Babies with haemangiomas/strawberry marks

[Belle]

Along the lines of Molly's thread about her little girl's feet, I'm posting this in the hope that parents of babies with haemangiomas (or 'strawberry' marks) will share experiences...

I know it's a very common thing - one in ten I think - and often without complication, plus that they disappear by ten at the latest. Our little boy has what's called a 'perineal' one - yup, on his bum - which makes it very complicated indeed as it can very easily ulcerate, given where it is, which means pain, bleeding and copious complicated dressings etc. It was originally misdiagnosed several times (thrush, nappy rash, an ulcer - including at King's A&E) and eventually we had to pay a dermatologist at Gt Ormond Street private practice to look at it and he instantly said what it was. It's mainly fine now but flares up if for example our little boy gets a tummy upset or like recently, had antibiotics and so had the runs which means it ulcerates. We have to go for regular check ups at Gt Ormond Street (thankfully they rerouted us back on to the NHS so not paying for those!). Anyway it's caused as a fair amount of distress though now thankfully it's more hassle than upsetting. But I know plenty of people have babies with them so wondered if anyone wanted to sh are (or PM me) their experiences...if there isn't one already maybe I'll take another leaf out of Molly's book and set up a yahoo group or similar. I've had really useful conversations with parents at the clinic we go to, and sometimes see babies around here with them and want to say 'my baby has one too...' but think people might think I'm a crazy lady!

[Fuschia]

yes, twin 1 has one on his shoulder

v. common in twins and prem babies apparently

it is already shrinking and flattening

we are lucky the place its in is not too awkward

[Belle]

Yes my baby was v slightly prem. Interestingly both his cousins have had them though the specialist said they're not hereditary.

[sanity girl]

my daughter has one under her eye, but it's under her skin so no problems with ulceration etc. It looks a bit like a swollen bruise, so I get pretty sick of people saying "cor what a shiner", or "oh dear, she must have had a nasty fall"...Now I just say "it's a birthmark" before they've even finished - probably a bit rude, but I'm fed up of explaining it!

She's being seen at the Great Ormond St dermatology clinic and they say that in 90% of cases they gradually disappear by the time they're 7. Fingers crossed...

[gufflings]

Hi Belle

I don't know if you're still interested in keeping this thread going but I was about to start one looking for people in the area with babies/children with hemangiomas when I found your post.

My daughter is almost 7 months old now and has two haemangiomas. She was induced 5 days early because I developed pre-eclampsia in the last 2 weeks of my pregnancy, but I guess that doesn't really constitute being premature. She has one 'raspberry' on the front of her left shin near her ankle and another larger (about 3cm in diameter) compound 'strawberry' on her right shoulder which makes her look like she's got a big bicep. We have thought about giving it googly eyes and calling it her shoulder pet, and on days when she's extra full of beans I call it her off button.

Jokes aside, however, I really worry about the birthmarks and when they'll go. We went for an outpatients appointment at GOSH back in April and were told to just apply Vaseline to prevent them drying out and cover them in the sun as it can bring more blood vessels to the surface of the skin. Neither has ulcerated (yet) - I really feel for you having to deal with one in such a delicate area of the body - and I think they've now both stopped growing. The raspberry is starting to involute: it's gone from livid red to a maroony colour, and when she's warm/hot it begins to look almost skin coloured.

But the strawberry is not doing anything, unfortunately. It's so big and raised and deep (I can actually see veins leading to it under her skin as she's very fair) that I can't imagine it ever going really.

What I wanted to know is does anyone out there have a baby/child with a compound hemangioma that has eventually disappeared of its own accord? GOSH didn't want to put my daughter on propranalol as her birthmarks aren't in prominent/'dangerous' places. I'm kind of glad as it means we don't have to endure repeated trips to the hospital to monitor her - we just go back for another check-up next year where they'll take photos, compare to this year's ones and reevaluate if necessary - but I'm desperate to hear happy stories about these blooming things going away without treatment.

Have tried not to feel sad for her (and me) this summer seeing little baby (and big) girls wearing cute little strappy summer tops and dresses. Then I give myself a figurative slap and snap out of it. I know it's not the end of the world, but I worry how she'll feel about her shoulder pet when she's bigger if it doesn't go.

Can anyone help/offer hope?

[Belle]

Hi there,

that's very interesting - as I too had pre eclampsia, and was due to be induced as my son's growth had pretty much stopped in the womb, but he came early of his own accord at 36 + 6 weeks.

I can offer hope now! My son's strawberry has gone down considerably since I last posted. It's still there - still a bit raised, still some colour, but most of the colour has gone. When I posted this thread my son was less than a year old - he's now 18 months. the contrast to where he was at 7 months (just to put in context of your daughter's age) is astonishing. Obviously they all go at different rates etc, but my understanding was that they do pretty much all disappear, it's just that some will take up to the age of 10, but that seems to be rare. If you're worried - and I do totally understand the feelings you have - why not ask for a second opinion? We were never offered the treatment you mention incidentally - just basically told to aim to heal any ulceration and keep a close eye on it. We now are on annual GOSH checkups - where for the first year we were seen every month or two. I know laser is an option but I think perhaps in more difficult places or for those which don't disappear.

