I hope that none of my regular readers (all 10 of you ;-) ) ever need this information, but I wanted to share what we have learned from our experience of having a toddler in a spica cast – just in case it proves helpful someday to another parent who is facing the same journey. I don’t remember where I read it or I would link to it, but one blogger compared having a child in a spica cast to being inducted into a club that you didn’t want to join. :) I think that’s pretty accurate. So here are my tips, for what they’re worth.
**This is really long but I wanted to keep it all together rather than splitting it up into multiple posts.**
Ava was diagnosed with hip dysplasia when she was 18 months old. She had a closed reduction surgery on the left side when she was 19 months old. She was in a spica cast for 14 weeks (and two days, but who’s counting :) ).
In hindsight, the anticipation of what to expect during this experience was the worst part. Well, actually probably the time Ava was out of my sight, in the operating room was the worst part. But the anticipation was tough. Most kids go into a spica cast for one of two reasons: hip dysplasia and femur fractures. When a child breaks their femur it’s unexpected and usually very painful for the poor kiddo. With hip dysplasia, you know in advance and have a bit of time to prepare. Also, for us at least, we don’t think Ava was in pain – or at least not much – beforehand. But the time in the cast is usually longer for hip dysplasia than it is for a femur break – 12 weeks versus 6 weeks (those seem to be the norm for each from what I’ve read). So there are definitely differences in the circumstances that bring a child into a spica cast. When we found out that Ava was going to need surgery on her left hip for hip dysplasia, Kevin and I had different approaches to our online research. He stuck to medical sites and I scoured the Google-net for tips and what to expect and personal stories written by other parents who had gone through this as well. I think together we made a good team on gathering info to prepare ourselves.
Anyway, my tips on how to spend the anticipation phase (provided you are allowed that luxury) is to educate yourself on what to expect. I think it’s less scary to face an immobile toddler when you have a bit of knowledge up your sleeve. Check out the tips on spica care that some medical facility websites have. Read blog posts about people’s individual experiences. Watch YouTube videos on diaper changes and how to keep the cast clean. Request an add to the Hip Babies and I Love a Kid in a Spica Cast Facebook pages. Most importantly, ask questions of your surgeon/doctor/nurses. We are incredibly blessed to have THE most responsive surgeon/orthopedic doctor in the world. He usually responds to my emails within an hour. He is the one familiar with MY child and OUR situation. He has more insight (and is more reliable) than anything I could possibly read online.
From the beginning, my goal was to hear the words, “This is the cleanest cast I’ve ever seen,” from someone. Goal met at the 4 week check up! Both the cast room crew and the doctor said those exact words, and the doctor pushed the cast change, which was supposed to take place at 6 weeks, out to 8 weeks. And even after being in the cast 8 weeks, it was the cleanest they’d ever seen. I credit our clean cast to a few things (but really – honestly – so much of it is probably luck, so seriously – don’t beat yourself up about a dirty cast. IT HAPPENS.).
- Frequent diaper changes is the first. We would go through 5-6 diapers in a day for our 21 month old daughter. Urine leaks in particular are inevitable though. We would use a blow dryer to dry the cast (there is something called a Cast Cooler that I was tempted to get but I read that it doesn’t work well with a goretex lining, which we had, so I saved myself the 40 dollars) and then a drop of lavender essential oil on the cast. Fortunately that seemed to work well and we never had a stink problem. I think we had a bit of a poop incident one time and we used a damp cloth wrapped around the end of a spatula to clean that. Then we used the blow dryer on cool to make sure the inside of the cast was as dry as possible after that damp cloth.
- The second thing that helped us keep the cast clean was putting an apron over the cast when Ava ate. My mom made us two aprons and I used the one that I keep (and never wear) in the kitchen. One of those baby receiving blankets you get at the hospital worked well too – we just twisted the ends into the straps of Ava’s booster chair (more about that below) and it held snugly. You could use a large dishtowel, or go to a thrift shop and buy up a few inexpensive aprons. Just something to keep food and drink off the cast.
