Update: it gets better (and better, and better!)

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!

It was unusual to find a swing which she could fit in comfortably - so when we did, we took advantage.

It was unusual to find a swing which she could fit in comfortably – so when we did, we took advantage.

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.

This is a Britax Two Way Elite with special extension for the seatbelt (in blue). She didn't fit into it without sitting on a cushion as well, because her legs were set so straight.

This is a Britax Two Way Elite with special extension for the seatbelt (in blue). She didn’t fit into it without sitting on a cushion as well, because her legs were set so straight.

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!

Nappies are, it's fair to say, a total faff. It involves two sizes of nappy (one small one stuffed inside the gap, one big one over the top of the cast), with lots of absorbent gauze (gamgee) stuffed into the edges, an incontinence pad cut up into strips for extra protection at night - and all of this has to be done every 3-4 hours, to ensure no leaks whatsoever. We found it easiest to do half the change on her front (remove the old inside nappy, clean, insert new nappy then packing around the back) then flip her over onto her back to pack in the front of the nappy opening. You get used to it.

Nappies are, it’s fair to say, a total faff. It involves two sizes of nappy (one small one stuffed inside the gap, one big one over the top of the cast), with lots of absorbent gauze (gamgee) stuffed into the edges, an incontinence pad cut up into strips for extra protection at night – and all of this has to be done every 3-4 hours, to ensure no leaks whatsoever. We found it easiest to do half the change on her front (remove the old inside nappy, clean, insert new nappy then packing around the back) then flip her over onto her back to pack in the front of the nappy opening. You get used to it.

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).

Despite our best efforts to make her comfortable in bed, she preferred to figure out her own unorthodox sleep positions!

Despite our best efforts to make her comfortable in bed, she preferred to figure out her own unorthodox sleep positions!

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.

In spica. Amazing.

In spica. Amazing.

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.

Relaxing on a beanbag with a breastfeeding V-shaped cushion providing support. You can also see here that we used toddler socks to keep her feet warm most of the time.

Relaxing on a beanbag with a breastfeeding V-shaped cushion providing support. You can also see here that we used toddler socks to keep her feet warm most of the time.

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

    This custom-made spica table was a godsend. We were passed it by another family who had been through the same, and we passed it on to another family when we were done. The top lifted up on a hinge, and the seat was like a padded bike seat perch which meant she could sit astride it. I added a padded section to the back and a seatbelt (made from an old luggage belt!)

    This custom-made spica table was a godsend. We were passed it by another family who had been through the same, and we passed it on to another family when we were done. The top lifted up on a hinge, and the seat was like a padded bike seat perch which meant she could sit astride it. I added a padded section to the back and a seatbelt (made from an old luggage belt!)

  • 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

    This is the kind of random thing we ended up having to do which we never even thought about before.  When it hot inside the cast, it got itchy and damp, which could cause her skin to break down. So we used a cast cooler attached to the vacuum cleaner to suck air through the cast, which cools it down. She was remarkably unfazed by the whole big faffy thing.

    This is the kind of random thing we ended up having to do which we never even thought about before.
    When it hot inside the cast, it got itchy and damp, which could cause her skin to break down. So we used a cast cooler attached to the vacuum cleaner to suck air through the cast, which cools it down. She was remarkably unfazed by the whole big faffy thing.

  • 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.

Muscles returning. Happy to be out. Not as happy as we were though!

Muscles returning. Happy to be out. Not as happy as we were though!

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!

Hello!

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.

xxx

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It’s getting better

It’s been a week since E was discharged from hospital, and the difference is unbelievable.

Since she stopped the post-op course of diazepam, she’s been much more herself, thankfully. We’ve gradually been getting better at the nappies and the general handling, and while the cast itself is still awkward to wrangle, it’s clear that it’s way harder for us than it is for little E. She has been amazing, taking the whole thing in her stride (no pun intended), and even starting to pull herself around the floor on her tummy. We put sleek tape on her knees to help her to glide over the rug in the living room. She’s so determined; there’s no stopping her. It’s brilliant to see.

