Delaying toddler’s surgery for hip subluxation?

HappyMummy

Hello everyone.

I am mother to a beautiful little boy, with cerebral palsy. GMFCS 4, spasticity in all four limbs. He is extremely healthy and exceptionally happy child, an absolute joy to care for. He is also making brilliant progress with his motor skills, now at 3 able to army crawl between rooms, roll around, and plays a lot in a kneeling position.

We have been having his hips routinely surveilled by an orthopaedic surgeon. They are now dislocated by 38 and 43 % on the most recent x ray, but he is not in any pain and has an excellent range of motion when relaxed - we stretch him daily. The surgeon has not witnessed this. He was not relaxed in her office.

She has recommended that he has a soft tissue release surgery (and also wants to do bony surgery) with a six week brace afterwards. I went away and researched very carefully, and the risks of this procedure seem to outweigh the potential benefits in his particular case (non ambulatory/ his age and condition) - either way he will almost certainly require an operation in the future anyway so it won’t prevent this. 

He is still so young at 3. My husband and I would like to delay the surgery until he is older and has had more of a chance to grow and develop in his motor skills. The journals say that the surgery has more success in kids over 6. 

Six weeks out at this time seem like a disaster when he is so happy and thriving, and learning new skills every day. It is such a crucial time in his life. The surgery has such limited success, too, and real risks. However we are very wary of sharing our view with the surgeon who was extremely keen to
operate - we are also worried that if we refuse, the hospital may seek to obtain a care order to force it through. Though they have not said that.

We have asked for a second opinion (however he is a friend of our surgeon!!) - we are at our wits end, so scared and worried, and any advice or wisdom would be hugely appreciated. 

chiarieds

Hello @HappyMummy - I'm pleased to welcome you to the community. We are fortunate to have the expertise of @Richard_Scope whom I'm sure will better advise.

However, if you don't mind, I'd like to say how great it is to read about the obvious care & love you both have for your little boy, & add I hope some insight too.

First, as parents, you are the most important people in your son's team, & nothing will be done as far as treatment goes without your consent.

Surgery may be contemplated even tho your son isn't in pain. There are so many variables, as every child is different, so there's no one size fits all. Monitoring your son's hips is important, & your specialist is in the best position to advise, & honestly, I would voice your concerns to her, as she should discuss the pros & cons of surgery with you.

Now speaking as a Mum, & also as a now long retired physio. Our son does not have CP, rather both his feet were turned inwards at birth (talipes equino-varus). With my background, he obviously received an awful lot of physio, yet his feet were recalcitrant to treatment, so he had surgery on one foot one week, then the other the following week aged 14 months old. So, just trying to say, with the best will in the world, perhaps despite all the stretching you do, as did I, options should be discussed with his orthopaedic specialist.

One last comment, from having a child with other problems, again not related to CP, but I'm saying as you mention 'journals,' by which I take it you mean medical journals, tho I could be wrong. I learnt that some medical journals are better than others, some studies show poor evidence, some studies are just on a handful of patients, some studies need further evaluation to confirm their findings, etc. Overall it can be a minefield. Again I would therefore say that your son's orthopaedic surgeon is in the best place to advise, but do ask questions......if you don't ask them, you don't find out more.

My best wishes.

HappyMummy

Thanks so much - you have given me a lot to think about. It is very heartening to know they will not force it on him. I hope so much this is true. They have reported us to social services once before because we didn’t want a speech therapist in a mask around our son, as we thought it might harm his communication - we instead got a private one. Regardless he ended up wrongfully on the child protection register because of it. The arrogance of the local nhs practitioners is astounding.

I will try and get a second opinion somehow!

Lizw

Hello,
your post touched a chord for me, as my daughter is 4, she has cp, gmfcs 3, she is awaiting the same operation. She chooses to crawl around the house, and walks short distances with a frame outside. She has no pain in her hips. 

I wonder if you have managed to get a second opinion now? As the way the operation has been explained to me is that due to not weight bearing as much as other toddlers, and the cp pulling on the bones as they grow, the hip bones are not forming as they should have and that they will continue to grow to dislocate, it will get worse and without an operation she won’t walk at all. I also am aware that the operation will probably need to be re done when she is older.
when I have discussed the recovery from the operation with ots and physios, I am aware she will be ‘off her feet’ but that she will be able to go in the car and wheelchair as long as she feels ok, and will be allowed to crawl when she is drip to it too.
I hope you get the information you need, for me the idea that she won’t be able to walk in the future if we don’t do it, made it certain for us. 

Good luck.