Our granddaughter was diagnosed with hip dysplasia and was fitted with a spica cast a couple of years ago. This was an unexpected medical diagnosis that would require the combined creativity of a half-dozen people so we could help entertain one little person for the next ten to twelve weeks. It was our own family version of Survivor and it left me with a new compassion for parents who are faced with caring for a medically fragile child. This post is the one I wish someone had written for me!
What is Hip Dysplasia?
Hip dysplasia occurs when the hip joint and the ball of the femur (femoral head) do not develop in a normal way. The result is that the hip can slip out of joint. Most of the time, a pediatrician will catch this abnormality and it can be corrected early in an infant’s life. But in our case, the diagnosis came much later, just after our little one started walking. Her parents started noticing odd things like one leg looking shorter than the other one, or an uneven gait when she walked. Her diagnosis came at almost 18 months. That meant surgery and a long recovery in a body cast known as a spica. The cast keeps the hips and the affected femur completely immobile but requires the legs to be bent at odd angles. This becomes a real challenge because sitting up normally is no longer possible and the usual baby equipment won’t accommodate the rigid cast. Diaper changes are a special challenge.
Home after the same-day surgery to heal her hip dysplasia, this little one (we will call her M.) was especially uncomfortable for the first few days as the surgical site healed. The spica cast is designed to hold the femur in place while everything heals, but it’s not hard to imagine the discomfort.
My purpose here is simply to share some of what we learned about how to entertain our little M. who woke up one day to find herself essentially immobile. Even without the pain of the surgery, it felt like we had somehow betrayed her, and emotions were high and heavy.
For this Grandma, the best therapy was play therapy. And I’m talking about therapy for the worried Grandma.
Transportation Essentials:
The hospital loaned us a custom car seat that would accommodate the angle of this toddler’s legs and still keep her safe. For the first few exhausting days, her parents and grandparents took rotating shifts so that Mom and Dad could get a little bit of sleep, and sometimes a ride in the car was the only thing that would settle M. for a nap.
We developed a quick appreciation for tools designed for special needs individuals. This shopping cart was one example. She could ride comfortably while Mom and Dad did a few loops around the grocery store. Short outings like this were helpful.
The stroller couldn’t accommodate the angle of the spica cast, so a wagon fitted with soft blankets was a great way to trek around the neighborhood for a walk in the sunshine.
This was hard on everyone, but especially on a typically happy little girl who couldn’t yet talk well enough to communicate her needs. Lots of family members stepped in to help out, but Mom and Dad bore the brunt of the load. The Grandmas, Aunts, and Grandpa L. took regular caregiving shifts, so Mom and Dad could work in the daytime.
Dinnertime seating challenges were tackled with a thrift store find that had a snap-on tray…
…and eventually with a canvas seat that could be strapped to a bar stool.
Mom and Dad felt it was important to give her as much independence as possible since so much of her mobility was limited by the spica cast. There were no perfect solutions, but with a lot of trial and error, we found economical substitutes for most of the baby equipment. She got very good at communicating when she was ready for a nap. It was almost comical how grateful M. seemed to be when she could finally lay down in her crib, exhausted and ready for a break.
All worn out! Fortunately, the wide-bottomed sleep sack and the crib were accommodating and the spica cast fit just fine. M. wore an additional brace when she was sleeping.
That Brings Us to Clothing and Hygiene:
As mentioned, diapering was a challenge. Her mother said, “We got pretty good at re-moleskinning the cast and had a large supply of rinse-free bath wipes that kind of helped us feel better about hygiene. That said, our house just smelled like a latrine for ten weeks!” The setup in M’s case was that the surgeon left an opening in the lower crotch area so that the pee and poop had a way to escape. We’d fold the outside ends of a clean diaper back and insert the diaper right inside of the cast nest to M’s skin, being cautious not to injure the surgical site. Then a second, larger diaper fit over the top of the outside of the cast to hold everything in place. Your nursing staff will train you on these kinds of details.
The moleskin covered the raw edge of the cast and helped protect her skin from scratches, so Mom would change that out periodically. She also kept matching purple duct tape on hand. It was helpful when the edges of the purple cast were worn raw as M. moved about.
M balances on a ball with Grandma L’s help so she can get to the stuffies in her toy basket. An oversized, comfortable shirt or a dress made up the typical outfit.
M’s parents also bought inexpensive, loose-fitting clothing, typically dresses from the clearance rack in a size up from her actual size. These could drop over her head easily. An assortment of cozy slippers for her feet was important as well. The cast was great at snagging clothing, including Mom and Dad’s best shirts and blouses. We all learned to avoid wearing clothes we cared about a lot when we were packing M. around. The extra weight of the cast plus the baby built everyone’s biceps up a bit.
