Should I consider corrective surgery for my DS?

[Lillypond]

Some of you may know that my DS who is 3.9 yrs old has autism and was born with a craniofacial deformity.

When he was born we wern't told anything about the causes or treatment, just told that it was purely cosmetic and that it would be less noticeable when his hair grew. I was never told that the deformity had a name so I couldn't really find out much about it on my own. I admit that I didn't really ask many questions as it seemed really disloyal, like I was disappointed and complaining about the way he looked. I had PND which I think was probably caused by suppressing my feelings and not talking to anybody.

DS spent a long time laying/sitting down as a baby as he would scream if I put him on the floor. he wanted to be in his recliner chair all the time and had no interest in toys or people. I didn't know it at the time but his head shape was getting worse because he was constantly laying on it. I didn't notice this happening but I can see by old photos that it's actually worse now than it was at birth.

When DS was 2 I found out that the deformity could have been corrected by wearing a helmet, but it was too late as treatment had to be finished by 18 mths. So since then I have been full of guilt for for the deformity happening in the first place, for letting it get much worse by laying down all the time and for not getting the treatment when it was available. It's all I see when I look at him. I can't bath him or take him swimming because I can't bear to see his head with his hair wet.

There is a surgical procedure available that could completely correct my DS's head shape, but there is a cost. The risks involved are high for an operation that is considered to be cosmetic, it's very invasive (I can't bring myself to actually read what the surgeon does, but it's extreme) and his hair growth would be affected by scaring. I know all these things should have made my mind up but I can't stop thinking about it because it is the only option. I'm so bitter that it could have been corrected so easily but I wasn't told.

DS's deformity is considered severe and it's very noticeable and his doesn't hide it at all. His forhead protrudes further than his nose, his ears aren't in line, his head is wider form ear to ear than it is from forehead to crown and it doesn't look normal from any angle.

Can anyone understand how angry I am and how I would do anything to make this go away? I have had counselling about this but it didn't make me feel any better. I cannot stop comparing his head shape to other children and I worry so much about bullying when he's older. You might think that I'd be worrying less about his appearance since the autism DX but in actual fact it has made me think about it even more. There's not much I can do about the autism, but there is a procedure out there that can correct the deformity.

Is there anyone reading who can identify with the way I feel?

[doormat]

lillypond I think we all want to protect our little ones, I fear for my ds as he is growing up, I dont want him to be bullied etc but he has no deformity.

I think you can only do what is best for your ds, if that is surgery in your opinion, go for it

you have to weigh up the risks, for and against and decide the option which is right for you and your ds.

dont be angry with yourself as it really isnt your fault, the doctors, paeds, OT's (bugbear at the moment with me)should of really been explaining this to you at that time, you had enough to deal with.

hope all goes well
xxx

[DinoScareUs]

Lillypond, have you looked to see if there are any online support groups for parents of children with the same or similar problems?

I have found great support and information from the parents' websites relating to talipes (clubfoot) which my DS2 was born with. I changed his whole course of treatment on teh basis of what I found out from those groups. Try googling the exact name of the problem and see what you coem up with.

Good luck. I went through a lot of angst worrying about whether I was doing the right thing with DS2, so I have a tiny inkling of how it feels.

[aloha]

i really, really feel for you lillypond. i think dinosaur's advice is wonderful. what is your ds's condition called?

[SoBlue]

I think your angry with the wrong person, if anyone is to blame it was the medical profession for not informing you soon enough to make a difference. Its a hard call wether to correct it, maybe you could wait to decide until your ds expresses any unhappiness about the condition. If thats not to late to decide.

[aloha]

Lillypond, try here

[aloha]

It should link you to the UK craniofacial support groups.

[aloha]

Or here which is another one.

[Davros]

Lilypond, what a wonderful post. So well expressed, so touching and heartbreaking. After reading your post my first reaction was to have the surgery but I think following Dino's advice would be good and I'm sure we'll all be interested to hear how this progresses. I can't imagine how you must feel

[littleredcorvette]

Lillypond - does your son have Plagiocephally (a flat head due to the amount of time spent lying on his back)? My 3 year old ds has this and I also feel angry that I wasn't given much information about it when it was first diagnosed.

Although his Physio said that he needed to have plenty of 'tummy-time' he always hated being on his front - he would scream, cry and be sick. Nobody ever mentioned that by being on his back for long periods that it would/could cause this condition.