ImageWe also made an executive (well, parental) decision after the first five nights of waking E up at 11pm and 3am to give her medication and change her nappy. It was making her grumpy (and consequently, us too) and difficult to settle afterwards, and her nappy didn’t seem that wet. So we decided to drop the 3am change, and – yay! – she slept through from 11pm until the normal time of about 7am.

On Tuesday morning, she woke at about 4.30am and would only settle facing into my chest, so I ended up propped up on the daybed in E’s nursery, covered in sleeping heavy baby, while I fiddled with my phone and caught up with the internet until the rest of the house stirred around 7.30 and I could go back to bed. What did parents do before the internet and iPhones?

On Tuesday afternoon, we had a family outing to a local farm and farmshop. E loved feeding the ducks – no change there, then – and we had a cup of tea and a slice of cake (adults) and milk and savoury flapjack (E) and watched little birds and rabbits hopping around in the farmyard. We felt, for the first time in a week, like we were starting to approach something like normality.

On Wednesday evening, the childminder came over to see how E was doing after the op, and to learn about changing nappies and general handling. She seemed a little daunted (understandably!) but game to take on the challenge. Today, E spent her first day at the childminder’s setting since going into spica, and she did brilliantly. There were no leaks, no tantrums, no problems. The childminder texted to tell us that E was being delightful and charming and giggly – a huge relief.

The hardest things about dealing with a toddler in hip spica, after the first week

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Because we had been anticipating E’s surgery and treatment for such a long time, we had plenty of opportunity to read, research, prepare for what life was going to be like when she went into spica.

But nothing prepared us for the reality.

At the risk of whining, here are the hardest things about having a fourteen month old in spica, or at least dealing with our toddler in spica:

