Adjustments

Following our harsh check-up early November, Jonas and I took a drive down to London to see Sam Walmsley at the London Orthotics Consultancy clinic in Kingston upon Thames.

It was an extremely long day for us, 4 hours' drive to the appointment, then back up the road the same day (adding in some traffic jams...). We were lucky enough to meet a new friend there and Sam did an amazing job with the brace adjustment. He reduced the abduction force on it and did a full check-up on Jonas's foot, throwing in some new insoles to support the formation of his arch and try to counteract the "knee collapse", as I call it.

Jonas also went back to the osteopath, who pointed out that Jonas showed signs of valgus in both knees and that the muscle loss in the left leg could be the reason behind his new and unbalanced gait. He also said that if Jonas's bones had been reset even just 1 mm off their normal position, the deviation caused over the length of his tibia and fibula would likely affect his gait. He gave us some exercises to do to strengthen his leg, but did say those would be more suited to older children and to just try and see whether Jonas would be able to do them (the answer is no... 😔 )

Thankfully, between the brace and me stretching his foot manually at night, Jonas seemed to regain his flexibility.

The day our world turned upside down...

On 17th September, Jonas broke his leg. We were driving around and the kids were getting a bit too agitated in the back. We saw a playpark on the side of the road and decided to stop to let them run free, before heading home. Unfortunately, they didn't make it to the slide. The entrance to the playpark was nothing else but a cattle grid!

(My husband's foot... A toddler's foot
had absolutely no chance)

I let the kids out of the car just a few meters away from the entrance of the park and told them to go for it, whilst I got a coat from the boot. From where I stood, the grid was invisible, I heard screaming, turned around and saw him on his back. At first, I didn't even realised he was trapped. I rushed to him and got him out of the grid, hoping that he'd just got a big scared and was too tired to calm down.

Obviously, that would have been too easy and we ended up in A&E. An X-ray showed that he'd fractured both his left tibia and fibula, right below the knee. It felt like being punched in the stomach. What else could go wrong?

I was told he'd need to be casted for 6 weeks. I explained to the A&E team that he had been born with left clubfoot and would need to be cast accordingly, with his foot in abduction and dorsiflexion if possible. 

They got a nurse to quickly put a back-slab on his leg and she casted his foot in supination and plantarflexion... pretty much the opposite of what I'd carefully specified. I ended up emailing our consultant for help at 10.30 pm on a Sunday night and was lucky to get a reply back within an hour. She'd sent me her secretary's phone number and requested a call first thing on Monday morning to set up an appointment. We came out with a brand new red cast.

 

Jonas was in cast for 4.5 weeks. He learned to crawl again and I got a pretty good arm workout everyday 😅 He also found out after a few weeks that he could walk on it just like he would on his brace and would just start dancing at any occasion.

When the cast came off though, another X-ray was taken, which showed that the fracture was still healing. Our consultant decided not to recast, but told us to be careful and that Jonas wouldn't be weightbearing straight away. I asked whether or not he could go back into bracing and was told "I don't see why not."

It took Jonas about 8 days to pull himself up to a standing position and 2 more days for him to start walking on his own. 

Worryingly, he had lost a lot of muscle mass whilst in the cast, and his gait had been affected, he would collapse his knee inwards to an awkward position when walking. He'd also lost flexibility in his ankle and I was too scared to stretch, in case his bones weren't fully healed and I hurt him. I've learned a lot about clubfoot, but knew absolutely nothing about broken bones which left me very uncertain.

We met our ortho again early November to check on his fracture. She didn't ask for an X-ray this time and a consultant from another hospital attended our appointment. Watching him walk, the visiting consultant said it was to be expected, that after such a serious fracture, 30-40% children have the same issue which usually resolves within a few months. Our consultant first said that obviously his gait would be affected and he would need a few months to get back to walking normally, before starting to blame it on the DTKAFO. Suddenly, I was told that Jonas shouldn't be in an over-the-knee brace after such a fracture, that it applied too much force on the repairing bone and that "that guy in the US" should know better than letting him use it without adjustment. I was in total shock.

I spent the whole appointment listening to both consultants talk over my head. When I tried to talk, I was told: "You probably have loads to say, but... really... We're just observing." I had tried to tape Jonas's knee a few days before the appointment. The answer to that was: "Your approach to healthcare bemuses me!" (which REALLY didn't sound like a compliment...)

All in all, the appointment went from bad to worse and I left totally deflated and angry for the way I'd been talked to. 

All I care about is for my son to receive the best care possible!!! I've made my choice when it comes to his clubfoot and have never looked back. I was hoping that we'd finally reached some kind of compromise at our August check-up. That day, she told me that her main problem with it was that it "keeps his knee bent at all times". What better way to prove her wrong than to get Jonas to stand tall in it? She had looked at me put the brace on him and watched him walk with it on, then thanked me for the demonstration. I thought she was finally interested and had kind of made peace with the fact that we were getting good results with it. I didn't expect her to recommend it, but was at least hoping that she was finally observing it with an open mind. 

