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.