At his hospital appointment (Cranio-Facial department) we were told that as the bones hadn't fused together he wouldn't need a major operation in order to correct it. We were also told that his head shape would be less noticeable once his hair grew and, as he was discharged from that clinic after just the one appointment, we were very happy with the diagnosis at the time.

Just like your ds, his head shape is now more noticeable than before and he also has a large forehead - although one consultant did kindly point out that "so has his mum"!

As doormat says, you can only do what is best for your ds.

[Lillypond]

Thank you all so much. I didn't realise how much I need to talk about this until I started typing, and I was so afraid that you'd all think I was sick to consider surgery.

Doormat - I know what you mean. Who'd be a mother, eh? Even if DS was NT and physically perfect I'd probably still kill myself with worry over him.

LittleRedCorvette - yes, my DS has plagiocephaly. I always avoid saying the name because I know some parents of children with craniosynostosis (suture fusion) feel that the term has been hijacked from them. It's a horrible word anyway. I remember your intro post where you mentioned your DS had plagio and quite a few other DX's IIRC. I wanted to ask you then if it was cranio or positional but felt very shallow just picking this out for my own means. I'm very glad you've seen this though, at last I've found someone who is in England who knows what plagio is (I'm assuming you're in England). What cranio-facial unit were you seen at? - we went to the Radcliffe in Oxford.

Aloha - thank you so much for taking the time to post the links. Unfortunately they are for the suture fusion type of plagio and not the deformational type. Having said that, one of the links you posted for 'Headlines' were a wonderful source of support and information for me when DS was undergoing DX. Without their help I never would have been able to convince my GP to refer DS to the Radcliffe.

Davros - I'm touched by your post. I was especially worried that I would offend any parents of children with autism, by placing so much emphasis on DS's appearance rather than his behaviour. I can't really justify why I do that. It has crossed my mind that the shape of DS's head has caused some sort of neurological impairment, but I don't think I actually believe this in reality.

Soblue - I don't really know whether the surgery would always be available regardless of DS's age. I think the risk factors increase with age, but not sure. It's almost impossible to find any information on cranial vault reconstruction. I doubt whether DS could have it on the NHS. DS's consultant thinks that the deformity will improve as he grows, but he keeps moving the goalposts. Before our first visit we were sent information to say that it would have corrected spontaneously by 18mths. Then when he was 2 yrs old they said wiat till he's 5. Now he's almost 4 and it's still classed as severe they are saying wait until he's 18 yrs old. I think they are just stalling me and hoping that I'll go away and forget about it happy in the knowledge that it will be alright in the end.

Dino - There is only one website that I've found that is dedicated to parents of children with untreated deformational plagio. To say it's depressing is an understatement. Most of the posters are American and alot of the chat is about sueing Paed's. for advising them not to use a helmet. Many of the members post pictures of their children showing their deformities at their worst which is something that I could never do. I would say that most of the photos show mild asymmetry, a few moderate but I haven't seen any like DS. They really don't understand about the NHS and funding, waiting lists and going private.

Well this is a depressing post, isn't it? I do feel like a weight has been lifted off my shoulders for typing this out though.

[Davros]

I'm pleased that posting seems to have helped you, if only to think things through more for yourself, as if you need to think even more!
I totally understand about worrying how a child with ASD or other SNs LOOKS. That is why I always dress DS nicely, have his hair cut, cut his nails etc. He is strange enough without wearing dreadful clothes etc "because it doesn't matter". Not quite the same as your issue, I do realise. There is a craniofacial unit at UCH isn't there? I don't know anything about it, I've just seen the signs giving directions around the hospital. Is it worth getting a referral there or is the one you're at in Oxford just as good? A friend has told me about a website/support group before for children and their families who "look different", I'll dig it out, you never know, it might be useful.

[maddiemosthorrid]

My son has facial deformities{mid facial hypoplasia and flat nasal bridge) and we have been told{by NHS hospital} that surgery would not be considered until he is out of his teens.

In a way I am glad that we can wait that long as I would like my son to be invovled in the decision making process(he is 7 and autistic}.

I really feel for you as it is a very hard decision to make.

My son had some other birth defects corrected at the age of one(the need was medical,although cosmetic improvement was also involved} He was one of the unlucky few that suffered breathing difficluties under anaesthetic. He has had a subsequent GA and been fine.
I know the risks of anaesthetic are small but they are still there.

If you could get the operation privately, how much would it cost?
Perhaps find that out first.

It is horrible, I know that I feel like it is yet another problem for my ds to deal with.

