Haemangioma/propranolol

[aa10355]

Hi

my little one is 13 weeks with a huge deep haemangioma near her ear/jaw. They have decided to prescribe us propranolol but I’m nervous to give this medicine to such a young baby. Can anyone tell me about their experiences please? Need some positivity as I’m stressed just looking at it on my baby :(

Hi OP,
I have extensive experience in this.
my little girl was born blemish free. By the time she was 2 weeks old I noticed a scratch under her waterline.
this grew and grew very quickly to the size of a large garden pea. As it was near her waterline and had the potential to grow into her eye, we started propranolol under GOSH.

propranolol stemmed the growth and even perhaps refused it by maybe 10-20%. She was on it for a year and a half. Side effects she had were sleepy, and cold hands and feet for the first few weeks. Aside from that she was absolutely fine. Liquid propranolol can be quite hard to get so make sure you put the repeat script in early.

by the time she was 18 months, the propranolol wasn't doing anything at all. In fact, it had started to grow again. They increased the dose. Nothing happened. Most hemangiomas do go away on their own by the time the child is in junior school, however Hemangiomas with many blood vessels surrounding it and feeding it, makes the chances lesser.

my daughter is 4. Nearly 5. Just before her 4th birthday last year she started to ask why she had her strawberry and that she didn't like it. I spent months trying to reason with her but she hated it. People would stare and ask what she did to her face and I saw the once proud 'that's my strawberry!' Fading.

I began to look around for a surgeon to remove it. I spent months researching. I didn't want a dermatologist surgeon, I wanted a paediatric plastic surgeon. I found Mr Thorburn at the Manor hospital in Oxford. He agreed pretty quickly that the birth mark probably wouldn't ever go away. Explained the risks vs benefits and I decided, as difficult as it was, to book and pay for my daughter to have her mark operated on. Of course it leaves a scar, but it's much less angry than the mark.

she is 5 months on.

I've name changed for this for obvious reasons, but I will include some photos of her mark at its worst, and what it's like now, 5 months after removal.

it has been an absolute god send. Her confidence is sky high. She and I didn't worry about her starting school, getting picked on, ultimately getting it removed due to bullying and then getting bullied about that. I know surgery isn't for everyone but it's the best thing I could have done for her and I wish I did it earlier.

propranolol doesn't often if ever make it disappear. It will stem the growth. I also had timolol drops but they didn't make a difference.

here's my little Henley, as a baby with the mark as big as it got. Here is her now, with a flat, slightly pink blemish scar.

good luck and I'm more than happy to PM you if you like x

Here's my little Henley, a before and after.

and yes I do like unique names before anyone comes at me!

Ah sorry - Mr Throrbun was a paediatric plastic surgeon specialising in facial trauma.

just for clarity.
he is absolutely incredible. Didn't have any resistance to the idea. Highly recommend. He's changed my girls life

Thank you so much @JustForTheHemangiomaThread

Your little girl is gorgeous!

My baby’s haemangioma is what they call a deep one so it’s under the skin and not sitting on the skin like your daughter. It’s only got a few red dots on it but after an ultrasound it was confirmed to be a haemangioma. They also possibly want to do an MRI to see how deep it does go. It’s all a lot to sink in. I’m feeling more confident to start her on the medicine tonight. I’ve read that they are meant to monitor babies that start the medicine for a few hours in hospital but we weren’t offered that. I will just keep a close eye on her tonight.

Yes we weren't monitored we just started a dose at home and it was absolutely fine. DD also has one deep under the skin on her back at the top between her shoulder blades. That one's 85% gone :)

Yes I have two daughters with harmangiomas. The older one had a large one on her forehead - very pronounced. This was a number of years ago now before propanolol was used regularly so she did not take it. We were told it would go away - it didn’t and she ended up having it surgically removed which has left her with a scar on her forehead. My other daughter had one on her eye - it began to grow so large that her eye would not open by the age of 4 months. She was given propanolol and it went completely within about 6 months. No issue now at all. It is brilliant and I wish my elder daughter had been given the chance to take it. I would have no hesitation in recommending it.

Just had to say, your little girl is absolutely beautiful

Very interesting reading about your experience @JustForTheHemangiomaThread. I was literally just looking up ways to get a strawberry mark removed this week.
My little one is four, just started school and has one on their facial area.
I always said that I would get it removed if it hadn’t gone by the time they started school.
all the research I’ve seen so far talks about laser removal - do you mind sharing the process for your daughters removal?
Also, would you be able to share a rough estimate of cost please?

Of course!