  1. Since about 6 months, E has slept on her tummy, and spent a good portion of each night shuffling around and changing position. Now that’s no longer an option, she is miserable.
  2. She had a temperature after the operation. Nothing dramatic, just a low-grade fever from about 36 hours after surgery for a couple of days. Although a temperature of 38-40ºC is fairly run-of-the-mill for a toddler, when it’s a toddler that’s undergone a fairly significant surgery recently, you worry about infection, and when that toddler is now encased in a body-cast, you worry about how to bring the temperature down. And when they’re already taking paracetamol and ibuprofen for the pain, and the fever isn’t coming down, you worry more.
  3. Before the op, E had been cruising, crawling and exploring the world more and more physically. Now, a week into life in the cast, she is getting frustrated at her sudden physical limitations. I see her trying to turn over. I see her trying to crawl and weeping with frustration that she can’t. I see her being confused and upset when she can’t reach things. It’s heartbreaking.
  4. Over the last few months, E has gradually been playing more independently. She’s been able to go and find the books and toys that she wants to play with at that particular time, or head towards the room she wants to be in, plus bring herself over for a cuddle when she wants one. Now she can’t do any of that, and without language skills to tell us what she wants, we’re reduced to guessing. We spend the whole day thinking of things that will amuse her, and often failing because we’ve got the timing wrong. The same is true of eating and sleeping. We knew her subtle signals very well, and now it feels like everything’s changed and we can’t read her anymore, so consequently we keep missing the cues and getting it wrong.
  5. People who had been through this before told us to expect E’s appetite to diminish while she’s in the spica, and to try snacking – eating little and often – instead. E’s always been a light eater, bordering on fussy, and mealtimes have always been pretty stressful because she doesn’t seem to eat enough. Her lack of appetite since the op has been startling. She really doesn’t want to eat anything, except for the odd yoghurt, and maybe a slice of banana or a strawberry, or a tiny square of toast and honey. And milk. Lots of milk (but only in a bottle). So of course, that’s what we’re giving her, which just makes us worry about whether we’re setting up trouble for ourselves later on, because she’s eating like a baby half her age. Maybe it’s a comfort thing.
  6. E has always been a happy baby. She’s quick to smile and laugh, she has an open, curious approach and loves strangers and meeting new people, beaming at them and initiating games on the street and in cafes etc. She’s generally very easy-going. But since the operation, her default position has been crying – whimpering, really. She whimpers when uncomfortable (often), whimpers when bored (often), whimpers when frustrated because she can’t do a thing she wanted to (often), but also whimpers when something changes, or when something happens that she doesn’t like. It’s not a tantrum, it’s just being very sensitive to what she wants and needs (and hasn’t got, or isn’t able to do). But it’s ever so wearing for us. To top this off, she has also decided that new people, or people she doesn’t know very well, are not to be trusted. In the hospital, every time a person in a uniform came around the curtain around her bed, she would start to wail in fear and protest – understandable, really, because many of the strangers concerned went on to poke and prod her. But now we’re out of hospital and she’s still doing it, which makes being in public spaces hard.
  7. The cast is really heavy and awkward. It weighs as much as she does, and picking her up is difficult. Maneuvering her is hard, too, because of the position which means it’s almost impossible to turn her round while she’s on your lap and so on. You can’t pick her up by the underarms anymore, just by the cast around the waist/chest, so instead of a natural lifting action, you’re actually pushing inwards and raising your arms. Plus I’ve had carpal tunnel issues since she was born, and it’s become clear that all the lifting, twisting and carrying a suddenly-super-heavy infant is going to kill my wrists (not to mention back).
  8. We’ve had a few days of pleasant weather here in the UK, which is generally nice, except the raised temperature combined with the stupidly unseasonal cast means that E’s got heat rash all over her back and chest. We’re trying to keep her cool, dressing her only in a single layer of cotton to wick away any sweat and keeping her room as cool as possible, but if we have a sustained burst of good weather over the next few weeks it will be rather miserable.
  9. On discharge from hospital, we were told to administer ibuprofen and paracetamol alternately day and night, and to change her nappy every 3-4 hours. This means putting her to bed at the normal time (7ish) then getting her up at 11 or so for medicine and a nappy change, then back down again, then one of us setting an alarm and limping out of bed between 3-4am to do it again, then back down again until normal waking time at 7am. We’re bloody knackered. Worse, so is E. She seems to want to sleep longer and gets very annoyed with us constantly picking her up and flipping her over to do the nappy dance. It makes everyone grumpy.
  10. Before spica, we knew that we’d need to adapt or temporarily replace E’s highchair, car seat, pushchair and so on. We prepared as best we could, but the position of her legs (very upright) means that nothing quite works. She has to slump in her pushchair with one leg over the side. In the car seat, she needs to be at an angle so that her right leg can be posted in between the edge of the car seat and the car door (close it very carefully, now!) which means she’s on a slant with one shoulder higher than the other, which means the seatbelt isn’t secure. In the highchair, she will wedge in (just) but needs to lean back slightly, meaning food (if she eats any) goes everywhere and she can’t reach the tray to pick things up herself. Everything is slightly inconvenient and difficult, which makes the whole thing just a bit harder.
  11. We work. P commutes into London every day and M works freelance, with two current clients that require her presence for two days each per week. Up until now, E has been with a fabulous childminder during those working days. We interviewed widely and eventually selected the childminder on the basis of her willingess to take on a toddler in spica at some point (we didn’t know the precise timing when E started going, just that it would happen at some point) but now we are terrified that the childminder will take one look at her in her bulky, awkward concrete trousers and decide she can’t take her on during this period after all. And then what will we do? Plus of course there’s the realisation that even without daycare issues, its’ going to be nigh-on impossible to find someone reputable and experienced to entrust E to for an evening if we wanted to go out for a meal, for example. It’s been hard enough to do that even without the complications of spica care.
  12. Related to this, everyone else whose story we’ve read or who we’ve talked to about this seems to have either a) at least one parent not working/performing full-time childcare or b) extended family within spitting distance with apparently nothing else to do apart from provide childcare on a regular or ad hoc basis. Often, both (a) and (b) are true. In our case, neither is true. Our families are far away. We need to work. This feels unfair. Life isn’t fair.
  13. We were amazed how little support we got on the ward after E went into spica. Nobody showed us how to change nappies. Nobody provided information about how to hold her. Nobody checked whether we had a suitable car seat or pushchair. Nobody gave us operating guidelines about cast care, or things to watch out for. When the nurse came to sleek the cast (put water-repellent tape around the exposed edges to make it more robust and less likely to absorb leaks) she clearly didn’t have a clue what she was doing, and we had to do it again ourselves later, with the help of a youtube video and a friend. It’s a good thing we read up and researched so much in advance, because otherwise we’d be totally in the dark about how to manage this whole thing. So we’re not struggling so much as feeling unsupported by the system which has decided to put her into this situation.
  14. But above all, the hardest thing is knowing that she’s uncomfortable and you can’t do a damn thing about it.