[littleredcorvette]

Hello again, Lillypond
Yes, we do live in England and our ds was seen at the Cranio-Facial dept of the Childrens' Hospital in Birmingham. I wouldn't have minded if you had asked me about ds's condition after my intro post and, if you want to discuss this further, feel free to CAT me

In fact it was his OT (at Good Hope Hospital, Sutton Coldfield) who first noticed it, although I've lost count of the number of professionals that have since asked "has his head always been that shape?".

As his genetic condition is very rare, the last time he was admitted to the Childrens' Hospital he was visited by many doctors and students, with my consent of course. I was nearly in tears though after one doctor listed ds's facial features to his medical students - flat head, large forehead, flat nose, ears lower than normal. I nearly shouted out 'that's my son you're describing, not some sort of monster'.

I noticed a couple of months ago, that in the Babies R Us Catalogue they are selling the Sleep Curve mattress which says that it helps to avoid 'Misshapen Head' syndrome.

Further details can be found at: www.sleepcurve.co.uk/

Although it's too late for me and you, I think that all mums-to-be should be told about this condition because I had never heard about it until it happened to my son.

[Lillypond]

Davros - what's UCH? It's probably something really obvious, but I can't think what it stands for. When we were referred there were only 4 units across England that could offer multi-discipliniary assessment. Alder Hay (Liverpool), GOSH, Birmingham and the Radcliffe. We're in London, but the Radcliffe is less of a hassle to get to and I was told that the staff are lovely there (which they are ). It ended up being a good choice because there was a SALT at the asmt who picked up on DS's language issues and got him reffered. I thought she was a complete bitch at the time as she was so negative about DS but now I wonder if she guessed he was autistic and was trying to impress upon my how important it was for him to get therapy. The other good thing about the hospital is that they have a psychologist at the asmt who you can chat to afterwards about how you feel. I just wish it was at my local hospital as I can't really make weekly trips to Oxford. I'd be interested in that website if you can find the addy. Thanks

Maddie - sorry to hear about your DS1. I'm glad that he can have the surgery when he's older though. Were his other birth defects part of a syndrome? The anaesthetic is a risk but there are so many other risks with this type of surgery, as the brain has to be handled. I have no idea how they reshape the bone though. The costs involved with going private are probably mind blowing. I only know of people in the US who have had this operation and it has been covered by insurance. It would be years before we could afford it though. It makes me so angry because there is the expertise on the NHS but no-body will discuss it with me because it's considered taboo to perform a high risk operation for cosmetic purposes. If a surgeon could tell me exactly what the risks are, if the operation could be performed at any age and what the costs involved would be I could make a decision about whether to pursue it or not. I think I'll get back in touch with the unit and try to make a private appt with the surgeon. Hopefull if I'm paying he'll feel obliged to give me the facts.

LRC - about what they said about your DS. That's so callous. At a GP appt a student asked if he could feel DS's head and then turned to the GP and laughed and said 'yuk'. That was a real low point . I think there should definetly be alot more awareness about plagio, and health professionals should be looking out for children who are at risk of developing it. I think plagio is quite common in babies (I see it all the time now) but it's normally gone by the time they reach 12 - 18 months. DS's consultant told us that when it persists it's normally an indication that the child has SN's. If the child is mobile and not putting pressure on their heads constantly from 12 - 18 months (when cranial growth is still fairly rapid) the deformity does improve.

When was your DS last seen at Birmingham? My DS was last seen in April when he was disharged. I reluctantly agreed to this at the time but I've now contacted them again to ask for him to continue with his yearly asmt's.

[MeerkatsUnite]

UCH stands for University College Hospital.

[Davros]

Cut & pasted from an info sheet:
"Changing Faces", an organisation for children who are 'visibly' different. 1 & 2 Junction Mews, London W2 1PN. Tel 020 7706 4232, fax 020 7706 4234, email [email protected]
Sorry to stick my oar in with UCH, I know NOTHING about this issue and had just seen the signs around the area, if you're happy where you are then stick with them.

[Saker]

Lillypond - I can't add anything to the advice posted already but I wanted to say I really do feel for you and I don't think you should blame yourself in anyway at all either for what has happened or about how you feel. I can totally see how you feel that his autism might make you feel more that you want to do something than if he wasn't autistic.

