As Shakira once said, the hips don’t lie and early in 2017 Lyla’s left hip was telling us that it was totally dislocated. Hips are a big deal in the world of anyone with cerebral palsy. When you don’t weight bear and you have an unusual pattern of movement it can cause problems with your hip development as you grow. Hip dysplasia in kids with cp is very common and Lyla has had her hips xrayed every 6 months since she was born. Each time we hoped that the degree of misalignment would be low and for the first three years it was but then just when we were about to move to Scotland the misalignment increased sharply over just a 6 month period. Before we knew it earlier this year her left hip was showing as totally dislocated and there was no hip socket to be seen on the X-ray.
We hadn’t been expecting her to need surgery so young. We had been hoping to hold it off for a few more years so it was a surprise to find myself talking with a paediatric orthopaedic surgeon after a regular hip X-ray win April 2017. Lyla needed a total left hip reconstruction consisting of a femoral and pelvic osteotomy and adductor release. 6 hours of surgery and a minimum of 5 days in hospital followed by 6 weeks in a spica cast. Wondering what all that means? Basically the surgeon would take a piece of the bone in her femoral head and used it to form a cup shape in her pelvic socket. Then he would use a metal plate to attach her femoral head to the pelvic socket and to hold it in place while the bones heal and regrow. Now I know you are wondering what on earth a spica cast is? Well it’s a type of plaster cast that keeps all the bones in the right position while they heal and it looks like this
At this point Lyla didn’t appear to be in any pain and she still had massive range of movement thanks to her hypermobility so the question I asked was, what happens if we don’t do this surgery? The answer was pretty direct, within 2 years her hip would become so damaged that she most likely would have ended up in pain and if the hip became too badly damaged the surgeon wouldn’t be able to reconstruct it and she would have had to have major surgery to remove part of her femoral head. This would have meant no weight bearing and her ability to assist us with transferring her would have been impossible.
So at the end of August 2017 after being on the waiting list for four months we went ahead with her left femoral and pelvic osteotomy.
It’s a pretty full on story so I am telling it in a couple of parts.
We talked openly about Lyla’s surgery in the months leading up to it. I didn’t want to keep it a secret from her, it was her body and it was important that she understand what was happening and that it was nothing for her to be afraid of. She understood, to whatever extent a 4 year old can understand, why she needed to go into hospital and what would happen. Her surgeon did a fantastic job of explaining everything to both of us and he did a beautiful job of talking to Lyla directly rather than about her. He asked if she had any questions and she indicted that she wanted to know how long her cast would be on for and what colour it would be. To her delight Lyla was able to choose the colour of her cast so of course she went for neon pink.
I focussed on the practical aspects. Like finding the perfect beanbag for her to sit on in her cast, figuring out how we could wash her hair, making sure she had plenty of comfy night dresses and clothes to wear over her cast and writing lists of what to bring to hospital. When friends asked how I felt about it I didn’t really know what to say. Obviously it was going to be a totally shit few weeks and I wasn’t looking forward to it but it was just something we had to do. I wasn’t worried about the operation or the general anaesthetic firstly because I have a great deal of trust in Lyla’s surgeon and his team at the Glasgow Children’s Hospital and secondly because Lyla doesn’t have any issues with chest infections and had been under general anaesthetic previously for two MRIs. However I was concerned about how we would manage Lyla’s pain and her movement afterwards, her surgeon assured me that there were many ways we could manage this.
Bags packed and the morning came to head to the hospital. Lyla loves her food so not being able to eat until her op at midday was tough for her. We didn’t want to make it worse by eating in front of her so we were all starving! I was able to go down to pre-theatre with Lyla and stay with her while the wonderful anaesthetist used the most gentle method I could imagine to put her sleep. She just held the mask near Lyla’s face and let the gas gently send her to sleep. Everything was calm and peaceful, there was no fear, crying or panicking from Lyla. So when I gave her a kiss on the head and walked away I felt calm and that she was safe.
Part 2: coming soon