On the other hand, there are several things for which we are immensely grateful:

  1. The love and moral support of friends and family. Whether they have been through this (or similar) before or not, people we know and are close to on and offline have been brilliant at sending good wishes, books, cards and texts at all hours, as well as offering support. The problem is, we don’t quite know how to take them up on it. We don’t feel able to say “come and entertain our daughter for a few hours so we can go to sleep”, even if that’s what we really want or need. But maybe we’ll get there at some point. In the meantime, just knowing they’re around and ready to listen to our whinging is good.
  2. Cbeebies. E doesn’t watch a lot of tv anyway, but it’s been an absolute godsend to know that if all else fails, her attention can be diverted away from whimpering by a few minutes of Sarah and Duck or Show me, show me. Those shows are worth the license fee all on their own.

It’s not all bad, and it will get better, or pass soon enough.

One week down, eight to go. Counting the days.

In the recovery room

The operation went well. The buzzer went off as we were drinking mediocre tea in the hospital canteen, and we raced to recovery. E was lying on a gurney, still sleeping, with two cannulas in the back of one hand and a striking pair of hot pink concrete trousers on her bottom half. The spica had been put on.

Actually, the cast is from about halfway up her chest (higher than I thought it would be) to the ankle of her right leg, and the knee of her left leg. Her legs are apart, though fairly flat, and not in the classic V shape or crawling position in which we’d seen other babies’ spicas set. There will be more to say on position later, no doubt.

E started to stir as I held her had and cooed her name. Unlike last time, when she’d woken angry and vocal from the anaesthetic, this time she was drowsy and starey. She blinked uncomprehendingly and moaned quietly before drifting into another slumber.

The recovery nurse encouraged me to pick her up and give her a cuddle to help her come round. We couldn’t figure out how to lift her. The cast was cumbersome and awkward. It didn’t support her neck and upper back, but where I would previously have scooped her up under the arms, now that seemed precarious, like it would put too much strain on the rest of her body due to the weight of the spica. And we couldn’t figure out where to put her legs. This is clearly going to be a steep learning curve.

We managed to find a position where she looked comfortable enough, but it still felt awkward. Her right leg stuck out at a funny angle from our cuddle, like it was trying to escape.

Here’s something they don’t tell you about fibreglass spica casts: they’re rough. My hands and arms were scuffed and scraped by the abrasive texture of the pink bandage-like wrapping. The stiffness and roughness of the cast was in marked contrast to the soft, floppy, still half-asleep toddler encased within it.

More waiting

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She’s in surgery.

We arrived early this morning (though not as early as we would have liked, thanks to south London traffic) and E was admitted quickly. Within an hour we were kissing her on the head and leaving her in the capable hands of the medical team. She went down brilliantly this time – smiling at everyone, no crying at all, making the sign for duck because she’d spotted one on the hospital gown. So proud of her.

And now we wait.

We got to speak to Ms D beforehand, and she explained the procedure:

  • Today: right hip. Open reduction and tenotomy with femoral osteotomy if required (this will involve metalwork in her femur if they end up doing it)
  • Spica (probably one leg to ankle and the other over knee) until the next surgery
  • In three weeks: left hip. Same as above.
  • Spica (probably both legs to ankle) for a further six weeks

The surgery today will take anywhere between 3-5 hours. We’re in the canteen, drinking tea and eating sweet Danish pastries.

And waiting.

The night before

Toddling down the road, two days before first operation

Toddling down the road, two days before first operation

We leave for the hospital at 0630 tomorrow morning, and expect the surgery to take place at some point tomorrow.