I saw a few consultants before I felt happy with having it removed. But all 3 consultants said the same thing. Laser will remove the pigment of the Hemangioma, but depending on how much skin and how big the mark is, if it's not flat and protruding it won't make the skin disappear. He showed me photos of previous laser work as some parents do choose laser as it's less invasive and it leaves a sort of skin tag like sack behind, sort of like a burst blister. I personally didn't want this.
steroid injections are also an option but will need a few rounds.

I chose surgical removal so get it done in one go. It was performed under GA, took about 30 minutes. Mr Thorburns technique was to slightly scallop the edges, as he said removing it in a straight line (a neater scar) could possibly lead to dragging of the eye in the future, so slightly scalloping the edges would avoid that.

it's healed remarkably. She had a few stitches and glue which disappeared on their own. I will find some photos from after and during healing and will post back in just a moment.

cost was just £3,500 which included absolutely everything including antibiotics, follow up, and a silicone healing gel. Will pop back shortly with photos

Thank you so much, that's such a lovely thing to say ❤️

Right sorry for the delay was on school run, @pinkcow123but back as promised! Here's a little timeline of healing.
she had surgery mid April this year for context.

Photo 1 - taken a week before the OP so this is the size we were dealing with.
photo 2 - straight out of theatre
photo 3 - dressings off, 1 week later. You can see the sort of scalloped edges here that I mentioned earlier
photo 4 - 2 weeks post op, this is when it was scabbing (and almost looked worse than earlier but was part of healing)
photo 5 - 1 month post op.

the photo I posted up thread is a recent photo, that was taken in the last couple of weeks, so that's where we are with healing.
hope this helps! I wouldn't usually post pictures of DD but I've name changed so I can't be linked, and it's genuinely changed her life so I'm happy to share!

Ah bollocks, they haven't posted in order at all

but you get the drift :)

My DD has/had a nasal bridge hemangioma. She had propranolol under gosh, this was 10 years ago.

We had to go in for any increase in dose, but maybe that's deemed not necessary anymore.

She also had a hernia and was premature (30weeks) so had to wait until after hernia repair to start propranolol, as it was so fast growing those lost months probably made a difference and her hemangioma didn't disappear after treatment.

It definitely stopped growth and even shrunk it somewhat. The colour also dulled down from bright shiny red to skin colour with dark shadowing underneath. She had no side effects whatsoever from medication.

Unfortunately as the hemangioma was so fast growing and large, it left behind a mass of tissue and veins that needed plastic surgery.

She's since had a few pulsed dye laser treatments as well, but as these haven't had much effect we are currently waiting for a fractional laser consultation or, back to more plastic surgery.

@JustForTheHemangiomaThreadthank you so much for sharing!
She is such a little cutie!!

I was sceptical about laser because it said you needed more than one session, but also young children would need GA!
but I couldn’t imagine putting her under GA more than once for the same thing that could be done with just one!

it’s so hard, because the strawberry mark feels like a part of her now and she’s not bothered by it. But I know children can be cruel!

Did you need to travel for the consultant you chose?

Did it require an overnight stay?

I'm in Surrey, Mr Thorburn (after heaps of research I found someone I was happy with) is at the Manor Hospital at Nuffield in Oxfordshire.

she was admitted in the morning at 7, she was given a premed (Valium I think) at 7.30, she was down in theatre for 8.30. Back in the room with her for 10 after she'd woken up. She had some lunch (was starving at this point!) we were home for 1pm-ish. I went down to theatre with her and the premed took away any anxiety which was good. So no traumatising events happened trying to get a cannula in. They gave her gas, I quickly kissed her and then got taken away. It's never nice to see if course but it was genuinely okay.

had a follow up call the next day, she was seen in clinic in May, and she will be seen in October for a final once over with the view of being discharged.

i thought long and hard about it, but what I didn't want to happen is if she goes to school, gets picked on, gets it removed, and then gets picked on. But it's such a hard decision to make and any decision you make will be the correct one.

Mr Thorburn is fantastic with children and is armed with stickers and wears very loud socks and ties to make everything seem less clinical. I knew immediately after the first consultation that he was the right person to do this.

Henley needed calpol for 2 days, but aside from that she was fine! She had a very small black eye bruise for a few days but it was very small. If I remember correctly she went back to preschool with just the sterristrips on and once they fell off she was good to go!

https://www.nuffieldhealth.com/consultants/mr-guy-thorburn

Hi OP!
I know this was a couple of months ago you posted; but wondered how your little one is doing?
My son has his first GOSH appt tomorrow for a deep IH too- his is located on the left side of his nostril and I think we will also be offered the same treatment. Obviously the night before mum nerves are kicking in and I’m really anxious!

thanks for all the other comments on this post, really interesting reading your experiences too!
all the best to everyone X