- We had a goretex lining on our cast and when it started peeling up on the edges, we put duct tape around it. Before we went into the cast, Ava and I made a run to Hobby Lobby and I let her pick out a couple of fun print duct tape options (she chose cats and beluga whales and tropical palm trees). They never seemed to irritate Ava’s skin, but you could put moleskin over the duct tape if it appears to be rubbing on the child’s skin. Ava liked looking down and seeing the cats on her cast, so it was kind of fun.
- Honestly – we just didn’t give Ava the opportunity to get the cast very dirty. She was never really allowed to drag herself around in the cast like some kids do because we were incredibly focused on keeping the hip as stable as possible. We didn’t want some fluke thing like her army-crawling in the cast to jar the hip and cause it to come out of place. I can totally see how an older kid would be harder to keep stationary. Also my cousin Kelly put me in touch with her friend whose daughter had basically the same experience (and even the same surgeon/doctor!) in terms of age at time of surgery, etc. and they live on a ranch. The nature of their lifestyle was just different and it was inevitable that the cast was going to get dirtier than our “city cast” would.
As mentioned above, we used an apron to cover the cast anytime Ava was eating. I think this made a huge difference in maintaining cast cleanliness, because, well, toddlers aren’t the cleanest eaters. Ava did not fit in her high chair with the cast so we used this First Years Booster Chair because it doesn’t have sides. It’s also very portable, easy to set up, and it worked great when we ate out in restaurants. Ava spends time at Kevin’s parents’ house and we eat dinner there once a week so they got the same booster chair. We’ve been very happy with how it worked for us and I highly recommend.
We were fortunate that Ava’s diet didn’t seem to change while she was in the cast. I have read that some kids lose their appetites, etc. so it definitely varies child to child, but she did great and was eating spaghetti the night of the surgery. I do think it’s important to give a kid in a spica cast smaller, more frequent meals/snacks because if their little bellies get too full they can press against the cast and it would just be uncomfortable. It also stands to reason that smaller, more frequent meals/snacks contribute to maintaining more regular bowel movements which makes a blow out diaper situation less likely.
We bought a bed wedge prior to the surgery and set it up in Ava’s crib on the first night after the surgery. It wasn’t a perfect fit, width-wise, so I stuffed some towels along the edges (between the wedge and the crib walls) to keep it snug. The primary purpose of the bed wedge was gravity – we wanted anything coming out overnight to move down into the diaper rather than up her back and into the cast. I do also think that it helped to prevent the cast rubbing on her skin for her to be angled rather than flat on her back because in the cast, she couldn’t really be flat on her back. The memory foam cushioning of the bed wedge also seemed like it would be more comfortable than the flat, harder crib mattress.
I was so worried about how Ava would sleep in the cast. She was accustomed to moving around a lot at night, sleeping on her tummy, sleeping on her side, etc. so we didn’t know how she would do with the cast restriction. Kevin and I took turns sleeping in Ava’s room on the first night. She was pretty well medicated but had the epidural medication coming out of her system, so I don’t think she was in pain, but she did have a hard time getting comfortable and she was super chatty and kind of wired. The second night we slept in her room again and she did a bit better about settling herself. On the third night, we were prepared to go in with her but just followed our normal bedtime routine and she slept great through the night. In general, she slept so well through the night in the cast. There were some nights when it was harder to get her to fall asleep initially and there were nights when she’d cry out and not settle herself back to sleep on her own. Were these because of the cast? Who knows. It could have been normal toddler stuff that would have happened anyway. I was really worried she’d roll herself on her stomach and not be able to turn back over, and therefore we probably checked on her when she was crying a bit more quickly than we otherwise would have. We did find her on her stomach once or twice, but in general I think she knew that she couldn’t roll herself back over so she’d only go on her stomach if she was really upset. So again – every kid is different, but have hope – some of them learn to sleep just fine in the cast
If there is one thing that you NEED, it’s a spica chair/table. We ordered ours from Ivy Rose Spica Chairs (I ordered it in plain blue and added the wall decals – found on Amazon – to spruce it up) and Kevin’s parents also ordered one from that company. We each experienced a few very minor hiccups with installation and shipping (I’d recommend asking the owner for the tracking information on the shipment so you can keep an eye on it and I’d recommend an electric screwdriver for installation – and cross your fingers there isn’t a knot in the wood like we experienced in one spot), but once the chairs were set up, any frustrations we had melted away. Ava LOVES her chair-chair or special chair, which is what we call it. It has an awesome desk space, she can sit upright rather than being forced to lay back at an angle, and…really. I just can’t rave enough about how critical this piece of equipment was for us. There are instructions online for building your own spica chair, and there are Facebook groups where people have them for sale or even offer them up for free.
