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??

I'd go ahead especially as you said:

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.

So surgery now or possibly surgery in a few years after failed therapy.

I think I would have the surgery done. You won’t be left wondering ‘what if’? But I can fully understand why it isn’t an easy decision.

I'd get it done while she's little. If you think she's going to end up having it done anyway, you might as well when there's a chance she won't remember it later on in life.

I think the potential benefits to her speech makes opting for surgery really worthwhile. The speech therapy route sounds long and laborious.

I have a child with a speech delay and it’s tough. It’s so miserable trying to understand them and they get so furious as they’re trying so hard to be understood.

Good luck with whatever you decide.

Hi celestia, Dd2 is a cleft child so I have some experience with the cleft teams they don't always want to give a straight answer her speech is awful at 2 even her dad can only understand 4 words
Have you joined the clapa Facebook group? A lot of other parents will have been through the same

I agree with other posters better for her to have the surgery now she won't remember and a chance of helping her speech is better than than none

@Beanbag12 I was in reception so would have been about five years old.

I have very vague recollections of bits of it, I remember the anaesthetist being very nice and the 'magic cream' (numbing cream they use so the cannula doesn't hurt) being a bit itchy. I remember having a big fuss made over me and getting to choose lovely new glasses a little while later but don't actually remember the pain of it at all.

I also vividly remember a girl in my class when I was around 10, with the same condition who didn't have surgery, and how much she loathed her itchy and uncomfortable eye patches, how she would sneak them off and put the spares down the toilet so she wouldn't have to wear them. I remember her crying because the boys all called her a pirate. As an adult she still has a noticeable turn in one eye and that has affected her confidence as a teen/young woman (we are late 20s now)

I think my mum made the infinitely kinder decision. I also don't need glasses as an adult except to drive.

I'd say yes. The extra two hours is a co cern, but the 6 hours is a concern. Therapy may not fix it- this gives the best chance of working along with therapy. But I understand why it's tough.

There are (argued about) guidelines when kids can make those sounds correctly, How far behind (many months) is she in making the correct sounds -- she's not even behind with d/g according to that link, a little behind with m/n. P turning into k isn't usual.

She is very young for any speech therapy to work. They won't do SLT around here in under 4s.

Could more growth mean more tissue/more bone to make the surgery more successful if done later? It sounds like it might, so delaying a decision on the surgery until later might be very beneficial. Unless more bone growth is going to make the surgery more difficult (surgeon can advise).

Does she understand speech, can she hear the differences between those sounds? Her SLT will be able to tell you if she can consistently hear the differences; she needs to hear them before she can learn to say them.

If she can't yet notice the differences when she listens, then the problem isn't structural, it's just that she hasn't noticed the differences.

I could easily imagine putting off this decision for another 10 months or so.

Op I don’t know anything about speech and language so I can’t comment on that.

My child had an 8 hour surgery at 3. It had to be done. I found it traumatic and heartbreaking that my baby was under anaesthetic for so long. BUT I had complete faith in their surgeon. My child can’t remember any of it. It was a lot easier because they were younger. I don’t think mentally they would cope with it now they are a teenager.

My daughter has a rare bone disease. Making medical decisions on behalf of a child is very difficult anyway but we have to decide with incomplete information (just because no one knows) and with different risks affecting each option, so I feel for you.

How specialist are your surgeons? We've been given wildly inaccurate advice by doctors who knew nothing about my DD's condition. Of course they were well intentioned but when you are dealing with rare and odd (medically speaking I mean) conditions, not all doctors know enough to advise. Also is there an FB group or similar for patients with this condition? Our FB group is excellent for getting personal advice on what it means to go through these complex operations and treatments.

Given her age I would give it another year or two before deciding on the operation. With my daughter I found that medical procedures done earlier were more problematic as she could not understand enough and was just scared and stressed. Now that she is 7 it is easier to explain options and choices to her, she feels she has more control over what happens to her and finds it easier to deal with the pain and complications.

Speech therapy may help your DD, and I hope it does, but if it doesn't in a few years your DD may have an opinion on the possibility of surgery.

Sorry just to add. My DD goes to Sheffield Children's Hospital and their policy, at least in what they told us, was to wait as long as medically possible for children to be old enough to understand what is happening and be involved in decisions. They have also strongly encouraged us to be honest about pain, rehab, etc. and discuss all this directly with the children.

We've been given wildly inaccurate advice by doctors who knew nothing about my DD's condition. Of course they were well intentioned but when you are dealing with rare and odd (medically speaking I mean) conditions, not all doctors know enough to advise.

This.