Well, in November, as she was talking over my head to the other consultant, she actually said: "The problem is how the brace keeps the knee bent, I mean, the mum says it doesn't, but, you know..." There and then, I felt I'd heard enough.

As a parent, we put so much trust in our doctors and their teams. And, to be honest, it's only fair! They've studied for years to get to where they are, they know their stuff and I wouldn't question our ortho's skills. I know that, when it comes to clubfoot, she is the best in the country, one of the best in Europe, etc. However, she doesn't know my son. She doesn't know our family, and she doesn't know how hard it has been for me to deviate from her recommendation to use the boots and bar.

When it comes to clubfoot treatment, I've come to realise that once correction has been achieved, bracing is up to us, parents. We are in charge of compliance, we are in charge of ensuring that our children will accept them as part of their life. We learn the shape, the texture and the feel of every inch of their feet, we know every little crease in their skin, we know the feel of their leg muscles and we do everything we can to maintain their feet's correction to the best of our ability. 

We'll read hundreds of medical articles or websites, if need be, watch a thousand YouTube videos, if we think they may help. We'll throw a bottle in the FB sea, if anything suddenly feels odd, and we'll turn to professionals to confirm or alleviate our fears.

A 10-minute appointment every 6 months isn't enough to see how clubfoot treatment affects our children's lives, it's not enough to assess our commitment to them, nor our determination to learn everything we can about talipes in hopes that our knowledge will have a positive impact on their lives.

I respect our ortho and am ever so thankful for her work and for giving Jonas such a smooth start in life, I just wish she would respect me for doing my job too. A job I wouldn't swap for the world.

One day at a time

Pearl was born a little over a year ago. When the doctor placed her on my chest, I noticed her feet and knew she had clubfoot. A few minutes later we noticed her wrist was also contracted and she lacked the normal newborn grasp reflex. I remember thinking, “okay, we will figure this out”. The next day I left the hospital with little information about clubfoot other than the realization that we would need to travel out of state to Colorado or Minnesota for care. I made a rule for myself that I would give myself the weekend to just be present with our new baby and I wouldn’t look up clubfoot. I knew I needed time to recover from child birth and to just lavish Pearl with love.  I was worried I would be too overwhelmed or emotional to cope with the information I gathered. My psychological reaction is common. Stewart & Mishel (2000) reviewed multiple studies about parental stress and childhood illnesses. They discovered that parents tend to either seek information and ask questions or disengage and censor information as a way of coping. Anxiety, depression, and guilt are common as parents navigate the ambiguity of their child’s future and the uncertainty about treatment outcomes. I’m firmly in the ask questions and seek information camp but was wise enough to know then that I needed a few days to adjust first.

When I finally started digging into the information on clubfoot, I felt a mixture of uncertainty, fear, and dread. The casting phase seemed straightforward and easy enough. But the bracing stage made me pause. I wondered about how we would manage, would the local day care still take her, what if we put them on wrong, how would we make sure others used them correctly? My emotional response is not unusual. Many mothers experience distress when learning their children have clubfoot and their ability to cope with the news and successfully navigate the treatment process is dependent upon social support (Coppola, Costantini, Tedone, Pasquale, Elia, Barbaro, & d’Addetta, 2012). Parents of children with clubfoot respond to the medical uncertainty and stress of their child’s condition similarly to parents of other medical conditions and disabilities. Judge (1998) discusses how the use of social support was highly associated with family strength. However, if parents relied on wishful thinking, self-blame, distancing and self-control, there was a negative impact on family strength and coping ability.

I joined several groups on Facebook to reach out to other parents and learn more about what to expect with Pearl’s treatment. I was alarmed at the number of children who were not responding well to bracing or had complications because of poor casting. I knew that the numbers were magnified because people not experiencing challenges would be less likely to post, but I learned very quickly that we were at risk of having a similar experience. It was through social media that I learned about the DTKAFO brace and the Clubfoot Research Foundation. In addition to reaching out to other parents, I dug into the medical research and started asking a lot of questions. I discovered that the relapse rates for kids like Pearl was upwards of 53% (Matar, Beirne, Bruce, Garg, 2017). Two weeks into casting, we decided not to use boots and bar and understood we would be challenging the status quo.