We tried to introduce new activities or a new toy every 5-7 days and we cycled through a lot of the same toys over and over. Sometimes a toy would go on “vacation” and be tucked away for a week or two. Then when it was reintroduced there was a renewed interest in it.
We definitely indulged in more screen time than is recommended for toddlers, but I think that’s normal and I don’t feel in the least bit bad about it. :) Ava fell in love with Daniel Tiger during her time in the cast. We found that a bean bag (Ava did get really sweaty in the bean bag if she sat it for more than 15 minutes) or this great Infant to Toddler rocker were best for TV time.
What to Wear
Onesies, sized up one or two sizes so they fit over the cast. Seriously. That’s all that’s needed. We bought 10 or so 2T onesies and cycled through them. Ava had a little capsule wardrobe while in the cast. :) I loved the peace of mind that onesies brought because they were snapped and she couldn’t stick toys, food, etc. into the cast. She slept in long sleeve shirts, again – sized up and it’s ideal if they’re a bit wide at the bottom so the fit over the top of the cast well.
Now we did have this experience in the summer, so I am not much help for recommending pants that would work during the winter, but I imagine you can size up a bit and use sweats or “track pants”.
Utilizing Your Resources
Ask to borrow toys from friends. Train some people you trust in cast care so that you can get out every once in awhile and feel confident your child is in good hands. Join a Facebook group or two to ask questions and learn about what to expect. Have friends come to you for play dates because you’ll be more equipped with seating options for your child.
Outside the House
We ate out a lot less while Ava was in the cast but the booster seat linked above was very portable and worked well for us when we did eat out.
Our hospital provided us with a Britax Hippo carseat. Ava loves facing forward, so that was one fun perk of this ordeal, from her perspective. :)
A stroller that accommodates the cast is probably my second biggest must-have (after the spica chair/desk). Ours worked – much to my relief! Getting out for daily walks was so so so good for both Ava’s sanity and ours. And our health! Kevin took Ava to the zoo a couple of times and used the stroller, and we continued to do our weekly grocery shopping as a family with the stroller (Kevin would push her in the stroller and I’d take charge of the cart).
Most sites recommended a little diaper (like size 1) stuffed up in the cast with a big diaper (size 5 or 6) wrapped around the outside of the cast. My friend Shawna put me in touch with her friend who had a daughter with hip dysplasia and she gave great advice – don’t use a small diaper because it is just not able to handle the amount of pee or poop an 18 month old will produce. Instead, use the normal size diaper, tear off the fastener tabs so they won’t rub the child’s skin, and stuff it up into the cast, spreading it out as best you can, so it’s nice and snug. The opening in our first cast was quite small and we still managed to use a size 4 which is what Ava was using before the cast. Then we did use a size 6 around the cast and snapped the onesie over it.
We did very frequent diaper changes through the day, but Ava went 11-12 hours overnight without a diaper change and we had pretty minimal leakage issues – probably because we were using the appropriate size diaper for her.