As far as we know (from internet research around the topic, rather than being told directly) the op should take about four or five hours. It’s probably an open reduction in one hip. Possibly the left one. She’ll be in hospital for somewhere in between two and seven days (no-one seems to be able to tell us) and then back home to normal life as soon as possible – or whatever passes for normal in concrete trousers. We are hoping she can be back with the childminder next week, and socialising with friends at playgroups, albeit somewhat less mobile than before.

Then three weeks later, it all happens again. We’re still not sure if the second op is going to be the same, or how long she’ll be in plaster after that. We don’t know if she’ll be in a brace for a while once removed from the spica. We do know that she’s brilliant and adaptable, and that children cope much better with spica casts than their parents. We

So here we are.

We’re angry that there have been so many cancellations, question marks and poor communication from the consultants and clinics involved.

We feel frustrated that this hasn’t been an easy fix.

We’re massively encouraged by the many, many positive stories and helpful posts and contacts by parents who are going through or who have had experience of DDH, harnesses, operations and spicas on the STEPS forum, Facebook, other blogs and elsewhere.

We’re nervous as hell about tomorrow.

We’re glad that she won’t remember any of this when she grows up. With any luck, in a few years she’ll point at her scars and ask us what happened, before getting back to climbing trees or whatever. It will be part of her story, but not a defining part.

We’re happy and relieved that she’s finally getting the operation that will help her live a normal, active, mobile life, after so long waiting.

We’re desperately sad that she has to go through this. Both P and I would do this for her in an instant if we could, but we can’t. All we can do, everything we can do, is provide love and cuddles in abundance, and pack a bag full of books, finger puppets and toddler-friendly snacks to take to hospital with us in the morning.

So that’s exactly what we’re going to do.

The story so far: part five (February until now)

In mid February, we received two operation appointments through the post, out of the blue – one in mid March, just after E’s first birthday, and one at the end of April. We prepared ourselves again, braced for the procedure and the aftermath.

Standing, leaning on mum

Standing, leaning on mum

Meanwhile, E was cruising around the room, standing on wobbly little legs and trying to climb everything in sight. It was noticeable that when she stood up, her bottom stuck out – she couldn’t straighten completely, because of the set of her hips. It was the first time that we’d been able to see evidence of her internal wonkiness.

E has always been very determined, and despite being told that she wouldn’t crawl, stand, cruise or walk, she has attacked each hurdle with vigour, sometimes failing, but more often finding her own way.

The idea of her being constrained in plaster, unable to move, has felt impossible to process, because she’s such an active, wiggly child – always moving, exploring the world with curious fingers, feet, mouth – tasting, prodding, fiddling with everything within reach, and quite a lot else besides.

Just before her birthday, a week before the operation, we got a phone call to say that both scheduled operations needed to be cancelled, and we should wait for another date. No reason was given. We scrabbled to reorganise the work we had cancelled, the family support we had lined up and so on – for the second time.

More waiting.

Then finally, more dates were offered. The very end of April for the first op, and mid-May for the second – only three weeks apart! We reorganised work cover, family support and cat care, but half-believed that it would be cancelled again at short notice.

In the meantime, we wrote to Ms D using the email address she provided, asking the questions we would have asked if she’d made it to the appointment to discuss the upcoming surgeries: what is the surgical plan? What’s the recovery time? How long in hospital? How long in spica? Questions, questions, all unanswered, despite phoning her office and emailing.

This time, the op hasn’t been cancelled – at least, not yet. And the op is tomorrow.

 

The story so far: part four

We set off for the hospital before dawn, and crawled through London commuter traffic to get there by 7.30. On the day-surgery ward, they gave E an ankle tag (which she promptly kicked off) and an oversized surgical gown, and we set about trying to distract her from her rumbling tummy with books and finger puppets.

Both hips

Both hips

By mid morning, we’d had a visit from the anesthetist and the surgeon, who had drawn two bold arrows on E’s legs, pointing upwards as if to say “wonky hips here”. Every hour, a nurse came to take E’s temperature and monitor her bp etc. As she fiddled with attaching the sensor to E’s wriggly big toe, E tried to fiddle with the nurse’s gold-thread-flecked hijab.