My experience on Facebook has been a mixed bag. The warnings other moms heeded about the need for specialized casting was merited but I had a plan for treatment already and was reluctant to hear it. My plan required traveling to the next state over, not flying half way across the United States. I was overwhelmed by the thought of having to change our plan, yet I had this nagging doubt about having made the right decision. When I took Pearl’s second set of casts off and saw the pressure sores, I felt guilt and doubt and knew we needed to change our plan. On the drive home, I came up with a new plan and I was grateful for having other moms to lean on. We flew to St. Louis for the rest of her casts and her tenotomies and it all worked out. While I found the input of other moms useful in the beginning, I started experiencing push back and shaming about not choosing the traditional brace and that led me to leave any group not directly linked to research discussions or alternative bracing. I also decided to start blogging with some other parents about using alternative braces for treating clubfoot. Critical reflection and journaling are effective strategies for empowering mothers as caregivers (Gibson, 1999). Yet some mothers are explicitly silenced by their doctors regarding them posting anything on social media about using anything other than the traditional boots and bar brace.

Research shows that relationships between health care providers and mothers play a pivotal role in mothers developing good coping strategies and competency as a caregiver (Swallow & Jacoby, 2001). In addition, the need to develop relationships with practitioners is a source of stress to mothers. I dread the orthopedic doctor appointments. None have supported our bracing decision, one even gave me false information about the brace as a scare tactic. I’ve provided technical papers and contact information for the brace and brought up research regarding relapse rates and questions about the status quo, desiring a conversation about it. But that hasn’t happened. I get anxious about feeling patronized and dismissed every time one of those doctor appointments looms on the calendar. Beyond my personal annoyance with these encounters, I feel disempowered and that my desire to have a team working together to care for my daughter is being derailed.

In terms of bracing and managing her clubfoot, I guess we have gone rogue so to speak. I’ve opted for foot x-rays via my Chiropractor, had our pediatrician write the script for braces, use physical therapy and massage in addition to bracing.  We jumped in with both feet, so to speak, and were highly focused on this course of treatment.  And then I received a breath of fresh air.

I recently took her to a doctor at the regional neurology and rehabilitation center.  That doctor treated me with mutual respect and took time to answer my questions, hear my concerns and explain the science behind what we were seeing with Pearl. She also reminded me to take a breath and remember to just enjoy my baby. She mentioned that parents can often get trapped in a cycle of constantly trying to fix the ailment or anticipate the next medical problem. When that happens, we forget to just live in the moment and be present with our children. She said to let Pearl climb, play, get messy and be a “normal kid” and that even if she relapses or other challenges arise, she will be okay. I needed that reminder and I have been thinking about how other parents probably need that reminder too. In addition to just hearing another parent say, I understand what you are going through, or you are not alone.

So, here’s where we are at today. Pearl continues to see a physical therapist and is pretty much done with occupational therapy for her hands. She struggled with eating but successfully completed occupational therapy for that in August. We start speech therapy tomorrow. The doctor we most recently saw observed that Pearl has low muscle tone and that could be contributing to her difficulties with eating, speech and gross motor skills. We still haven’t followed through with genetic testing for distal arthrogryposis, but the doctor says we should because growth spurts can cause contractions in the joints that were previously affected as well as new areas of her body.  I will be working on insurance authorization for that this week. This summer, I was diagnosed with hypermobile type Ehlers Danlos Syndrome and it is possible Pearl has that too, but we won’t be able to diagnose her until she is about 10 years old.  

Pearl is happy and healthy. She is also very smart. She loves to play with her sister and likes piggy back rides. She thinks the game of peek a boo is a lot of fun and is crawling everywhere now. She likes to pull herself up to standing and is learning how to move her hands when we sing “Itsy Bitsy Spider”. Drawers and cabinets provide endless entertainment and she likes to share her food with the dogs. She hates baths and water in general but loves to have books read to her. She loves to snuggle and especially loves snuggling with her dad.  In summary, we couldn’t ask for a better baby girl, and we love her with all our hearts.

References:

Coppola, G., Costantini, A., Tedone, R., Pasquale, S., Elia, L., Barbaro, M. F., & d’Addetta, I. (2012). The impact of the baby’s congenital malformation on the mother’s psychological well-being: an empirical contribution on the clubfoot. Journal of Pediatric Orthopaedics, 32(5), 521-526.

Gibson, C. H. (1999). Facilitating critical reflection in mothers of chronically ill children. Journal of Clinical Nursing, 8(3), 305-312.

Matar, H. E., Beirne, P., Bruce, C. E., & Garg, N. K. (2017). Treatment of complex idiopathic clubfoot using the modified Ponseti method: up to 11 years follow-up. Journal of Pediatric Orthopaedics B, 26(2), 137-142.

Stewart, J. L., & Mishel, M. H. (2000). Uncertainty in childhood illness: A synthesis of the parent and child literature. Scholarly inquiry for nursing practice, 14(4), 299-319.

Swallow, V. M., & Jacoby, A. (2001). Mothers’ evolving relationships with doctors and nurses during the chronic childhood illness trajectory. Journal of Advanced Nursing, 36(6), 755-764.

Judge, S. L. (1998). Parental coping strategies and strengths in families of young children with disabilities. Family Relations, 263-268.