go down very well in a couple of years time.

But I would go back to the dr and ask if there is anything to shrink it or remove it safely, or at any rate for reassurance that it will go because she's become aware of it and she'll probably have to cope with others asking about it while it's still there.
I would also ask the preschool to talk to them about differences and kind remarks etc.

My DC had two that developed as a baby. One was in her lip that gave her a distinct duck-beak look. The other was on her temple. Both were very pronounced and swollen-looking. Hospital dermatologist said they would eventually disappear of their own accord, which they did. It took years, though, but now I can’t remember when they actually disappeared.

My ds had one. We were referred to GOSH at around age 3, initially had timolol which had no impact. We then moved to laser treatment with local anaesthetic when he was 8. This improved the colour (faded). Then the following year he had a general anesthetic and went with a bigger laser and it flattened and disappeared after. You can see a slight mark if you go close up but essentially it is gone.
Really pleased we did this. DS too, he was starting to get fed up with people asking what it was. Earlier in the treatment path the hospital had given him advice on how to answer questions or comments about his birthmark which was very helpful for him.

My daughter has one on her back, which I appreciate is different. I say 'has'... she's 11 now and it has gone from being a raised, spongy 50p piece size, to flat and patchy. It's fading and has almost gone.

My dd has the remnants of a very large and prominant haemangioma that completely covered her nose. She was on propranolol at GOSH from six months (had to delay treatment so she could have hernia op first), for approximately a year. She didn't have any side effects.

Propranolol significantly shrunk the haemangioma and turned it from a violent purple red colour to a somewhat normal skin colour. This was all it could do, but it was a fantastic treatment and it would have been even more effective if treatment could have started earlier.

My dd was left with a very noticeably different, not really nose shaped nose so she had rhinoplasty to remove the excess fatty tissue that had grown to support the haemangioma. It was removed via the nostrils so only left a tiny visible scar.

Now at 9 years old she finally has a nose shaped nose, but it has very wrinkled, saggy skin and prominent red veins visible through the skin. It has been a long journey and it is potentially not over yet as she has had laser treatments, with not much effect, but there are still other treatments to try.

Dd is now of an age where we no longer decide things for her, and she does not want any more treatments or hospital visits for the moment, but if she changes her mind before she is 18, it is still an option.

It's easy for people whose birthmarks have faded or their children's birthmarks have faded to say..oh don't do it, it's only cosmetic. But they are adults saying this, and some haemangiomas do not fade and resolve.