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.