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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Aibu to cancel surgery

70 replies

Gizmo2206 · 04/01/2018 10:40

My little girl was born with a leg condition that means surgery is a necessity to reduce the level of disability she will have as she grows older. Consultant is keen on a hip surgery that will mean her being in a full cast from chest to feet for 2 months. It's all booked in but I'm tempted to cancel because I'm worried about the General Anaesthetic risks. My DD is almost 3

OP posts:
PigletWasPoohsFriend · 04/01/2018 11:23

It's not the OP who would suffer any ill-effects of the general anaesthetic, it's her dd for fuck's sake.

You are assuming posters haven't had to see their own DC go through anaesthetic and surgery.

pinkdelight · 04/01/2018 11:23

My DS had four surgeries under GA between the ages of 1-3 and it's honestly not a bad thing that they don't have a better understanding. They cope with it as it comes and then it's out of the way and mostly forgotten. I don't think anyone misunderstood you. They were just giving their experiences to reassure you. There is no good reason to cancel or delay by the sounds of it, especially not for the GA. Talk to your surgeon for reassurance.

Battleax · 04/01/2018 11:23

Her understanding better might make it harder rather than easier.

Paediatric aneasthestiata know what they're doing and the consultant wouldn't recommend "optional" surgery if the risks were high.

It's natural to worry, though. Can you arrange another consultation to talk all this over?

Battleax · 04/01/2018 11:26

Anaesthetists^

HoppingPavlova · 04/01/2018 11:28

One of mine has had many major surgeries from a few hours old through to current teen years with more to come. Every single age has advantages and disadvantages, there is not some childhood golden age that is optimal, trust me.

Aragog · 04/01/2018 11:28

Scary as it will seem, I think now is probably better than later. At 3 she is smaller and lighter, so she is easier for you to lift and support physically. She isn't in school so there is no education being missed. She is also young enough that she is less likely to get stressed by it or worried what her friends will say, etc.

If you had her issues, what would you want for yourself? I think I'd like the chance to have an easier life in the future, without a limp and other potential problems.

Original poster
Gizmo2206 · 04/01/2018 11:28

I think I hoped to come on here to be told it's a risk worth taking etc and that kind people would give positive accounts of surgeries and help me put the risks into perspective.

With lots of conditions you get given fact sheets and there's websites to help but because her condition is 1 in 200,000 and every case slightly different it means doing a lot of research for yourself (for example when found at her 20 week scan the specialist had never seen it before and we went away and googled and came up with the medical term). So there's very little in terms of statistics for outcomes of treatment. Some people opt out of treatment as it can actually be more disabling if unsuccessful.

OP posts:
TheGonnagle · 04/01/2018 11:30

You're perfectly within your rights to feel anxious and to seek further information/support from your daughters consultant. Hard as it is, this will improve her quality of life as she grows up.
It is a tough call, but be strong. Your daughter will thank you for it in the future.

ForgivenessIsDivine · 04/01/2018 11:31

Your update does Weighing up the risks is challenging. Surgeons do have a different approach to it than those who do not perform surgery on a daily basis.

My other son has hearing loss due to repeated infections. One ENT specialist has suggested pioneering osteoplasty which could help. Based on my experiences of my child, his ears and previous surgery, the risks are not ones that I am willing to take for something that might not improve his hearing.

If your concerns centre around your ability to explain and comfort her, I can say that both boys had surgery between the ages of three and four, it was hard for me and they were indeed 'the longest moments of my life' but they were OK and have not demonstrated any lasting trauma from the surgery, they recovered quickly and at the age of 8 and 13 now, have no recollection of the events.

TammySwansonTwo · 04/01/2018 11:31

I'd do it now, before she's old enough to remember - I had to have surgery when I was five and I remember it all, the blood tests and cannula caused a lifelong needle phobia. My son is 15 months and may need surgery soon and there are a few babies in my circle who've needed surgery younger than this - it's hard of course and worrying but I'd do it sooner rather than later in this situation.

GabriellaMontez · 04/01/2018 11:33

Sounds really difficult to weigh up.

Could you ask for a second opinion? Perhaps from a regional centre?

unyummy4amummy · 04/01/2018 11:33

Got distracted by warring kids so I've just seen your last post. I agree with Rat to discuss it with the surgeon further and make the most informed decision you can.
I would think however if they are offering the option now, they think its a good time for the procedure.

