Hemangioma

[Funky1985]

Hi mums,
Does anyone have any experience of their child having a hemangioma and can tell me how it was treated or what happened to it?

My son is 1yr and over the last month a hemangioma has appeared on his face (just above his left eyebrow). It started as a tiny red dot and now is about the size of a raisin. The doctor tried to freeze it off but referred us to hospital at the same time. We went to the hospital yesterday and it was such a rubbish experience with nobody seeming to know what they were talking about or what we should do.

If it doesn't get any bigger it will start to regress and then eventually disappear but the doc at the hospital said that was unlikely and they often stay and keep growing :(

Any advice or personal experiences would be really appreciated.

Do you mean a strawberry birthmark or capillary haemangioma? If so they are normally harmless. They will treat them if they are for example obstructing vision, dd1 had 1 in her eye socket so it was treated.

They generally say they will go on their own by the time they start school.

My DS had a strawberry birthmark with a hemangioma underneath it. Started off as a tiny mark just left of centre between his eyebrows when he was born and grew to the size and shape of an egg by the time he was 4 months old. It went from his forehead down his nose. It wasn't quite obstructing his vision but there were concerns it could if left to grow.

We were told that birthmarks tend to grow rapidly between 3 months and 1 year and after that they start to slowly regress and fade.

D'S had treatment. He was put on Propranolol (beta blockers) and even after the first dose the tension started to reduce. He was on it for about a year and there was a marked difference in that time. He was taken off it after 9 months but the hemangioma started to grow again so another 3 months treatment got on top of it.

There was a downside though. One of the side effects is night terrors. DS had these badly, it really disrupted his sleep and was quite traumatic for us to cope with. He's 3.5yrs now and still has rubbish sleep although no longer has night terrors.

Our GP had no idea what treatment could be offered. We were referred to paediatrics initially and they hadn't seen anything like the size of DS birthmark before nor how rapidly it was growing. We are still under the care of an excellent paediatric dermatologist who treated DS.

Birthmarks do fade and swelling goes down but it can take time and it depends on whether you are bothered about the cosmetic appearance - taking time to reduce means it will be visible as it fades.

We weren't bothered about the cosmetic appearance - his wee red mark is just part of who he is. The hemangioma was a concern purely because of the size and potential to either affect the growth of his nose or eyes.

I looked for support from the Birthmark Association but nobody answered my emails and I gave up on them.

I ended up just googling birthmark treatments and once I knew Propranolol was offered I read up on that as well.

I'm happy to answer any questions if that would help.

Yes IkaBaar it is a capillary haemangioma and the doc said it will just go away by the time he is 7 but my worry is it will get bigger.

Oh Huntleybyelection bless your little boy, that all sounds quite traumatic for him :(

We aren't bothered by the mark but just worry about it growing larger. If it stays as it is and then eventually disappears then I won't be concerned. We have to wait now for him to have a scan, did your son have to have that?

I don't remember him having a scan - although sleep deprivation really did a number on my memory from that time though. Lots of prodding and checking the lumpnwas soft tissue though.

Have you seen a dermatologist?

We had no issue with the mark and tbh some swelling wasn't an issue either for us. Other people were horrid and some strangers did stare.

My FIL referred to it as "the deformity" and told DH that we needed to get rid of "the defect" on DS face. That wasn't nice to hear.

How long a wait have you had? I was told with a growing birthmark on a young child then referrals would be taken more quickly. I had to chase up initially (gp receptionist failure) but things progressed quickly from then.

I'm sure a lot of it is a blur! I think the doc just offered the scan because he didnt know what else to do to be honest!

No havent seen a derm, it hasnt even been mentioned.

I can't believe people in your own family were mean like that. It's not nice from strangers but when it is your family it's even harder to take. I'm sorry you had to go through that.

We had to wait 2 weeks for the hospital referral and I dont know when the scan will be yet.

We had a new development last night however... he must have caught the hemangioma, it bleed a little bit and fell off! Should I be worried? Will it just grow back?

Hi OP,
My dd has/had a nasal bridge haemangioma. It grew rapidly and eventually was the size of a large cherry tomato covering her whole nose.

She was treated with propranolol for around a year (with no side effects luckily) which stopped further expansion and gradually the capillary mass resolved itself.

However, as the haemangioma grew so aggressively the structure of the soft tissue also grew to support the haemangioma.
We were advised that this would not go away by itself and so dd had plastic surgery at 3.5yo to reduce the bulk.

My dd is 4yo now and her treatment is ongoing. Proposed next is laser treatment of some kind. The plastic surgery helped to gain a more nose shaped nose, but still the skin in that area is very different in appearance and is noticeable immediately.

My experience is that most health care professionals know very little about haemangiomas and can be quite unconcerned. We luckily got a referral to Great Ormand Street from a passing paediatric opthamologist who personally knew the relevant doctor at GOSH. Without that opthamologist the neonatal unit were not going to deal with the haemangioma at all!

Your doctor may be offering a scan because sometimes haemangiomas can be internal aswell and grow into organs thereby causing trouble.

If it grows rapidly and raises up from the skins surface you should ask for propranolol treatment. Without it my dd would still have a blood red huge clown nose.

Haemangiomas that are on the face but not impeding breathing or sight are still significant as far as I'm concerned.
Doctors may brush it off, saying it will resolve itself eventually, but sometimes they don't. A facial disfigurement is a major thing for anyone, let alone a child :(

To add: even with the disturbed sleep, I would advise trying propranolol for anyone who is offered it as an option. The difference in DS birthmark after even 1 dose was astounding.

We did have to have his blood pressure checked weekly (for first 3 or 4 months, then fortnightly then monthly) to make sure the Propranolol wasn't affecting that. But it's a wonder drug as far as I'm concerned.

Be aware: it's termed as off prescription as it's being used for reasons other than originally intended. But its still something I am happy we used.