And then, about 11.30, it was time. P kissed E on the top of her fuzzy head and I carried her through to the theatre. She sat on my lap, beaming at everyone standing around her in gowns, then protested as I held the mask over her nose and mouth. She doesn’t like being constrained at the best of times and it was heartbreaking to see her fearful, tearful face as I held her tightly. In what seemed like minutes (but was probably only seconds) she grew limp in my arms and I laid her down on the table and kissed her sleeping face.

There were tears.

The nurse who took me back to the ward told me that was normal, gave me a beeper, and said it would buzz when she was coming round in post-op.

More waiting. I collected P and we went to the canteen for a lackluster cup of tea and a damp pastry, all the while staring at the pager on the table between us, willing it to buzz; terrified that it would.

Eventually after only about an hour, it did. We downed our drinks and hotfooted it to the recovery bay, bracing ourselves for the site of E in concrete trousers.

We heard her before we saw her. A hoarse, urgent screaming that sounded like confusion and fear. She was lying on a huge gurney, yelling, flushed and tearful. And bare-legged.

We were confused. Having expected E to emerge from surgery encased in a spica, the absence of one could only mean that both her hips had proved irreducible.

Her throat was sore (from intubation?) and the hoarseness of her cry was heartbreaking. Hungry, angry, hurt and confused.
We trundled her back to the main ward, and cuddled her, rocked her, soothed her until the wailing turned into whimpering, and then into soft breathing. She slept for forty minutes, before waking up in a marginally better mood and gulping down a bottle of milk.

The nurse with the distracting hijab came back and recorded her temperature and so on, and we showed E her favourite book – the one with the duck and the lion in it – which helped to pass the time.

Through the curtain, in the next bay, we could hear a couple arriving back with their daughter from surgery, shocked and confused. We got talking. Their 14 month old, M, had been in for the same investigation under anaesthetic (just one hop, though) with the same surgeon, but had come back sporting a pink spica that extended to her knees. They hasn’t expected that at all, and were wondering how they would get her home without a special carseat, and how they’d manage at home.

So there we were: us with all the practical kit lined up, expecting a spica cast and emerging without one, and them expecting just a big X-ray and being face with a much trickier outcome they hadn’t prepared for at all.

We offered to lend them whatever equipment we had, exchanged numbers and arranged to meet up a few days later. It was encouraging to see their little girl smiling and watching cbeebies, not seemingly that bothered by the concrete shorts. We held onto that image of a happy infant in spica. We knew we’d need it eventually.

After a few hours, Ms D, the surgeon, came to see us. She explained what we already knew – that the arthrogram had revealed that closed reductions wouldn’t work – and that she would see us at her clinic in the new year to talk about next steps. She may have explained in more detail what she was planning, but we were still reeling from the whole experience, wrangling a wriggly, hungry infant and found it hard to take it all in. I wish in retrospect we’d asked her to write it down, but instead, we got E’s discharge note and were free to head home. Unexpectedly free. It felt like we’d dodged a bullet.

Christmas came and went, and at the beginning of February, we attended the joint consultants’ clinic to discuss what would happen next, only to find Mr Z on his own. Ms D, it seems, had suffered a skiing accident which rendered her incapable of coming to the clinic – or, more worryingly, operating for the foreseeable future.

Mr Z only had the discharge notes that we had, and no idea what Ms D was planning at the next operation. He made some educated guesses, involving metalwork, osteotomies and so on – things we hadn’t heard anyone mention before, so we were surprised and concerned. But ultimately, he didn’t know what the treatment plan was, so the meeting was a waste of all our time, really. No idea what was happening, or when, and still two wonky hips.

We were in the dark. Again.

To be continued…

The story so far: part three

Sitting, aged 7 months

Sitting, aged 7 months

By the time September rolled around, E had been out of the harness for nearly as long as she’d been in it. She was sitting up, rolling from back to front (but not the other way, yet) and being an all-round charming little thing.

