To let my daughter have surgery?

[Celestia26]

A bit of background first.......

My daughter is 3 years old and was born with a genetic congenital condition affecting the growth of her facial bones.
I suffer from the same condition and both of us have had many previous surgeries to correct it.

At a routine appointment last week, a new surgeon recommended that my daughter have surgery on her mouth as her speech is very poor despite intensive speech therapy.

A previous (equally qualified) surgeon a few months ago said that the issue with her speech can be corrected with therapy, but it may take years. Also, there is a chance the therapy may not work and she will need surgery in the future.

No one can agree! I usually go with whatever the surgeon recommends, but because two of them are disagreeing, they are asking us (husband and I) to make the decision.

My husband is deferring to me with regards to what we do. Given that I suffer from the same condition as my daughter, he thinks I am the best one to decide!

What do I decide? Both of these surgeons are specialists. There is no option for a second opinion.

The surgeon who has advised the surgery has said she will repair another part of my daughters face at the same time, so that it isn't considered a 'waste of time if it doesn't work'.

The only downside to the surgery is that it may not work. So my daughter may just end up no worse than she was before, but with the added bonus of having another part of her face repaired.

The surgery will take about 6 hours, but will increase to 8 hours to do the additional surgery.

They want us to make the final decision, and my husbands reluctance to decide means it is my decision.

Please tell me what you would do if it was your child??

What’s your gut saying?

If the only downside/risk (other than the normal risks associated with surgery of course) is that it might not work but that a repair that will need to be made in the future anyway will happen no then I would probably go with surgery. That's easy for me to say though as it's not my child.

Personally if it was me, as she is so young and won't remember much if any of it, if it has a good chance of improving her quality of life I would probably go for it.

Not the same but similar, both myself and my mum have a turned eye. It can sometimes be fixed with physiotherapy along but we both had surgery young and didn't have to suffer wearing eye patches, being the kid with the wonky eyes etc.

I don't remember anything about the surgery but my eyes are straight now and I'm not traumatised in the slightest.

I feel like we should do it. But it's 8 hours of surgery on a 3 year old. If anything happens to her I will feel responsible. Especially if there is no guarantee it will work.

I would say timing wise it's probabky more convenient now because of not being at school. Plus it sounds like she will probably need surgery anyway .

Speech therapy services can be hit and miss so if they can be reduced in need or the need removed altogether then that's a positive.

However your the only one who knows the pain involved and whether the outcome us really worth it.

Sorry you have such a difficult choice to make

This is not fair. Your DH needs to help with this. He needs to discuss with you pros and cons, do research if possible. It’s not fair to make it your decision. You need to do this as a team.

Good luck Celestia whatever you decide. I'd probably go for the op as it seems there are no reasons not to. But whatever you decide will be in the best interests of your dd.

I would do the surgery, but that’s based on my experience of SALT.

If she’s going to need years of therapy without the surgery, what impact will that have on her socially and academically?

My DS had 4 years of NHS SALT with very little progress, we ended up spending thousands of our savings to pay for private SALT as his speech was having a huge effect on his confidence both socially and academically.

If they can do another repair at the same time, I would go for it and try and see any improvement they manage as a bonus to help reduce the amount of therapy she needs.

Surgery inherently has risk. Certain factors make it more risky.
From what you say, she may well need this surgery in the future anyway?
Does this operation have a falling rate of success as she ages? Say if it was it fixed now it would be more likely to succeed that if she was 5 / 7 / 22 etc.
Also I'm assuming this extra fix, is a cosmetic feature? I don't have children, but would it better for this to be repaired at 3 than when's she older and more aware, with potentially other children commenting?

Don't focus on the length of time the surgery will take because if her life depended on it, you wouldn't hesitate.

Yes there is a risk it may not help the speech but what % is that risk? All surgery carries a risk but in this case, they can also help with some of the facial concerns. I agree with the previous poster that your little won't remember it so definitely worth thinking about.

nickylou Yes you are right, the second surgery is cosmetic and wouldn't be done if it weren't for the another surgery to correct her speech.

I do think the cosmetic surgery will help her confidence with starting school and social interactions, but the risk of an 8 hour surgery worries me!

*other not another

If the second surgery wasn't done would you still consider having the first? If so (and it sounds sensible as the alternative appears to be unclear speech for several years), then the additional risk is two further hours of anaesthetic. I know nothing about anaesthetic, but I'd have thought the risk factor in a six hour surgery would probably be equal to that of an eight hour surgery.

This is such a hard decision (sorry not very helpful I know).

As you also have this condition what would you have liked your mum to do in this situation if it had arisen when you were a toddler? That is how I would probably make the decision in your shoes.

There seems to be lots of positives to having the surgery, especially as pps have written about the mixed outcomes of SALT alone. The cosmetic side would also help her confidence in the future too, and she won't remember it. However I do understand your concerns as a parent over her having surgery that's not crucial. Good luck!

I’d go ahead with the surgery.

What a difficult choice op. I think in your place I would probably go for the surgery, the timing is good in terms of school and even if her speech isn’t improved the the additional surgery is helpful.
Has your surgeon done many similar surgeries ? Would she need two surgeries if you don’t do the addional one now ?
Agree with titchy that it would be helpful to know the additional risk if adding on another two hours.
Best of luck whatever you decide.

I'm sorry, I have no idea what you should do but think it is incredibly unfair of your DH to leave this massive decision to you. You may share this condition with your daughter but it doesn't give you any special useful knowledge to inform your decision about this surgery. You both need to do this together.

When I read your first post, I didn't get the impression that the two surgeons were saying different thrings. Both seem to recommend the surgery, though they don't seem to agree on when to do it.

I agree with PP that her not being in school yet, means that she does not have to keep the school schedule in mind for recovery. She might also not remember it well, as she is really young. All surgeries are risky. Go with your gut.

I would do it now while she's young. The recovery time won't affect school and the cosmetic part of the surgery will improve her confidence.

As the mum of a nearly fifteen year old boy with a severe speech disorder that has had 11 years of private and NHS intensive therapy which hasn't made a great deal of difference, I would say have the surgery.
Like a previous poster, my son is affected socially and academically, his confidence is low, he refuses to speak much outside the house or to strangers. He refuses to use a device to help as he says it makes him look stupid. He knows his speech is poor and it embarrasses him. He has been told now that his speech is as good as it will get, more therapy won't help.
Maybe the surgery will help, it might mean she needs less speech therapy or the therapy is more effective.
I have also had to make the decision about whether my children have spinal fusion surgery (unrelated to speech disorder). It's incredibly hard to know if you are doing the right thing, and to be honest, I think it's unfair that the 'experts' leave parents to make such difficult, life changing decisions

How bad is her speech right now? Can strangers understand her at all, does she get angry when you can't understand whatever she said?

I don't think I'd be so afraid of 8 hours, tbh, it means they want to do a proper job & she has (presumably) recovered very well from anesthetic in past.

As there will be a positive to the surgery even if the primary reason is not successful I would agree to it, especially in view of her age.

If there is a chance it will succeed then I would try it.

What do the surgeons say if you ask what they would do if it was their child?
Other than that, go with your gut feeling.

But weren't both surgeons saying the same thing? In that she'll probably need the surgery at some point?