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??

We are leaning towards doing the surgery, and these answers are making me feel a bit better.

One of my concerns is her remembering the surgery, so having it done sooner would be beneficial.

Also, her speech is at the stage where she is only understood by people who know her well, so she does get frustrated when trying to communicate.

Any improvement would be great. And given that she would get the cosmetic part done too makes me think the only downside would be the anaesthetic risk (which I am assured is very small).

I'd go for it based purely on the premise that I would rather take every option available, rather than avoid options based on fear. The sooner you can get anything fixed that can be fixed, the better.

Crunchymum

The surgeon who disagrees with surgery now thinks that speech therapy can correct the problem, but he's not 100% certain.

Go with your gut dear OP

I find when I truly can’t make a decision I Ross a coin . If I don’t agree with how the coin lands that helps me see where my heart is

It’s a very tough call and worth speaking to trusted friends and family too

I truly can’t advise you , but I would err towards having it . Rationale being a surgeon would not propose such major surgery with the issues the NHS have if they didn’t see clear benefits

I’d do it. And I don’t say this without experience of a child having surgery. My daughter has very severe scoliosis and has had 25+ surgeries and she’s had open heart surgery.

Anything that improves her life is worth doing.

At 3 she won’t remember.

Also, her speech is at the stage where she is only understood by people who know her well, so she does get frustrated when trying to communicate.

Given that I think it's a no brainer. My DD had surgery (different surgery but significant for her) when she was 9 and it was the best thing we ever did for her.

Is she due to start school Sept 2019 or Sept 2020?
I'd be more inclined to do the surgery if starting school sooner.

3 of my DC had speech delay, not due to structural problem so maybe I can't appreciate how that changes things. I can appreciate having kids that are very hard for anyone to understand (including all of us who knew them well). If your DD can communicate well with some people then she's doing better than many 3yo kids with speech delay.

ps: is it TC-Syndrome? I'm a nosy fecker, I know. You may ignore this Q.

YeOldTrout

She is a September birth so is starting reception in 2020.

I'm not offended at you asking, she has UCLP (Unilateral Cleft Lip and Palate) with additional jaw development problems.

@billywigsting how old were you when you had that surgery if you don’t mind me asking? Have a 4 year old with a squint, surgery was mentioned at last appointment and I was a bit shocked to be honest, but since reading up on it I’m thinking it may be a good option. Especially as he has good eyesight and wouldn’t have to wear glasses if it weren’t for his squint.

Sorry to jump on your post op. If I were you I would think about how much it could improve her quality of life versus the risks/pain associated with surgery. This must be so hard for you.

What does your SaLT say? Is she/he as confident as the first surgeon that therapy alone will resolve the problems?

Obviously I know nothing about your DD's individual situation, but I'm surprised a surgeon is so confident that Speech Therapy can resolve the issues (I am a SaLT so not being disparaging about the profession!) I am particularly sceptical as both surgeons are saying there is a possibility that surgery will not itself help. Clearly, its not black and white.

I think there sound like a lot of positives to doing the surgery now. I presume DD will need Speech Therapy after surgery anyway, you just may help the process along the way by having the surgery sooner rather than later.

Please don't feel guilty about whatever decision you make. You will be following medical advice either way! If you opt for surgery, remember this is not you pushing for a procedure that doctors don't want to do, surgeon no. 2 is advocating it now, and surgeon number one is saying it is likely DD will need it in the future

Good luck

MrBirlingsAwfulWife

I spoke to her speech therapist a few days ago for advice, as I have a great relationship with her. We see her once a week so she's very close to my daughter.

She said to me she does not know what she would do if it was her in this situation. She has reviewed my daughters x-rays many times and has said that it isn't clear what they should do. The x-ray results aren't consistent with the speech defects she is having, so the therapist was very honest on saying she did not know what to do.

“What does your SaLT say? Is she/he as confident as the first surgeon that therapy alone will resolve the problems?”

That’s what I was going to ask, from my experiences other health professionals are not great at predicting what SALT can and cannot do.

tabularasa see my comment above.

It's not clear from my daughters x-rays what should be done.