I had a weird conversation with one doctor post my daughters first major surgery.

She was talking about bits of it and mentioned numbers in context to the surgery and I had to point out that the numbers on the notes were actually the date the surgery occurred!

Thankfully she wasn’t actually involved in my daughters care and I have complete faith in her surgical team.

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.

Will she need further surgery in the future anyway?

Does she understand speech, can she hear the differences between those sounds? Her SLT will be able to tell you if she can consistently hear the differences; she needs to hear them before she can learn to say them.

Yes, I was wondering this myself.

I have a bilateral cleft repair. Hard palate was similar to what you describle.
Do it. She will have a hard enough life as it is without you holding out. Once the bullying starts surgeries willl add extra emotional stress to your DD. And don't think she won't get bullied, she will. I was and I still get comments or simply stared at and then completely ignored.
My d sound is still a but g like but mostly I can be understood.
Do anything you can to make her life easier for her in the long term.

Forgot to add. You also had the sane condition. You know how hard her life will be. Why dither about surgery?

O P from what you have said it is a pharygoplasty, where they tighten up a a ring of muscle at the base of the sort palate. Ds's severity of
clefting was a 10, he only had a few mm's of hard palate running centrally which was actually nasal tissue. The sounds that you r dd are mispronouncing are typical of hypernasal speech, and a pharyngoplasty combined with post op SALT usually does the trick. About 10% of children will need a second procedure as there is still some air escaping. My surgeon said it was a fairly routine OP and I didn't hesitate. We got home the next day and went on holiday 10 days later.

What regional cleft centre do you attend OP? Feel free to ignore.

Thanks for all the responses, gradually getting through them.

MrBirlingsAwfulWife Yes the idea is that the surgery will reduce her hypernasality. And she will have intensive therapy afterwards too.

Needlemaker I have found that with our cleft team too. I think it's because every cleft child is different and what works for one, may not work for another.

I am on the CLAPA Facebook group, it can be helpful, but I have found posting on here is sometimes better in getting a more unemotional response if that makes sense?!

YeOldTrout You make some very good points about waiting and letting her tissue grow more. Certainly something I will raise with the surgeons. Also, regarding her actual comprehension of sounds, I'm not sure and will ask her therapist.

Booboostwo There is no one higher up, these are the specialists who have cases referred to them from other doctors. I'm not concerned as such with my daughters treatment, it's more the difference of opinion, and knowing what to do for the best when you are getting conflicting advice. Both doctors decisions have reasoning behind it which makes it so hard.

ButchyRestingFace
Yes her next surgery was already planned for a few years time, but was for a slightly different reason. This would be in addition to that, and to fix something we thought had been dealt with in her previous surgeries.
Regarding her comprehension of sounds, I'm not sure. I don't know how to tell. Something I can ask her therapist when we meet next.

Strippervicar I suppose I'm 'dithering' because an 8 hour surgery for a 3 year old is alot to put her through when there's no guarantee of an outcome. She's had so many surgeries in her short life already, I don't want to put her through anything unnecessary if speech therapy can help.

canyouhearthedrums interesting thanks, how is your sons speech now?
We are in Essex, I don't want to say the hospital though.

@ButchyRestingFace is right about your dd needing to distinguish the difference between speech sounds and I'm sure your SaLT will have assessed that. E.g.the difference in sound between the words 'key' and 'tea' is tiny, but it is vital to be able discriminate between the 2.

The trouble for children with physiological and anatomical differences is that they way they say the 2 sounds will be affected by their individual mouth shape and palate etc. So, often they can perceive the difference when others are talking, but find it much more difficult in their own speech. This is in addition to the challenges of physically producing sounds.
My gut would be towards surgery, but understand it's much easier when it's hypothetical.

Good luck with your decision!

MrBirlingsAwfulWife Thanks I appreciate that! My gut says surgery too, and I'm starting to feel a little better about it. Thanks for all your helpful insight.

His speech is no longer nasal but due to other issues he has (developmental) a lot of his learned speech patterns persist. This is why the earlier is better done as early as possible. his speech is certainly much better though.

My oldest has very nasel speech sounds. We did speech therapy for years and in the end they have just given up on him. No other investigations where done on him. My middle child had speech therapy for unclear speech and was discharged within 6 months as she had got upto the level where she should of been. Both had the same salt workers but they couldn’t fix both children’s problems only one. I have a friend who’s child has been with salt since my middle child started and he still is with very little improvement years later. I would do the surgery if there is a chance it might help.

Another thing to consider is the younger she is, the less she'll worry (and understand?) about the surgery and the less she'll remember.

What does her dad think?