One advantage of having it now is your DD will probably be less nervous than when she is older.

RatRolyPoly · 04/01/2018 11:34

You are assuming posters haven't had to see their own DC go through anaesthetic and surgery.

No I'm not Piglet, I'm saying the word "selfish" describes someone who is concerned about themselves, and is not the correct description of someone who is worried about what will happen to someone they love.

user789653241 · 04/01/2018 11:35

My ds went through major surgery when he was 3. I know it's very scary and worrying for parents. We didn't have choice, since he would have died without.
It was heartbreaking to see the scared face of my ds when he was put to sleep and in pain afterwords.
But good thing is, he doesn't remember any of it now.

starfishmummy · 04/01/2018 11:36

I have a disabled child who has had many surgeries (some were for life threatening issues, others to improve the t's for him) so I understand that you are concerned.

Inwill be hard on her whenever you do it - but from a practical point of view it's probably easier now - shes smaller to lift if thats needed, and you dont have school to contend with

horatioisabrick · 04/01/2018 11:38

YANBU to be worried.

But cancelling the surgery would be very u.

unyummy4amummy · 04/01/2018 11:40

sorry got distracted by warring kids and I've just seen your last post.

I agree with Rat that you need to discuss it further with the surgeon to make the most informed decision you can. I do think if the professionals are suggesting going ahead now, they think its a good time for the procedure.

One advantage of having it now is that your DD may be less nervous and more accepting of it.

DianaPrincessOfThemyscira · 04/01/2018 11:40

YABU to cancel but YANBU to be apprehensive! I was the same when smallest boy had to have a GA to have his head stitched.

However, risk is low and people under GA are constantly monitored. I would do it now.

Have a read here: www.nhs.uk/conditions/general-anaesthesia/

RoseWhiteTips · 04/01/2018 11:41

Of course you are not being reasonable, OP. Surgery is carried out on children of your daughter’s age, for a reason. The GA is nothing to be nervous about although it is natural, for you as her parent to be a bit anxious. The medics know what they’re doing - you can trust them completely.

Original poster
Gizmo2206 · 04/01/2018 11:47

We have had a second opinion at Great Ormond Street and they agreed that 'at some point' they would also recommend doing something with her hip but then they called the day before her scheduled follow up and cancelled (September) and have just written to invite her for another appointment next summer so wait time is very long and the surgeon there isn't as expert in this particular condition as the person we see in our home town (luckily we live in the same city as the UK leading expert in her condition - though I think he said he has only completed 5 of this exact operation)

OP posts:
ByeByePrivacy · 04/01/2018 11:47

All anaesthesia has risks, but in children they have a general anaesthetic for things like "just" a head scan to keep them still.

Your consultant wouldn't recommend the surgery unless it had reason. They earlier the better. A limp might be painless but it will mean her spine might become curved over time causing her lots of issues when she is older.

You will meet the anaesthetist before hand to discuss. It is a hard decision, but please don't cancel the surgery without at least talking to someone first about your fears.

Sirzy · 04/01/2018 11:48

It sounds like she is in the best of hands then.

FreshsatsumaforDd · 04/01/2018 11:51

OP is there any way that you could seek or pay for a second opinion or is the condition just too rare?

I know of someone with a rare heart condition. Her local consultant was very keen on invasive surgery. She managed to find another expert through a support group for people who all suffered similar but not identical conditions. A new consultant, a professor at a different hospital, strongly advised her not to have the surgery. Many years on she remains well and glad she needed the second opinion.

Sometimes consultants differ in their opinions on the best way to proceed and in cases of complex treatment a second opinion is helpful.

Best of luck to you and your DC.

ShakeTheDisease · 04/01/2018 11:52

Your posts have been confusing, as you said very clearly to start with that it was the GA that concerned you and then, when replies disagreed with you, you changed that to other concerns. You do sound as though you're looking for reasons to cancel, I'm afraid, and that might be to your daughter's long term disadvantage. I would ask to have more discussions with the consultants, who in my experience are the best people to explain risks and probabilities, to put your mind at rest.

FreshsatsumaforDd · 04/01/2018 11:53

Oh dear cross posted and I see that you have had a second opinion.

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