Oops, I didn’t mean to leave the story hanging – but you should take from the sudden lack of updates after the second operation that the concerns and hassle gradually melted away and life got back to normal remarkably swiftly, leaving not enough time to write here. So I thought it was worth updating this site now, two years after E’s first open reduction operation, (when this site was last updated), because people keep finding this site via search engines when looking for experiences and support about this condition. I’ve added lots of photos, too, so you can see what normal life looked like in spica. So here we go!
E’s second open reduction took place six weeks after the first. Being in hospital was the hardest bit, though we were only in for a single night that time. It was easier in general because we knew much more about what to expect from the procedure and the logistics of handling the spica itself, so we just had to wait for E to get over the anaesthetic before taking her home.
E’s second cast was shaped slightly differently to her first – a little more upright, with her “long” cast leg hooked backwards slightly, which meant that all the tactical adjustments we’d made for the first cast (like how to best fit into buggy and car seat) had to be tweaked. She didn’t really fit into a high chair in the second cast, so she ate on one of our knees or sitting upright at the spica table we’d had handed down to us by a family who’d gone through the same before us.
The second stint in spica was much easier than the first, because we knew what we were doing, and we were lucky that E’s childminder also took to spica care well, which was a great support. It was also easier because by that point we’d had some positive feedback from the consultant about how the first operation and setting had gone, and because we knew it was working, we were able to see the point of all the hassle.
Honestly, it was still a hassle, but the things that daunted us in the early days – like nappy changing – became straightforward and easier to deal with. It shouldn’t be underestimated, though!
When out and about, I soon discovered that changing tables in cafes, garden centres etc were a bit useless, because they either folded down from the wall with the long edge attached (which meant they weren’t wide enough for a spica) or they folded out lengthways, in which case the structure wasn’t strong enough to support the weight of a toddler in spica. So I found it easiest to change E’s nappy in the boot of the car in the carpark – which caused some funny looks from people who saw me lifting my daughter out of the boot (if they hadn’t seen me also changing the nappy).
In the photos above and below, you can see we added sleek tape to the open edges of the cast (around top, crotch opening and legs) to prevent it scratching her or getting snagged on anything, but we also added tape around the knees, because this meant E was able to drag herself across the floor, commando-style, without friction slowing her down.
We were lucky that E slept well in her cast. At the beginning we made lots of adjustments with pillows etc to make her comfortable in her cot, but actually, she seemed happier when we just left her to it and found her own positions to sleep in (often with one leg cocked in the air, hilariously).
Towards the end of her second spica period, E managed to figure out how to pull herself into a sort of standing position against a sofa or bench or in her cot. This goes to show how well kids adapt to this challenge.
Every case is different, of course, just like every child, but the vast majority of families that we have encountered on E’s treatment journey have experienced the same thing: kids handle it brilliantly and are remarkably resilient. It didn’t phase E as much as we thought it would – there were a few moments of sadness and frustration, but she was easily cheered up with stories, activities or Cbeebies.
We found a few pieces of kit invaluable during E’s time in spica:
- A beanbag, for propping her up in a seated position. The front of the beanbag often needed to be supported to prevent her from slumping, or her heel from pressing into the floor.
- A spica table
- A proper car seat (in our case, a Britax Two Way Elite specially adapted for spica) so we could extend our range and visit fun places and friends. We also used a buggy – in the first cast, E fitted well into a standard Maclaren pushchair. In the second cast, she was set too wide, so we reverted to the travel system she’d had as a baby, which we could adapt better.
- About a dozen additional cushions and pillows – for propping her up, adding padding, lifting one end of the cot mattress, creating dens…
- A cast cooler – it was hot when E was in spica, and it was good to have a way to help her cool down inside the cast
- Above all, flexibility: we had no way of knowing what was going to work because we didn’t know what shape her casts would take, so we needed to have the ability to make up solutions to her eating, seating, sleeping, amusement etc on the fly. That meant borrowing toys and books and other equipment, which was great.
On the day her cast came off, eleven weeks since her first operation, we were sent to the plaster room after some hanging around and then the technician whipped it off with an electric saw. As with the first cast removal, this was far more traumatic than any time spent in the cast – for all of us! But it was over soon enough and we suddenly had our soft, light little girl back. Her legs were quite floppy after so long without proper movement, but she wasn’t phased by the sudden lack of concrete trousers. On the first couple of nights after the cast came off, she seemed slightly unsettled and startled easily – we put this down to suddenly not being so constricted which must have felt very weird, plus sensitive skin on her legs. Once we put her to sleep in a sleeping bag she did much better.
Within a few hours of the cast coming off, she was pulling up again, though couldn’t bear weight on her legs yet. Within a couple of weeks, she was cruising happily and after five weeks, standing unsupported for a few moments and taking a few wobbly steps. Ten weeks after the final cast was removed she was walking happily.
And she hasn’t stopped wiggling, jumping, dancing, hopping or running since then! She occasionally points to the silvery scars on her hips when getting dressed or before a bath and says “I had wonky hips but the doctors fixed me and I am all better.” We’ve got our annual checkup with the consultant coming up in June and expect her progress to be all good. Full steam ahead!
The day we found out E had to go into pavlik harness (24 hours old) we were shellshocked and thought this was the worst thing that could happen. But she bounced and wiggled through that happily, and amazed us with her resilience.
The day we discovered she’d have to go into spica I didn’t know how we’d cope. It seemed impossibly unfair and difficult. Now, two years since the first of her operations, I can barely remember what it was like, and she won’t at all. Funny how things that loom so large (like sleepless nights and surgery) get so much smaller and easier as they fade into the distance.
If your family is dealing with a recent DDH diagnosis, or are about to go through the pavlik/spica experience, I hope this blog has been useful – if only to see that it really does get better, for everyone. Your child will be fine – and so will you.