Oh, also - think I mentioned above that my nephews both had one. The elder's has gone, the second, who is 3, has one on his tummy which has gone down recently quite a bit.

Whilst my son's in a 'difficult' place, in one way it's a lot easier than many in that it's not visible so we don't have to give the repeated explanations.

I think 7 months is still v young in strawberry terms, I know our doctors were still checking for it to have grown at that stage, so think it must be a positive thing your daughter's strawberry has stopped growing. But I'd def push for a second opinion rather than wait for the next GOSH appt if you have concerns.

[melbourne groover]

My daughter has one on her back hip just below the waist probably about 2.5cm wide by 2cm high. She is nearly 5 and it is fading nicely. It sort of started fading from the middle out so the middle of it is pretty much normal skin colour now and there is a kind of ring effect but definately disappearing. I am not completely sure as seem to have developed the memory capacity of a goldfish, but I think it didn't really start changing until she was around 2/3? It was very red when she was a baby but kind of soft pinky red now.

I just tell her it is her special mark, and we all have things that make us unique like freckles/moles etc (usually pointing out various things on self at this point...) and this is hers. She hardly ever mentions it but seems happy with the explanation.

I am not sure of the exact type as the midwives just said it was a strawberry birthmark, until I asked a dermatologist and she suggested it would go around 5 or so. (Obviously we are running a little late on that)

[ClareC]

Hi all,

My younger sister had one on her back hip when she was born, it did totally disappear. I remember as it went it was almost like a balloon being stretched, ie went much lighter and not as dense. Can't remember what age it totally went but I do remember it going from being very noticeable to barely noticeable by the time she was a few years old. Will ask my mum when I see her next.

[DrDom]

Hi there,

My 7 months old has one above her right eye, which caused quite alot of distress to my partner as for 4 months we had to keep pushing the local GP to get an appointment with the specialist at GOSH, which we eventually have had. Basically they can't give you any time-frame on when it will go down or fade away, it lightens at first and then stops growing and receeds. As it is right above her eye, there's nothing we can do in terms of covering it up and every child we meet just homes in on it (some adults reactions have been absolutely shocking too) and although we have come to terms with this we are dreading the day she gets old enough to cotton on, although have absolute faith she'll be a trooper.

I'd love to meet other parents or talk about this as it has to help. It would also be a help to her for when she gets a little older to know theres other children with this.

[gufflings]

Hiya

Good to hear a positive (almost) end to your strawberry tale, Belle. That's brilliant news that your son's has made such progress since your first post. Must make nappy changes a whole lot easier! Good to hear your nephews strawberry's are gone/on their way out too. I agree, it's very interesting that we both had pre-eclampsia. When I asked at GOSH what exactly haemangiomas are, the consultant said they're not really birthmarks, they're benign tumours/lesions, and that one current theory is that they're placental cells that embolize into the fetal tissue during gestation. She said if you were to take a cell sample from my daughter's haemangiomas and from my placenta (if we still had it - thank goodness we don't as that would just be weird) they would match.

Also interesting that you were told they're not hereditary as apparently my mum, her sister and my (maternal) nan's brother all had them. I was cursing that side of the family as they're also responsible for my (and my daughter's) fair skin and my allergies!

Thanks to MG and ClareC for the reassurance too. I guess a few years isn't long to wait in the big scheme of things.

DrDom, I'm more than happy to meet up and compare strawberries if you/your wife and your little one are up for it. I agree, it would good for the kids (and us) not to feel alone with these. They haven't noticed them yet, but it's only a matter of time. Like Belle, I've seen quite a few children around town with haemangiomas but have been too chicken to stop their parents to chat. Especially since my daughter's are on her limbs and can be covered, so I don't have to rebuff stupid comments and questions if I don't feel like it. We've had some corking remarks though - the worst actually from family.

[new mother]

Apropos skin marks, I'd like to raise everyone's awareness of "cafe au lait" marks. THese are pale brown - hence the name - in colour but, contrary to strawberry marks, if a child has many of these, it can unfortunately indicate some very serious illnesses.

http://en.wikipedia.org/wiki/Caf%C3%A9_au_lait_spot

Don't want to worry people unnecessarily, but if you find any of your child, they must be checked out and preferably by a specialist. GP should refer on seeing them.

OTOH, many many children have some - I was at school with girls who had a few - and of course they led to nothing, so PLEASE do not worry unnecessarily.

[Sandperson]

My daughter has a prominent one in the middle of her forehead about the size of a ?2 coin and very raised.

She cope pretty well with it now and we are undergoing a treatment programme of laser at St Thomas Hospital as we are worried that she may be stigmatized when she goes to school and we are hoping it will go before then. Laser only seems to offer an 80% reduction at best anyway and she has to have a short general every time which isn't nice.

It was very red before the treatments started and it has changed a fair amount. I an PM a picture if any of you want to see. I'm also sure we could meet up if anyone wants a hat about our experiences.