When we finally met with the consultants in September, when E was 6 months old, the Pavlik harness felt like a dim and distant memory. Three months is a long time when your baby is only twice that – half a lifetime! – and of course every baby comes with their own challenges and charms, with or without wonky hips.

Mr Z, our original consultant was present, along with his colleague from another hospital, Ms D, who would be performing any surgery, because apparently our local borough hospital no longer does operations for under-twos. (This came as something of a relief, to be honest.)

Ms D was the polar opposite of Mr Z. Where he was vague, she was precise. Where he waved his hands, she drew diagrams. Where he talked about possibility, she spoke of probability. Where he was distant, she was approachable. As we sat there, she filled a page with clear bullet-points and sketches, indicating her plan of action, which was:

  1. Perform an arthrogram (examination under anaesthetic, in which dye is injected into the joints) to have a proper look at the structure of the hip joints
  2. If it seems possible, perform a closed reduction on each hip then and there (manipulating the femur heads into the hip sockets manually, without making any incisions) followed by 12 weeks in spica with a cast change after 6 weeks.
  3. If one hip is reducible (can be popped back into the socket) via a closed reduction, but the other not (because of a blockage or something), do the first one, then at the time of the cast change, six weeks later, do the second, more complicated operation on the other hip, followed by another stint of 6-8 weeks in another cast.
  4. If neither hip is reducible, wait until E turns one, and do an open reduction on each side, followed by time in spica.

She gave us her email address and told us she wanted to wait until E was at least 9 months old to do the arthrogram and attempt a closed reduction, so that if she needed to follow path (3) above, by the time of the second op, E would be close to one, which is (for reasons we didn’t catch – possibly something to do with bone growth?) a significant age.

So we were sent away to wait again, this time for a date after E’s 9th monthiversary, in December.

Life continued.

We managed to get a few days away visiting family at the other end of the country, E’s first big journey.

Crawling, aged 8 months

Crawling, aged 8 months

She started crawling – well, dragging herself commando-style – across the floor, at 6.5 months.

We recalled another thing Ms D and Mr Z had said at the last appointment – that we shouldn’t expect E to crawl, given that both her hips were dislocated – she may not have the strength. And if she did manage it, we shouldn’t expect her to stand. And walking was almost certainly out. All these things were possible with one dislocated hip, but with two…

But E crawled properly, on all fours, around 8 months, as if she had heard them and decided to defy convention. Determined, that’s little E.

We finally got a date for the arthrogram, in mid-December, just after E turned 9 months old. Although there is no such thing as good timing in these circumstances, we calculated that this way, E would be out of spica just in time for her first birthday.

We tried to prepare as best we could for dealing with a newly-mobile baby in a body cast. Via the STEPS forum, we made contact with other local(ish) families who had gone through similar journeys, and thanks to their generosity and the camaraderie of fellow travellers on a difficult journey, we managed to get hold of some useful equipment – a specially-built spica table (like a desk with an integral narrow seat so the toddler can sit astride it and use the tabletop), a high chair without sides, to accommodate wide leg positioning, a bean bag chair.

We organised time off work, and extra hands in the form of family, to be around after the operation to entertain and support E when frustrated and confused after the operation. We were as ready as we could possibly be.

To be continued…

 

The story so far: part two

E in Pavlik harness in bouncy chair. She looks stumpy.

E in Pavlik harness in bouncy chair aged about three months. She looks stumpy.

(publishing again because of database weirdness)

So E was released from the Pavlik harness at 15 weeks old, because it hadn’t worked. This was a terrible blow, since everything we read and everyone we’d spoken to said that harness treatment for newborns fixed the problem in 90% of cases. But not E’s case.

The consultant, Mr Z, was from Eastern Europe and spoke in an avuncular, roundabout way. Although we’d had several meetings with him by this point, we still didn’t know how bad her condition was, what the prognosis was, exactly what would happen next. You could ask him a question, and he’d reply in a circular, hand-waving way which didn’t really answer anything. For example, when we asked “which hip is worse?” he’d reply “worse is a….relative term. What is worse? Worse than a normal baby hip? Yes, but worse is not so much of a problem in life…”

Of course, all communication had been rendered even more impractical by the fact that as he talked to us, we had to wrangle a small, impatient, hungry baby, often yelling in protest at the fact that Mr Z had just rudely dislocated her hips again through manipulating them to see if he still could. He could, and she let us know, loudly.

