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?

Thank you. How does your child tolerate the GA?

Thank you. I think the main reason the NHS are treating it is because we were added to the waiting list 3 years ago when it was much darker and they’re happy to go ahead given that we’ve waited so long. I’m not sure if they were to assess it for the first time as it is now they’d be willing to treat.

This type of comment makes me really angry to be honest. I have a port wine stain on my face and was badly bullied at school. You would not believe what things have been said to me. It really affected my mental health growing up. My Mum mixed heaven and earth to get me private laser treatment before it was available on the NHS and it allowed me to live a normal life free from peoples comments.
Allowing someone to live with a disfigurement because to treat it ‘sends the wrong message’ can only be said by someone whose had zero experience of living with this type of thing.
OP the earlier the laser treatment is done the better the results are likely to be and your child won’t remember it.

Being seen as different isn't always a negative thing....

I has exactly the same thing. It faded when I was about five but as I got older - thirties - my skin I suppose got thinner and it started showing up when I was hot or cold or tired or excited. People used to comment mainly because it looked like I'd hurt myself. I had it lasered and it took less than 5 minutes. I would get it done because I assume any GA would be of very short duration - presumably because they don't want a small child moving about.

I’m sorry that you feel that way and that you were bullied. I think it very much depends on the severity of the mark. The OP made it sound like her child’s was not something that would be described as a ‘disfigurement’.

Personally, I wouldn’t. The more that society homogenises in appearance, the harder it is for anyone to look different. I think we would all be happier and healthier to accept that differences are a good thing.

Not the same I realise as not on the face, but DD has large strawberry marks on her shoulder/arm (over most of one shoulder and halfway down to elbow). They were incredibly noticeable at first and we wondered about treatment but didn't do it as we could see they were (slowly) getting better and felt it was also suggesting to her that it was a bad thing to have it. It gradually faded / reduced in height. In her late teens, it now looks more like a slight rash and feels smooth to the touch. She got the occasional comment when she was a small child from other children, but more interest than rudeness. It doesn't bother her at all now, she happily wears strappy or strapless tops and just says it's part of her. Having said that, she's perhaps not been a typical teenager in that she doesn't wear make-up / take selfies / post on social media, but she makes lots of effort in what she wears and with skin and hair products, so it's not as if she doesn't care how she looks. So we're glad we did nothing, but that doesn't mean having the treatment is wrong.

Not exactly the same but my daughter had a large haemangioma on her face. and also her body.

we were offered treatment when she was 6 months old, because it was affecting her facial movements. We accepted and she was in hospital for 2 days for propanol treatment, which she stayed on for about another 6 months. The birthmark reduced overnight practically and now cannot be seen (unless she is tired)

just wanted to give solidarity as a fellow major facial birthmark mum

*propranolol

I see. I think I would still go for it, or at least talk to the doctor, because if you decide not to do it you'll most likely come off the waiting list and probably won't get the opportunity to change your mind later.

No problem! It is so hard to decide! Sorry I realise my message was very direct and matter of fact, but it was so difficult for me to decide. It was the GA that worried me the most, but once we'd taken the plunge we found out that my little one was really good with the GA and just sleeps it off. There was 1 time that was tricky (woke up distressed and trying to pull all the monitoring cables off!!) but that was all... We have really turned the whole experience into a 'hospital adventure' and make a massive deal out of it, buy a gift every time to say well done, etc... They do still get nervous, it's not like it's something they jump for joy at doing so often, but they're definitely not scared or distressed and they look forward to the 1:1 time with me as I make each laser session into a special treat where we go to a café or eat out for dinner the day before etc!

Sad about your parents changing your appearance! I am very grateful I had extensive orthodontic work as a child. I am very very glad I wasn't left looking like a buck toothed vampire without that treatment. People can bang on about differences making you unique but it's not most people's lived experience. My children both had bad acne which a dermatologist swifly brought under control. I suppose on that view I should not have bothered and encouraged them to accept the extensive scarring they would have got without treatment as a mark of their special individual charm rather than selfishly letting them have clear healthy skin. In an ideal world everybody would be judged on character but this is not an ideal world and looks matter.

YANBU

Are they sure it will require GA? I know a little girl who had laser removal over the course of a few weeks as a toddler (18 months) without GA. Cases differ of course.

I really feel for you OP. I guess it depends on how noticeable you feel it is and how many laser sessions he might need?

My DD was born with a minor
facial deformity which was cosmetic in that it didn’t affect the function of anything. It wasn’t dramatic but it was clearly noticeable. We ended up scheduling surgery when she was 18 months to improve it. I had very similar dilemmas to you but in the end I decided I just had to do what I would have wanted my parents to do if I were in her shoes. And I felt that I would have wanted them to deal with it when I was too small to be bothered by it.

she is now almost 9 and although you can still see there is something unusual in that area it’s only
if you look closely or attention is drawn to it. She is happy that we dealt with it for her and is barely aware of it!

We would in an ideal world yes. As someone with a facial difference who has been stared and "whispered" about I don't want to have to be that person that makes that challange

No but sometimes it is

Society has never accepted difference. Yes, it would be great to have a kinder, more open minded approach. But people notice difference, and some are cruel about it.

In the past, people with physical disfigurement or autism or other traits that marked them off were routinely made to live utterly miserable lives, often shunned by the community, or institutionalised, or forced to live as beggars on the streets. Babies born with cleft lip or Downs Syndrome were sometimes left to die.

It's really easy to choose the path of heroic difference for other people, especially a small child who doesn't have the experience adults do of having some mark that sets them apart.

Have you looked at the changing faces website OP? They have lots of useful information there for people with facial differences

I can only comment on the GA side of this, if that’s a worry. My son had a few and it was so so calm. So calm and kind going in, relaxed. Zero after effects. One time he was wobbly on his feet for a while, but feeling fine and laughing. Bounced back like nothing. I was surprised

I’d get rid of it without a second thought.

Nevermind all the comments about “the message removing it would send” or “society homogenising” - your very young child shouldn’t have to be the one who gets used to make that point, however “worthy” it might seem to adults who will ultimately be unaffected.

A GA for a condition you say the vast majority of people won’t notice?

Just in case it becomes an issue... even though it never has been.

No way.

Really helpful to have an alternative, personal perspective. Thank you

That’s kind of you to say - thank you 🙏

Laser treatment for birthmarks is amazing, I was for many years a qualified laser nurse and part of my job was assisting doctors with this treatment. The results that I saw were all very good, especially with children, the earlier its done, the better the result. Immediately after treatment it is very bruised so looks awful but that doesn't last long. They leave a long gap between treatments because the fade is very gradual, if they have offered treatment then they clearly think its worth doing. Try one and wait for at least 6 months before you decide whether to go again.