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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

RoseWhiteTips · 04/01/2018 11:55

It is not unusual to be confused when you feel anxious.

Notreallyarsed · 04/01/2018 11:58

DS2 had a minor op under GA last year and I was panicking for months. I have anxiety anyway and this compounded it. However, the hospital staff were incredible at reassuring DS2 and us, and he coasted the GA. He was a bit dopey for 12 hours after but other than that he was fine.

IceBearRocks · 04/01/2018 11:59

We refused an operation on our din at this age. They wanted to have his tendons lengthened.
Our son had brain damage and we were not sure of the extent damaged. They conducted and MRI and we felt better about the operation. He was also having seizures.
Since he had had possible in excess of 10 GA's.
Get the op done...sooner it is...the sooner she's on the way to recovery and a full and independent life!
Good luck OP!!?

Original poster

Gizmo2206 · 04/01/2018 12:01

Hi ShakeTheDiseases (I don't know how to tag people)
Your question helped me to assess what it is I'm actually worried about, I think I'm worried about this being the beginning of a long line of surgeries that are most likely in the pipeline for her and the General worry as to whether surgery is the right thing to do for her (as I mentioned there's little statistical research and we have already been told our little girls case is moderate/severe so more risky to 'correct' but equally I want to give her the best chance of living a life not impacted heavily by her disability) but I think my main worry is her going under anaesthetic for a complex procedure that I suppose is an elective surgery (rather than emergency surgery that cannot be avoided)

OP posts:

rcit · 04/01/2018 12:03

The risks of the general anaesthetic are very tiny, I would not be worried about that. I would be more concerned with managing the recovery period. My 3yo had a GA and ran around happily as though nothing had happened (after sleeping it off for 2hrs).

Toddlerteaplease · 04/01/2018 12:14

Peadiatric nurse on an orthopaedic ward, here. If you don't have it done you will cause her problems for life. She'll be fine with the anaesthetic. (If she's having a femoral osteotomy/ pelvic osteotomy) make sure she has an epidural post op for pain relief. PM me if you have any more questions.

tabbywabby · 04/01/2018 12:14

In an otherwise healthy child, the risks of a GA are minuscule.

My DS had a 5 hour operation when he was 13 months old. I was beside myself with anxiety at various points until it was over. That's totally normal. All of us who have been through it can sympathise with the fears and anxiety. But really the risk is really tiny.

I am grateful he had that surgery so young and wasn't scared (because he had no idea what was happening) and remembers nothing. I think surgery at 4 or 5 or 6 upwards could be a lot more affecting for the child.

Toddlerteaplease · 04/01/2018 12:17

If she needs a spica plaster. Get it done while she's younger. A bigger child in a spica is an absolute logistical nightmare. As they are difficult to move.

tabbywabby · 04/01/2018 12:17

@Toddlerteaplease My son's surgery was on his kidney, not orthopaedic but he was given an epidural for post-op pain. They woke him in recovery and I nursed him briefly, but he then slept comfortably through till 5 the next morning and was then running around as if nothing had happened.

Original poster

Gizmo2206 · 04/01/2018 12:27

@toddlerteaplease thanks for your advice. That's why we decided to go ahead with the surgery now as she's getting quite tall for her age, but I'm also pregnant and worried about my ability to lift and hold her. How heavy will the spica be?

OP posts:

Toddlerteaplease · 04/01/2018 12:39

How old is she? The OT's will sort you out with a pushchair if you don't have one that fits into, and bring your car seat to be assessed as well. Our OT's provide a hip seat for carrying . You need to let them know you are pregnant. She is likely to be very heavy. They may want you to have a hoist to lift her. But it depends if she has a full spica or just 'shorts' on. If she's still in Naples you'll find it much easier.

Elephantgrey · 04/01/2018 12:43

It is hard to weigh up what to do when your child has a rare condition as there is so little information about it.
Have you been in touch with contact a family ? They have information on medical conditions affecting children and can put you in touch with other families who have a child with the same condition.

I would definitely see if you can speak to someone about the anestheic. This should reassure you.

Just because she has one operation doesn't mean she needs to have a whole cascade of surgery. If this one is to stabilise her hips that would be generally beneficial ( as someone who has hip problems myself).

I do understand your dilemma as surgery doesn't always have a good outcome. I think you need to look at each operation she is offered individually and assess the benefits and risks.

What is her mobility like at the moment?

Original poster

Gizmo2206 · 04/01/2018 13:16

She will be three in March and the surgery is booked for last day of February. She is tall and slim and definitely won't fit into our pushchair as she barely does now. Her mobility at the moment is really really excellent. She is fully potty trained in the day but wears a nappy at night. My understanding is that it will be a full cast as they will also stabilise her knee during the surgery

OP posts:

Purplefrogshoes · 04/01/2018 13:23

Op join the steps charity worldwide group on fb. You will get excellent advice on there from people with similar issues. They are really helpful about casts and what pushchair, car seat etc

Toddlerteaplease · 04/01/2018 14:20

I think you probably will find her to heavy to lift. But hopefully you will see the OT at your pre op and you can discuss things with them. Which area of the country are you?

Original poster

Gizmo2206 · 04/01/2018 15:56

South West

OP posts:

KrissMn · 18/10/2018 20:26

We went to see a specialist Mr Hashemi-Nejad at the Royal National Orthopedic about my daughter as she walks funny. He was quite dismissive and said she would grow out of it. We asked for more tests and he wouldn’t do them. He said she didn’t need them. She didn’t grow out of it and a year later we found ourselves in Oxford with Mr Theologis and we are so happy we did because he did much better tests and showed she needed surgery which she had in January and now 10 months later her walking is so much better - it’s all about finding the right doctor. Mr theologis is brilliant.

Allthewaves · 18/10/2018 20:49

Op do it earlier if you can as little one will have no memory and still small enough to be carried.

KrissMn · 19/10/2018 17:46

Thank you that’s what Mr Theologis said but not what the other doctor said. If we had listened to Mr Hashemi-Nejad my daughter may have had problems all her life

RedDrink · 19/10/2018 17:56

When I was 3 my Mother decided to stop putting me in my leg braces because they were making me look "less cute".

Yeeeeeeep. That happened.

I was supposed to be in them until I was 5, so I've had problems my whole life with my legs because of HER decision to ignore what the doctor recommended for me.

So I'm another who thinks the surgery is a good idea and the sooner the better.

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