Dealing with disfigurement in a child

[Bulletproofmum]

My daughter was very badly burned when she was a toddler. She has 50 % scarring all over her body. I'm lucky to have her.

Her face, hands, legs, arms, tummy were particularly bad. Fortunately she still has her features and hair. She has just undergone some plastic surgery to bring the hairline forward, straighten fingers (the scarring distorts them), thin her ear (rugby players). Most invasive though is that she currently has a skin expander in her neck. This is now the size of a goose egg and growing to provide skin to remove scarring on her cheek.

She is 4 1/2 years old and for the first time beginning to become aware that she looks different. This morning she was saying to me that children are teasing her about her 'grinchy' hands and asking her about her neck and that she doesn't like it. In my local area we are known and she doesn't get noticed so often. We are going on holiday on Saturday (Cornwall) and we will be around lots of different children.

At the moment she is the most confident, strong and happy child you could meet. I am worrying that these new environments will start to erode her her self confidence and don't know how to give her the tools to deal with it.

I have looked at advice on the burns websites and changing faces etc.

[saltnpepa]

It's cheesy to say but she has a mother who adores her and that will give her everything she needs for life.

[CorporateRockWhore]

Bulletproof I remember your thread. I'm so glad to hear your daughter is doing well, she has run through my mind a number of times.

[WeeClype]

I remember too, I even remember the thread title. Your post has always stuck in my mind.

Glad to hear your dd is doing well.

[Chloe01mum]

I also remember your thread, has it really been three years

So glad to hear how well you are both doing, she sounds amazing. Her and her extra head

[Bulletproofmum]

It has indeed been three years. She's lived more of her life with her scars than without. I guess it was a pretty memorable story!

Thanks for all our your kind words. Dd is incredibly strong. A truism that what doesn't kill you makes you stronger ... Hmm there's a song in there somewhere :)

[upyourninja]

Bulletproof I too remember your thread and have wondered how you are doing from time to time. I'm so glad to hear you sounding so full of hope for the future.

It sounds like you are coping marvellously. Do you think you could frame your daughter's surgeries as 'helping make her skin comfortable' (or any other adjective - stretchy, smooth, or putting her skin back the way it is) so there's no conflict between telling her she's beautiful and having the surgeries?

Wishing you all the happiness in the world

[Bulletproofmum]

Thanks for all your kind words. The holiday is going well. We are staying in a campsite with a central play area where he children all congregate. She was attracting a lot of attention on the first evening. She soon found some older girls to boss around and soon had them wrapped around her little finger (as she always does). I explained to the other children what it was and that it didn't hurt. I could hear her brothers fielding a lot of questions too: "yep, that's my sister, she got burned" casually said.

I stopped following her around this evening and let her get on with it. They all had a lovely day on the beach.

She has this amazing ability to touch everyone with her affection and confidence. I hope she never loses it

[Blu]

BulletProofMum, so pleased the hol is going well, and that your dd is doing so well. I too remember your other thread and only the other day I was thinking about you and wondering how your dd was.

I have a child with a noticeable difference and also severe scars from surgery. We tend to be very matter of fact, and as he grew I just made sure he had entry of things to be proud of , and we gave little head space to anyone with views we didn't respect. After all why would we worry about the words of someone whose views couldn't be respected?

She sounds great, you sound great , and so do her brothers.

Enjoy your hol.

[HerrenaHarridan]

Firstly I would like to echo the pp who said that language is important. "The surgery will help your skin be less tight and make it more comfortable as you grow"

As your dd grows she will sometimes prefer to cover it. Allow her the option but don't ever encourage it, not even for weddings or other photo heavy opportunities, take her lead.

Personally I find that it's the initial 'reveal' that is hard. Once someone/ a group has seen it I just kind of forget and move on

[Enjoyingmycoffee1981]

I also remember you bulletproof. 99.9999% of mumsnet washes over me. Your story has stayed with me and I will never forget it.

What an incredible woman you are, and tour daughter sounds just wonderful!

Around this age, even without anything that separates them from others, children do become more aware, less unflinchingly confident and more self conscious. So some of it will be age as well.

[TalcumPowder]

I remember you, too, Bulletproof, and I've often thought of you since that thread. I have no wisdom, only that you and all your children sound great. I have no fears for your daughter with such a strong supportive, loving family environment.

[mipmop]

Another person who remembers your thread, and is glad to hear that you're enjoying your holiday.
Take care.

[RedRosie]

Like Enjoyingmycoffee1981, I remember your thread and it stayed with me.

I have no advice for you from experience, and you seem to be managing brilliantly to me. Your beautiful girl is lucky in so many ways, not the least of which are you and her siblings.

