Infantile hemangioma on nipple

[user13842]

Evening! My little girl was born with an infantile hemangioma on her nipple. Doc said it would go away within a year but it has just grown with her and no signs of fading now at 13 months. I’ve got a GP appt for her but just wondering if anyone has any experience with this?

I’ve read that hemangiomas elsewhere are usually fine and can be left but can be problem on female nipples as can prevent breast growth or cause asymmetry and nipple distortion.

Hi Op. I have a DS, now 18, who developed 8 outer hemangioma at about 2 months. After a confluence of events, due to our GP and local hospitals lack of understanding, we were eventually referred to GOSH. I would advise you to ask your GP for a referral to a centre of excellence. This is said not to scare you, despite their appearance they do diminish over time, but to get the very best advice. I believe you can have photos sent to GOSH, and I know they publish guidance for GP’s. You’ll feel more assured with their level of expertise. Best of luck x

Thank you for your response. I’m definitely going to ask to be referred elsewhere having read about the potential impact of ones on nipples! The doctor I previously spoke to was very unbothered but all the reading I have since done highlights IHs on nipples as being one of the criteria for immediate referral to a specialist so as you say probably due to a lack of understanding from that doctor! I’m sure it will all be fine but just want to ensure people who know what they’re talking about are on board.

Hope all worked out for your DS.

Slightly surprised you weren't referred when she was much younger, for consideration of a trial of propranolol, given the location, but probably getting too old for that to work now.

I am annoyed at myself for not researching more sooner and pushing for something to be done. The doctor was just so confident of what it was and what it meant etc that I just monitored it as she advised. The doctor today also told me it would go away and I had to push to get her to contact pediatrics and ask them for a second opinion - she did say she’d never seen one on the nipple before so perhaps just rare and they assume they’re the same as other IHs.

Hopefully pediatrics won’t also just dismiss it. From what I’ve read it won’t just go away on it’s on accord and can have negative implications. Being a teenager is hard enough!!

I’ve never actually seen one on a nipple, but would consider it a “special location” hence why I would have tried propranolol. At this age that’s unlikely to work, so I suspect it’s plastic surgery you need an opinion from more than paeds.

Thank you for your advice.

Hmm. Yes, our Gp was absolutely certain DS’s was “necrotising”. Then he suffered several haemorrhages. On one memorable morning as the district nurse arrived as the blood hit the dining room ceiling.

He is fine now. Some have disappeared, he has a fist sized scar below his throat.

When we finally arrived at GOSH, we knew immediately we were in the right hands. Babies there had massive hemangioma on all parts of their bodies. Due to the number of externals we had to have him scanned in case any were internal, thankfully not. He is still an outpatient at GOSH and is eligible for cosmetic surgery on his scar until he’s 21.

we were made to feel hysterical by our GP and local hospital. I’m fairly certain they didn’t enjoy the condemnatory letter written to them by GOSH. It was awful.

Back you you. You're worried. She’s your baby. That’s enough to start banging the bars until you get to a specialist. Good luck x