The First Three Weeks: Short Attention Span, Loooong Days…
By necessity, the main living area was also the play space. Once the surgery site was healed and the pain had subsided, the biggest challenge was entertaining a toddler who had been accustomed to running and crawling and playing. It became a real challenge to find things that would occupy her short attention span. M. was typically propped up on the couch cushions or on a large beanbag chair. She was immobile except for her head, arms, and hands.
A Word about Screen Time:
M’s Mom says it best: “It’s okay to let go of your ideals around screen time if it means a few moments of peace here and there. We probably watched every episode of Curious George ever produced during the 10 weeks M. was in her cast. That was a guilt-inducing thing for me that I had to get over.”
During the rest of the day, it was a constant challenge to find activities that would help keep M. engaged and content. Toddlers are notorious for their brief attention spans and this is age-appropriate, but it presents a challenge for caregivers. Here are some of the things that worked well for us.
Toddler Entertainment: Toys That Made the Cut
Rhythm instruments, age-appropriate Lovevery play kits, and toys that she could scribble with.
A felt quiet book, a basket of board books, magnetic tiles
One helpful piece of equipment was an inexpensive lap desk with compartments on the side. M. could be propped up with a pillow underneath her and the lap desk gave her a playing surface. The compartments could hold everything from crayons to snacks and sippy cups.
Sensory bins and sensory toys were a fan favorite and you can find dozens of ideas online:
M. loved dyeing easter eggs in Cool Whip mixed with food coloring.
Once the obvious toys that were already around the house got boring, we had to get more creative. Almost any house is full of toys that don’t look like toys at first glance. A box of Kleenex to be emptied one sheet at a time. Jars full of colorful pom poms to dump out and put back in. Silicone cupcake liners to stack and unstack. Chenille stems to bend and twist. Straws to poke into a dish drainer. Golf tees to poke into a square of pegboard or a sheet of styrofoam. Games that used M’s small motor skills entertained her well since these presented just the right level of challenge.
A furniture dolly padded with blankets and pulled with a strap made a great indoor ride-on toy. We poked pretzels into PlayDoh and threaded Cheerios onto the pretzels. When we got truly desperate, a big square of pilled styrofoam was fun to pull apart!
And don’t forget bubbles! One innovation that proved to be helpful was covering a giant beanbag chair with a fitted sheet that could be laundered. This helped her sit comfortably for long stretches.
This is not all that different from entertaining a mobile toddler. It’s a LOT of work, regardless of the medical situation. The best entertainment for M. was being with people she loves and being included in their daily lives. She loved sitting in an open stroller and playing the piano with Dad.
Weeks 4-7, Developing Strength to Crawl, Sit, and Stand Again Wearing a Spica Cast
Children are incredibly resilient and adaptable. Watching M. at this stage really reinforced this. She seemed a little less distressed. As she adjusted to the new normal, every day turned into a full-body workout. This was hard and required a lot of exertion, but she adapted quickly. It was amazing to watch. We are thrilled when a baby learns to roll over, crawl, and walk. But a toddler fitted with a spica cast must learn all of those skills twice.
Learning to move about again took a lot of patience and concentration!
In the beginning, it took just a little encouragement to help her find her way again. Here, Grandma L. is helping her practice crawling. As our little one adapted and strengthened her muscles, we just stood back in awe and watched. At 6 weeks, a new cast without the support bar between her legs helped give her just a little more flexibility of movement.
Halfway through and a fresh, new spica cast
Mental Health Breaks
The adults developed some new resiliency as well. Difficult experiences are like this. They tend to stretch us in ways we did not know we could stretch. We learned quickly how important it was to create some self-care space. Mental health was especially important. As the grandma, I took a 3-day break to get away with other grandchildren on a short vacation. Mama took a short weekend getaway to a tulip festival with her sisters-in-law. The homecoming was especially sweet!
While Grandma and Mom were away, Grandpa and Dad were supposed to hold down the fort, but Grandpa got sick, which left Dad totally on his own for 3 days. He not only adjusted, he packed the little one up and took her on an adventure hike to do some rockhounding, something he had wanted to do for a while.
M. thought this outing was great, including the discovery of their first trilobite!
She wasn’t happy about sharing her rocks for the photoshoot!
Good Nutrition, Sunshine, Exercise: Keys to Good Mental Health During Stressful Times
As M’s muscles strengthened, she was able to do a few more things and we felt safer leaving the house. In milder weather, she loved sliding and swinging at the park (bless the soul who created adaptive swings and playground equipment for special needs children). M. also loved to sit in Grandma’s parked car in the sunshine and push buttons.
Trying out the balance bike.
Getting some rays at the all-abilities park.
When M. could sit for longer stretches, she loved to color, eat snacks, or do both at once. Taping sheets of paper to the counter so they didn’t move gave Mom just a few minutes of free time to make dinner while M created art.