Ava loves baths so we were all sad about not being able to use the tub. She was a great sport about our method of cleaning her though. We would put a blanket on the kitchen counter, roll up a towel and put it by the sink as a prop, and then put her face down on the blanket with her chest on the rolled up towel. We would run the water to fill the sink 3/4’s full or so and she would splash in the sink, play with a few tub toys, etc. We would use a cloth to wipe her down as best we could. When ready, we’d turn her over so her head was over the sink and we’d wash her hair. I liked to tuck a hand towel around the back of the cast so the water didn’t drip down into it when we picked her up.
The cast removal was traumatic for all of us. We had tried to prepare her with the episode of Daniel Tiger where the Neighbor gets a cast taken off, but nothing can prepare an almost 2 year old for a loud, vibrating saw being lowered to their body as they’re held down on a table. She was sobbing, I was sobbing; it was horrible. We tried to put headphones on her and played a YouTube video she likes (make that LIKED – she still has PTSD and won’t watch it now), but nothing could block the sound, let alone the feel, of that saw. I have no tips to share here. Maybe ask if they can give the “happy juice” they give before taking the child back for surgery? Or a laughing gas? I don’t know if those are even options. Just prepare yourself and hope for the best. It’ll be over quickly.
I was 21 weeks pregnant with Owen when Ava was diagnosed with hip dysplasia. She had surgery when I was 25 weeks pregnant and I had the baby 4 days before the cast came off. So I was in my third trimester for the vast majority of the time in the cast. It was tough, no doubt. It became uncomfortable to sit and hold her on my lap as my stomach grew because the cast was completely unyielding. People would joke about how convenient it was for me to have a ledge to set her on when I carried her, and I’d smile politely, but inside I was rolling my eyes and wondering if they really thought it was comfortable to have a hard cast resting on a baby bump. (It was not.) My doctor gave me no weight restrictions on what I could carry and just reminded me to lift and set her down with proper form to keep my chances of a pulled muscle or tweaked back at a minimum since the hormones made those things more likely. By the end of the pregnancy it was really hard to put Ava in her crib because of the belly interference and the angle at which she needed to be lowered. But we survived and I was beyond fortunate to have such a wonderful partner in Kevin through all of this. He always encouraged me to rest, to keep sleeping while he went into Ava’s room if she woke in the night, etc. I pray that anyone – pregnant or not – who has to have a child in a spica cast has a good support system because that truly is so important.
There will be a little repetition here, but our “must have” equipment – all mentioned above in some form or fashion – is as follows:
First Years Booster Chair
Spica Chair/Table – this is the ultimate. GET A CHAIR/TABLE – if not from Ivy Rose, from somewhere. It truly is a sanity saver.
Infant to Toddler Rocker
Stroller – we have the BOB Motion Travel System which is not available for sale online, per Buy Buy Baby’s website. We’ve been really happy with it as a single stroller and were so relieved that it worked with the cast.
I promise what “they” say is true – your family will find a new normal routine soon, your child is more resilient and stronger than you can imagine, and the days will be long but the weeks will be short. In hindsight, I can appreciate our experience because it forced us to be very present with Ava. I truly believe that her verbal skills are advanced for her age because she could focus on that development while her gross motor skills development was stalled. Trying to focus on the positive went far in keeping a good attitude (I did a 100 days of happy photo challenge on Instagram. Day 1 was the surgery. Day 101 was when the cast was removed.). There were tough moments when I felt really overwhelmed and sad and bitter that Ava was missing out on walking/running, but I know how fortunate we are that hip dysplasia is 100% fixable. Our journey isn’t over – for Owen or for Ava – and I pray every day that we avoid any future surgeries. The future is always scary, isn’t it?
I’ll do another post sometime about the rhino cruiser brace and what we’ve learned in it. And the Pavlik harness (which Owen is currently in). Goodness, I’m just a wealth of knowledge when it comes to hip intervention equipment, now aren’t I? :)
If you have questions about our experience, please leave a comment. It was so, so nice to have Shawna’s friend and Kelly’s friend to ask questions of and get feedback and empathy through this process. I’d love to pay their kindness forward someday to another family.