It takes a village: early interventions and clubfoot

Clubfoot is the most common birth defect, yet it is commonly misunderstood by practitioners and families caring for children with the condition. There is no cure for clubfeet. The deformity is caused by mutations in DNA that result in changes in how connective tissue, muscle fibers, fatty tissue, capillaries and nerve endings are laid down in the feet. Even after stretching casts and tenotomy, the anatomy of the foot predisposes it to changes in form and function. Studies indicate that the forces applied to feet during walking are distributed differently in clubfeet compared to normal feet. These changes in pressure distribution affect gait and how children stand (Pauk, J., Daunoraviciene, K., Ihnatouski, M., Griskevicius, J., & Raso, J., 2010).

The function of the foot impacts the biomechanics of the leg, knee and hip. Dysfunction in the foot can lead to lower limb, knee and upper limb/hip/lower back injury or pain (McClay, I., & Manal, K., 1997, Dananberg, H., & Guiliano, M., 1999). When clubfoot is treated, attention should be given to the entire leg and lower back. One of the reasons we decided to use the DTKAFO brace is because we believed the brace would be more ergonomic and would be an effective tool for treating the leg and foot system affected by the clubfoot deformity.

Any type of device that is used to support parts of our bodies can have a negative side effect of weakened muscles or compensation for lack of use by other parts of the body. Bracing wear time schedules for traditional braces and for the DTKAFO factor this in. It’s a fine balance between optimal brace time for maintaining correction and brace free time for muscle development and gross motor skill development. Pearl is struggling a little with reaching certain gross motor benchmarks. 

We are working with a physical therapist who taught us how to position Pearl when she is sitting to help her learn to transition into a crawling position. We practice this with the braces off and on. We also position her in standing positions, holding onto to sides of chest high boxes or toys both in her braces and out. We stretch and massage her feet and lower legs every day. An occupational therapist visits her every other week to monitor how Pearl uses her hands and wrists. We also used stretching and massage along with a splint to correct the deformity in her hands. Yesterday, we met with another occupational therapist who specializes in how babies and children eat. She taught us some strategies to help Pearl learn to eat properly. Pearl is struggling with how to use her tongue and mouth to push food back and swallow it.

All of these specialists come to our home or the daycare. In the US, the federal government allocates money for each state and territory to provide services to children with disabilities between the ages of 0-3. These early intervention services provide families with access to therapy, adaptive devices, and other services in the home or the daycare. This program is a powerful tool for helping children reach significant growth and development benchmarks. If the providers didn’t visit Pearl at home or at the day care, we would need to travel an hour each way to visit a therapist. This program removes barriers to access to care for many families.

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In addition to the specialists we see through early intervention services, we Skype monthly with Jerald Cunningham, reviewing her progress in the DTKAFO brace. Last month, our physical therapist joined in on the call as well. Jerald is able to troubleshoot issues with the brace during these video calls. We’ve modified the brace twice via Skype call making adjustments specific to Pearl’s feet. Pearl’s teachers at the daycare are also a critical part of this team. They follow the therapy routines when Pearl is with them.

There are many uncertainties ahead of us. Pearl’s feet were under-corrected when we started bracing. The brace is correcting her feet, which a traditional brace cannot do. But the brace may only be able to correct her feet to a certain point and we will need further stretching casts or other interventions. Pearl may need speech therapy, she might also have a tethered spinal cord. Those two things we will revisit closer to her first birthday. In June, I will be evaluated by a geneticist to determine if Ehlers Danlos is also part of Pearl and my medical stories.

All of it can be overwhelming, worrying about her feet and a relapse, wondering if there are other underlying medical issues, stressing out about her being behind with some of her growth and developmental benchmarks, sticking to the stretching and massage routine even when exhausted. Our caseworker reminded us that Pearl has been through a lot already in her life and playing catch-up with reaching certain benchmarks is to be expected. I am grateful for the support we have from the specialists we work with, family, friends and other families who also have children with clubfoot. 

References: 

Dananberg, H. J., & Guiliano, M. (1999). Chronic low-back pain and its response to custom-made foot orthoses. Journal of the American Podiatric Medical Association, 89(3), 109-117.

McClay, I., & Manal, K. (1997). Coupling parameters in runners with normal and excessive pronation. Journal of Applied Biomechanics, 13(1), 109-124.

Pauk, J., Daunoraviciene, K., Ihnatouski, M., Griskevicius, J., & Raso, J. (2010). Analysis of the plantar pressure distribution in children with foot deformities. Acta Bioeng Biomech, 12(1), 29-34.