The speech therapist isn't sure whether the problem is habit or a structural issue. The x-ray suggests her palate is functioning normally, but her speech doesn't.

Did you ask her what she thought the downsides to having surgery now might be?

She may feel reluctant to advocate surgery without being confident of the benefit. However, if the likelihood is that the only downside would be no significant improvement, then you at least know the situation.

Is her speech hypernasal?
Is there any concern that surgery might negatively affect the function of the palate?

OP my ds has a bilateral cleft lip and palate (a small part of a big syndrome) and I wonder if you are talking about a pharyngoplasty? If so d's had one at 3 and it made a big difference to his speech. He doesn't remember the OP either. When he was having it an older girl (14) was only having her s as her parents had opted to hold off but after years of SLT her speech was not intelligible to strangers. She found the op very distressing and her mum was in a terrible state saying that she should have done it when she was little.

I would go for it without a doubt OP.

I had surgery at the age of 4 and the only things I remember are counting to 10 and then being given a present by my Dad in the car on the way home. I don't remember anything in between and I only know I can remember it is because I spoke to my parents and they were amazed. There aren't any bad memories at all.

I know it's easy for me to say because it isn't my child but I would go with the surgery now. It seems like she's going to need it at some point and right now it will probably impact her life the least.

I think i would go for the surgery. If therapy doesn't work it sounds like surgery will be the next step anyway. You get the bonus of the cosmetic side as well so even if it doesn't work there will still be a benefit to it.

Easy for me to say though as not my child going through it. I can only imagine how difficult it must be to contemplate the risks of surgery

I would wait at least a year and see what progress has been made with SALT. Your SALT sounds good and children change at lot between 3 & 4 naturally.

We moved overseas when my sister was 5, she doesn’t remember anything about living in the UK at all. I remember very very little from before I was 5, I don’t think waiting a year will dramatically change her recollection of it.

Make sure your DH is taking his share of responsibility for this decision. Whilst you can weigh in heavier as you have it too, it’s not really about her condition, it’s about the risk and outcome of this surgery which you are no better placed to decide about than he is. You need to be in this together, not him deferring to you, that’s important.

If it were my daughter (assuming the risks of the actual surgery were low) I would go for it. I appreciate it’s easy for me to say that given it isn’t my daughter, but I think the benefits you’ve written for her would swing it for me.

I wish you all all the best whichever way you decide 💐

I am leaning towards the surgery...if there is a chance it will give her a better quality of life. However, I can totally understand your apprehension. There isn't a right or wrong answer - otherwise both surgeons would agree. You would just be following the advice of one of the surgeons, that's all.

Is there a chance you could get a third opinion? Could you try and contact experts in the field? There must have been other children who were in the same situation as your daughter?

When I was in my 20s, I had to undergo chemotherapy after I'd had a cancerous lump removed. I had an appointment with a doctor in a fertility clinic who advised me to have ivf first as chances of conceiving after chemo would be so small. Whereas the oncologist advised me to start chemo straight away. And I had one day in which to decide!! I decided to go ahead with the chemo (and went on to have DS some years later).

MrBirlingsAwfulWife

According to the speech therapist the only downsides of having the surgery now are the anaesthetic itself and the possibility of post op infection.

Her speech is very hypernasal. She also substitutes certain sounds for others, something which speech therapy doesn't seem to be helping.

Her D sounds are Gs.
Her P sounds are C or Ks.
Her M sounds are Ns.

These are all things that speech therapy was supposed to help with, but they aren't.

canyouhearthedrums

I'm not sure if it's pharyngoplasty. There isn't alot of tissue there. Her cleft palate was wide and affected both soft and hard tissues. She pretty much just had a large hole/gap where the roof of her mouth was. You could see light through her nostrils.

It's been repaired but there's not much tissue there, as I understand it.

It's reassuring that it doesn't sound like there are concerns that surgery might actually do damage. I'm not minimising the risk of anaesthetic and infection but they will still exist if you opt to delay.

I'm assuming that the hoped-for speech improvement would come from reducing the hypernasality? But I'm slso guessing that she would need intensive therapy focusing on sound production afterwards.

Maturity will help and if her nasality is reduced she may get better feedback on the way she is producing sounds.