So at the fourteen week meeting in June, he’d made references to surgery, spica cast, hip braces, arthritis, hip replacements and limping. We were left reeling, with no firm plan of action except an appointment with Mr Z and his colleague from another hospital, Ms D, who would give us a second opinion at the beginning of August. In the meantime, he said, don’t bother with the harness anymore.

In five minutes we went from obeying the harness instructions religiously to…doesn’t matter. That felt strange. Stranger still for E, who suddenly found herself with limbs she didn’t know what to do with.

We walked out of the consultant’s office, still unsure what the next steps would be. Still rather dazed from being told the treatment had failed, we decided to make lemonade, metaphorically-speaking: we went to mothercare on the way home and bought E some leggings and tights, which had been off-limits for the previous three months entirely. Bittersweet lemonade, though, knowing that they’d be taken away from her again in due course.

E in cot, wearing the Pavlik Harness. We had to chop the feet off most of her sleepsuits so they'd fit.

E in cot, wearing the Pavlik Harness. We had to chop the feet off most of her sleepsuits so they’d fit.

Ever since E had been placed in the Pavlik harness, we had been in touch with an amazing charity supporting people (especially children) with hip conditions and lower limb deficiencies, called STEPS. They had sent us sheafs of printed information about things we could and couldn’t do with a baby in a harness, and scary-looking pamphlets about coping with a baby in a spica cast which we had been too scared to even look at, and hidden in a drawer. After the fourteen week meeting with Mr Z, we headed home and got the scary leaflets out of the drawer, and began to read about all the possible things that could happen next: arthrogram, closed reduction, open reduction, adductor tenotomy, avascular necrosis. Vocabulary that was entirely unfamiliar but would become only-too-well-understood.

The night after being liberated from the harness, only the ninth night she’d spent without it in her entire life (and I’m guessing the first eight days out in the world didn’t count) she kept waking herself up with a moro reflex. She’d drift off to sleep and then startle, as if falling. Her limbs would shoot out and she’d wake up, alarmed. Strange having legs again.

Strange, also, to suddenly have to learn how to do tummy time, which had proved impossible in the harness because of the set of her legs. We deployed mirrors and playmats and babygyms, and encouraged her to lift her upper body, kick out at dangling chimes and toys.

Rolling to the side for the first time. Nothing was going to stop her.

Rolling to the side for the first time. Nothing was going to stop her.

Two days after coming out of the harness, she started to roll over for the first time. It seemed that she wasn’t going to let the constraint of the first few months of life stop her from developing, and we found this enormously encouraging.

Go, little E, go!

And so, we just got on with life as the summer progressed, while waiting for the early August joint consultants’ appointment.

A week before it was due to happen, a letter arrived telling us that it had to be postponed until September because one of the consultants was on holiday. Annoying. So we carried on waiting, because we could do nothing else.

There’s been a lot of waiting. First, we waited for her to arrive. Then we waited for the Pavlik harness to have an effect. Then we waited for the consultants to get back from holidays. And there’s been more waiting since then (of which more in due course). But the thing about waiting is it’s not just frustrating for the impatient; it also means life gets put on hold.

For example, we couldn’t book a summer holiday, because we thought there’d be a consultants’ appointment in the middle of the summer and we didn’t know if they’d want to start surgical treatment straight away. Then when they cancelled the clinic, it was too late to book anything.

Another example: before E was born, I was really looking forward to taking her swimming. I researched local lessons and planned to sign up for a term as soon as we could. We couldn’t go when she was in the Pavlik harness, for obvious reasons, but after that, there seemed little point in committing to a term of lessons when we knew that she’d be going into concrete trousers – a spica cast – at any moment. And that moment kept moving.

So we kept waiting, and not making plans.

To be continued…