Surgery for DS’s facial birthmark

[BeCalmFox]

Hi everyone

First time poster really looking for some views.

my DS (4) was born with a large red birthmark on his face. It was originally diagnosed as a port wine stain but after it faded significantly in his first year it was diagnosed instead as very extensive stork bites or salmon patches. It has continued to fade although at a much slower rate and, until now, hasn’t caused him any problems and other children haven’t mentioned it. It’s faint pink now and not immediately noticeable unless you spend a bit of time with him. It’s more noticeable when he’s cold or excited or upset etc. It is definitely still there though and I’m conscious of how perceptive and cruel other children can be. He starts school on august and we have just been given an NHS appointment to have it treated by laser. The procedure requires general anaesthetic and 10 days off nursery. It may also require repeated procedures depending on the skin’s reaction.

My DH and I are torn about what to do. On one hand we don’t want to put him through an operation requiring GA and a disruption to his life for something that is not medically necessary, massively noticeable and may continue to fade further.

On the other hand, I am concerned about him being bullied or treated differently because of it and this affecting his confidence. If we waited another few years, I’m concerned that some damage may have already been done in this respect. We may have a chance to just deal with it now and draw a line under it before school.

AIBU to put my DS through this procedure?

Having thought about your situation I wonder if you'd benefit from some advice from GT Ormond Street Dermatology team? They have links with the UK charity 'Birthmark Support Group' and I wonder if it'd be worth your while getting a second opinion from someone there if you are undecided? The birthmark support group have a Facebook page that you can connect with people on.

When they treat port wine stain birthmarks the aim isn't purely psycho-social ('cosmetic')... it is also to slow the growth of the blood vessels, which are continuously growing at some rate or other and may cause blebs, granulated tissue, swelling, bleeding etc. The laser is also needed to prevent glaucoma developing from the close proximity of the birthmark to the eye, if it is in the region of the eye (therefore also preventing blindness).

A second clinical opinion might help you to make up your mind as it sounds like the reason you're uncertain is because you're going down a PWS treatment pathway for a birthmark that was misdiagnosed? Maybe see what a second doctor would say, by trying to get in touch with someone at GOSH through the birthmark support group.

I read there's a 1 in 200,000 chance of death under a GA. There are other side effects too. I think I'd really consider how noticeable it actually is and if it's fading id probably leave it.

My son was born with an issue with his eye. When he was young people pointed it out frequently. My friend knew a 17 year old who was born with the same thing. She had it surgically fixed at 17 and wished her parents had done it years before. We had our sons fixed when he was 8 or 9 under general. We are very glad it was done. I'm a teacher. I know children are very cruel at times.

In the nicest possible way you might not notice it as it is just part of him. I have several north marks on my face that I don’t see when I look in the mirror, I only “see” them if I cover them with makeup and then it’s abnormal as they are not there. He might have more stares and comments from kids. The GA will just be light enough to keep him still and pain free. I would do if. Friends waited too long for their kids corrective eye surgery and it affected her lifelong

Also take into consideration having it done now may mean he can't go in the sun during summer time this year ? Also if there's a series of treatments from now until summer could be end up starting school with bruising being visible ?

This is possible.

We treated my son's facial hemangioma with propranolol when he was about 9 months old. It's practically invisible now.

Now when I look back at pictures of him as a baby when the mark was at its largest and most noticeable, I find it quite shocking. But I don't remember being particularly shocked by it at the time. It was just part of him, my beautiful baby.

The main reason we decided to treat it was because strangers commented on it a lot.

I'd let him have the op. As he gets older, kids get worse ime. I had numerous ops as a child for similar and the bullying was still bad. I can't imagine my life if I didn't have the surgery.

Thanks - that’s a really helpful suggestion