We played with puppets, blocks, and the marble maze from Grandma’s Toy Library. An assortment of bed pillows and nursing pillows helped us adjust her into a variety of comfortable positions. Once she could stand up with the support of the couch, we could remove a few cushions and she could play basketball with a collection of balls (Mom added a cooler at the bottom to capture balls so we didn’t have to chase them across the room).
basketball with a cooler to shag stray balls
We made good use of a season pass to the local children’s museum. The sand and water table at the dinosaur museum was especially fun. Every day became an adventure in adaptability and using creativity to figure out new ways to help her continue to develop and play in ways any toddler would enjoy. It was important to us to find as many creative ways as we could to help her developing brain continue to build healthy neural connections.
an outing to the dinosaur museum
Weeks 8-11 – The Home Stretch
Tenacity is a Learned Skill in a Spica Cast
drawing on a ceramic planter with sidewalk chalk
Once she could sit on her own again (those core muscles reallllly got a workout!) she would create her own games. She loved drawing on the side of Mom’s ceramic planter with sidewalk chalk (she couldn’t bend enough to write on the ground). We discovered that some children’s toys would accommodate the odd angle of her legs and hip joints, and cousins and neighbors who were anxious to help offered additional toys and games that could be borrowed for a week or two.
Enjoying toys borrowed from family members
After 9-10 weeks, nothing seemed to stop her. She adapted remarkably well to her spica cast and could almost play independently again. The hamstrings and calves on her left leg had a lot of catching up to do once the cast was removed.
Last Day in a Spica Cast: What We Learned
Headed out to have the spica cast removed. This was a big celebration day!
The day the cast was removed, we went prepared with an assortment of snacks and distractions including headphones to help her be less alarmed at the sound of the saw cutting through the fiberglass cast. We needn’t have worried. She was content watcing Elmo videos on a smartphone as the cast was removed, and actually giggled at the vibrations. This may not be every child’s experience, of course.
Her leg muscles were weak and it took some time for her to re-adapt yet again. She couldn’t walk without support for a few days, and was upset by this. But with a few more days to adjust, she was soon climbing, crawling and walking again. What an adventure! From February through May, we struggled together as a family while M. showed us how much courage a little person possesses. The prognosis for a full recovery as her leg and hip continues to heal and strengthen is a hopeful one.
Reflection is Good Therapy
I suppose this blog post is as much therapy for me as it is intended to be helpful to other families who might face a similar challenge. Coping with a serious medical diagnosis is hard, and for us, it became a family affair. Watching people you love suffer can create suffering for you as well. Mom and Dad had to navigate a grieving process. They felt guilty for the pain they were putting her through, distressed at the look of betrayal she seemed to have in her eyes. They felt exhausted from lack of sleep. The strain was very taxing, and they had to be OK with asking for help and speaking up when they were overwhelmed and needed support. They had to allow themselves to cry. To feel the anger. To feel the sorrow. To hope for a full recovery.
As grandparents, we had to learn how to see when more help was needed, and when to offer space. Sometimes, the most helpful thing was to spend a night sleeping over and attending to the baby’s needs during the night so that Mom and Dad could just get a sound night’s sleep. This was especially important the first evening home when Mom and Dad were already physically and emotionally drained.
I learned not to offer to clean the kitchen, but rather to offer to play with the baby so they could. Small services like bringing in a meal also seemed helpful. My job was to ask how I could help and then listen for clues. Mom and Dad are strong, capable adults and I’ve never been more proud of them. They were magnificent in this moment of real difficulty.
If you are facing a similar challenge, know that although this will be very hard, you will make it. Assemble a large support system. You won’t do well if you try to handle this alone.
Some Survival Tips:
- If grandparents and other family members are not nearby, you can access support through the hospital social workers.
- You may also be able to find some help with respite care on websites like care.com.
- Allow close friends and family members to assist. Don’t push away well-meaning people. They want to help but may not have any idea how.
- Be specific in communicating your needs. Keep a list if possible. What is overwhelming to you may be a simple errand for someone else.
- Most people don’t mind being inconvenienced when they know they are being truly helpful.
- Keep boundaries. It’s also OK to tell people what you don’t need
- Try not to let inappropriate comments trigger you when they aren’t helpful. Let this kind of thing go.
- If you aren’t comfortable with people offering homemade meals, ask if they could pick up a meal or Doordash something from a location you trust.
- Try grocery delivery.
- Consider hiring housecleaning help.
- Your city’s recreation department or library may have toys you can borrow. Thrift stores are another option.
- Let go of everything unnecessary and simplify. Your priorities will shift for a while, but it’s temporary.
- Pay attention to your own physical and mental health. You may feel selfish taking breaks, but this is a long marathon and breaks and self-care are extremely important!