[Bulletproofmum]

Gosh. So many people that remember me and my brave daughters story. I may post a separate update for those that remember and have wondered.

The holiday went well. The weather was good and spent most of it on the beach. Only one incident. Dd wanted to wear a bikini all week. Whilst queuing for a ice cream with her brothers a boy came up to them and said 'is this your sister? Her stomach is gross'. Her tummy is very badly scarred. I thin ds1(9) was. Ore upset than she was. But she did mention to exDH when he collected them yesterday. I guess I need to give my sons the tools to deal with it too (without lashing out)

I'm also having a bit of hassle with my mum. She is having her skin expander out and cheek reconstruction done on Wednesday. She may have to wear a pressure mask after the wound had healed. This could be for up to two years. When she had it on after the accident she had to wear a balaclava for a year. My mum will not let it drop that she can't start school wearing it and I should delay her start. This absolutely won't happen (she starts September and is very excited). But she is going on about how cruel the children will be and she'll 'be psychologically scarred for life'. I know my mum means well but it is draining and really pissing me off. I also believe she is wrong. Dd's amazing personality will shine through anything. She makes friends very easily. Any advice?

[TeaMakesItAllPossible]

Hi Bullet. Your daughter sounds wonderful - I too remember your thread.

Just tell your DM exactly that. She's looking forward to it. That you'll monitor it. And you're too tired to listen, you have made up your mind. I find my DM fusses hugely about things that worry her in the last couple of years. Being blunt and acknowledging her worries is the way to go. I guess the school is a familiar place for her as she has older brothers - and likewise many of the children will know her. The joy of two older brothers

Hope the op goes well on Wednesday.

[wheresthelight]

Hi bulletproof I am afraid I wasn't around for your original story but it sounds like dd is doing amazingly well.

I cam understand your mum's concern but as someone who works with kids I think you are doing the right thing in wending her to school in September irrespective of the pressure mask. I work with 7-10 year old a day one particular girl is heavily disabled, cannot walk but crawls everywhere or has her chair/walking frame. Her mum sends her to a mainstream school and from day 1 she was accepted without any comments. She was very worried about starting working with me as most of her extra curricular activities had been specifically designed for kids with disabilities and mine is mainstream, part of her disability effects her looks and her face is very distorted and her mum especially was quite worried about how the other children would react. I never made any direct reference to her and never singled her out as different. The kids never seemed to notice or acknowledge her differences and just accepted her as herself. It made me ridiculously proud of each and every one of them to be honest and I know the girl's mum cried when she came to see an event and saw how "normal" her dd was being treated by everyone.

Kids will ask questions because they are naturally inquisitive but once told that your dd got burnt and the mask is to help her skin get better they will ignore it andjust aaccept her for being minibullet. The more fuss people like your mum or exdh make about it the more people will stare/single her out as different.

Good luck with her op! Hope she recovers quickly and gets to enjoy the rest of the summer!

[JohnFarleysRuskin]

I remember your story and it's wonderful to hear how strong you, dd and the boys all are.
No advice I'm afraid but lots of admiration.

[bonzo77]

hi bulletproof. I also remember your original thread. Lovely to have an update on your DD.

It's not the same, but one of my DS's friends has a very bright haemangioma covering about 1/3 of her face. They are the same age as your DD, though they met 2 years ago at preschool, when things were easier. He asked about it, I explained it's her extra bit, some people get extra bits, like his own funny ear or daddy's lumps (lipomas). He just accepted it and never mentioned it, apart from once where he wanted one the same, and another time when he saw a stranger with a similar one. I definitely think giving her the info to pass on, and for her to feel confident about it is important. I don't know if giving her teacher the heads up on how to handle any questions might be useful.

[Bulletproofmum]

Thanks for sharing. I agree that children are very accepting and once they have got over the original surprise they will accept her for who she is.

I will be very glad to see the lump gone - op tomorrow.

[mipmop]

Best wishes for a great outcome tomorrow.

[Bulletproofmum]

Unfortunaty it hasn't gone well :(.

The skin hasn't taken and we're still I'm hospital. Sadly it means that the scarring will be worse than before. They will operate again on Wednesday and replace the dead skin with either her own graft or artificial skin. Will try again in the future :(

Hard being here. So many memories and challenging entertaining a bored four year d. She's happy in herself though and enjoying mummy time and all the attention

[mipmop]

Sorry to hear that.

[Cinnamon73]

OP, I'm sorry to hear that. Hope the op on Wednesday is more successful. I know it can be difficult to entertain a lively 4yo.