[Lillypond]

Meerkats - Of course, why didn't I think of that. Thank you

Davros - Thanks for the info. You wern't sticking your oar in. I'm not particularly happy with DS's unit but it probably is the best available. The staff are nice and DS's consultant has an excellent reputation. I really wish he would discuss surgery. If he agreed to operate I wouldn't even need to consider my answer. I've seen some of the children he's operated on for craniosynostosis and his work is remarkable. I'm going to ask to see DS's measurements at his future asmt's, so I can prove to them that the asymmetry is not improving. I'm hoping that surgery techniques will improve in the next few years to reduce the risks, and the NHS might make the operation available for children like DS.

Saker - I do blame myself and I think I always will. Each time I look at him I see the deformity and I know that if I had looked into it more then it could have been corrected. I'm angry with the NHS and with myself. I'm his mum and it was my job to look after him. I look at other children's heads and think 'how come their mum's got it right, and I got it so wrong'. My biggest fear is that I will see a child wearing one of these hemets, knowing that I only found out the information too late and their mums were smart enough to look into it when it could make a difference. All this hurts so, so much. I do feel even more sad about this since the autism DX. I feel like 'what next?' 'What other horrible discoveries are waiting for me? It is important to me that DS looks nice. I have been patronised and put down by a few doctors for that. One told me to repeat the words 'looks aren't everything' as a mantra. I read threads on here about baby modelling and see the photo's in member profiles and think 'how come they're allowed to be proud of their DC but I'm not allowed to be bitter about an unnecessary, easily solved deformity that my son can never hide as it's on his head. Short of having an afro he can never hide this. You can still see the deformity when he's wearing a baseball cap. I am so bitter.

I am so relieved that no-one has posted anything unkind on here. I thought this thread would either be ignored or I would get comments like 'I would never put my child through surgery just to make them look normal'. Although writing these things down has made me really emothional it is helping as I can't talk to anyone about this in RL.

[jabberwitchy]

Lillypond, I can really sympathisize with what you are going through. Ds was breech for a very, very long time with the result that he had a very noticeable scaphiocepaly (a form of plagio) at birth. The doctors didn't seem that interested in the elongation only that one side was a little flatter. At least since the ped mentioned the flat side and helmets, I was able to look into it a bit. We did some positional things that helped, but I can still see some differences that I hope won't be as noticeable when he has more hair. During it all, I fretted and moaned and no one else seemed to think it was as big of a deal. You are certainly justified in considering surgery and I would think that done sooner rather than later is better, yes?

I'm so glad you decided to talk about, it helps tremendously. I wish I had known about MN when ds was a newborn.

[Lillypond]

Hi Jabberwitchy

Isn't it amazing how these medical words just roll off our tongues now?

How old is your DS now?

[jabberwitchy]

He's two. I find myself obsessively feeling of his head, was doing it just a few days ago in a panic that something was changing. I know that helmets are mainly recommended before 18 months, but since he is still little is it an option at all?

[Lillypond]

It may still be an option for you. I know they have increased the age range. Have you heard of Dr. Blecher, a german cranio-facial surgeon who treats children with helmet therapy. He's a nice guy and will look at photos of your DS if you send them to him by email.

[jabberwitchy]

Dh was adamantly opposed to the helmet I really wish we had but everyone says I'm the only one who really sees it. I kept telling dh, "male pattern baldness runs in my family, if he wants to shave his head later he should be able to!" Some people thought I was being funny or silly, but I am/was totally serious.

[Lillypond]

Jabberwitchy I'm probably the worst person to give advice on this as I am soooo biased. If I were you I would look into at least - but you'll have to be quick as you haven't got much time left. It may be too late already and waiting lists can be long.

I am quite sure that my DS's head did change shape between 24 and 36 months. It's still severe but it was v. severe at your DS's age. His head was completely flat from his right ear and there was a huge bulge by his left ear. So we have seen some improvement. Our problem is that cranial growth is so slow now that any improvements are going to be in mm, whereas we need 4-5 cm's of improvement. Also my DS has a very large flat area on his crown. Well it's more of a dent actually and this is what makes his forehead bulge as the contents of his cranium have actually shifted forwards. However we are still being told to expect more improvements up until he is 18 years old, but to understand that any changes will be minor ones at this age.

Whatever decsion you make I'm sure it will be the right one for your DS. If it isn't that severe it probably won't matter much either way.

Good luck

[jabberwitchy]

It sounds like surgery is really the thing for you, then. I guess you always have to weigh the risk vs benefits and I don't know about all that, but as a mother who has been there, I would probably do it or at least consider it quite seriously.