A family seeks advice and treatment in the clinic for their newborn
infant who is missing an arm. Often a somber mood will pervade the room while
the parents are questioning “what went wrong; was there blame to be laid;
what will the future hold for all of them” and numerous other
uncertainties that enter this open field of the unknown. The first basic
response by the clinical team member that is evaluating the situation is to
allay the fears and answer questions with known facts.
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| © 2010 iStockphoto.com/John Cowie |
When an appendage has had limited growth due to the amniotic band
syndrome, the explanation is straightforward because of the restriction
resulting in the deformity. Congenital absence due to an interruption of the
embryonic development for no apparent reason remains a mystery and therefore
clinicians often have a less satisfying answer to offer. Besides looking for
answers as to “why,” the parents are also anxious to move forward
with what is best for their child. Entering the world of prosthetics can be
overwhelming for them and requires an approach with confident knowledge and
experience by the practitioner.
Controversy
Prosthetic treatment for children with congenital absences of the upper
extremities remains a controversial subject. There is disagreement as to what
age to begin wearing a prosthesis dependent on the region of the country, the
prescribing physician, the experience of the prosthetist, the experience of the
occupational therapist, the insurance plan and numerous other variables.
Whether to begin with a myoelectric cookie crusher, a passive crawling hand, or
wait for awhile are decisions that can result in many directions. The intention
of this article is to reflect the policies and procedures practiced within our
clinic setting that have resulted with apparent success and not to pass
judgment on processes found elsewhere.
Open discussion
Jumping back to the initial visit with the family, an explanation of the
pros and cons of a prosthesis begins and can be projected from infant through
ld, a
prosthesis will reduce the overuse of the sound side, which otherwise can lead
to painful debilitation.
The cons of a prosthesis include the reduction or elimination of the
sense of touch and increased heat due to encompassing the residual limb. It
also adds weight that is compounded by the leverage secondary to the length of
the residuum. If the prosthesis is myoelectric, the weight is greater and more
of a factor. For the body-powered prosthesis, a harness that activates the
terminal device can be uncomfortable and the cabling system is not cosmetically
appealing. Both types require maintenance and occupational therapy training.
Hope is on the horizon for improvements in componentry and fabrication
materials with the current emphasis on research and development in our
industry.
Timeline
After the consultation, a timeline of prosthetic intervention should be
established. Our clinic formerly advocated the fitting of the first passive
prosthesis at approximately 6 months of age to promote sitting balance and
assist in crawling. This policy met with limited success and promoted
frustration for the parents who were trying to comply with the program. The
prosthesis generally was difficult to don on an uncooperative infant, but the
child could quickly remove it and toss it aside so normal activities could
proceed. Combat crawling was more proficient even with the prosthesis. Finally,
the child’s arm grew faster than the appointments could adequately keep up
with the growth.
A different approach
The infants did win as the policy changed to accommodate a more
practical approach of waiting until approximately 2 years of age or when a
child could follow directions. The initial body-powered device commonly used
has a volunteer closing terminal device with a figure nine harness. An
admission for delivery and prosthetic training with the occupational therapist
for 1 to 2 weeks is standard. The expectation is to offer the opportunity to
learn how to successfully use the prosthesis in hopes that the child not only
accepts it, but appreciates the advantages of function it can provide. Parental
guidance and compliance of usage and maintenance is paramount for overall
success. Keeping up with growth requires vigilance on the parents’ part so
lapses of usage are prevented. An option for the older child is to convert the
figure nine harness to the anchor system developed by Debra Latour, OT of the
Shriners Hospital Springfield. This attaches the cable to a system adhered to
the patient’s back that allows more freedom of motion and eliminates the
axilla pressure from the harness on the sound side.
In spite of the best efforts of the prosthetists and parents, many
children will not wear their below-elbow prostheses. Lisa Wagner, OTR/L and
colleagues conducted research regarding the reasons for prosthetic rejection in
children with unilateral congenital transverse forearm total deficiency. They
reviewed 489 patients ages 2 to 20 years and found 168 (34%) of them did not
wear a prosthesis. Of those, 137 had rejected their prosthesis and 31 had never
worn one. The leading reasons for rejection were lack of function and the
prosthesis was not comfortable. Therein lays the challenge for our profession.
Demand on the rise
When treating a child with a congenital absence above the elbow, many of
the same consultation points need to be discussed. Daily activities present a
big challenge, but a child is amazingly adaptable on his or her own. The
difficulty of operating a prosthetic elbow dictates the use of a friction type
joint at first, or perhaps just a fixed angle where the focus can be on
operating the terminal device. Success by prosthetic training through an
admission is essential and encourages usage at home.
A parent of a child with a congenital below elbow absence approached me
with an idea. He observed how proficient his child was without a prosthesis by
simply using the crook of his arm to hold and manipulate objects. He suggested
that an above elbow amputee could benefit from a simple device as an additional
option to the “real” prosthesis. With this in mind, I created a
plastic “helper arm” for a four-year-old girl that suspended using a
liner with a Velcro strap. It was positioned in slight flexion and was the same
approximate length of the sound side. It had a flexible silicone hook anterior
distally for carrying objects, a slot for holding paper, and a channeled pelite
distal end for compression and stabilizing a bicycle handlebar. She was
proficient in using both of her prostheses and wore them for different
situations, or chose to go without. There are potential applications for this
idea that will be explored in the future.
Upper extremity prosthetics is a growing demand for our profession and
we are witnessing revolutionary changes in the climate of war. Simplicity and
function have always led the way for successful designs, but cosmetics make it
socially acceptable. Perhaps the ingenuity of combining these attributes will
give our amputee population an acceptable product for both the adults and
pediatrics.
For more information:
- Wagner LV, Bagley AM, James MA. Reasons for Prosthetic Rejection by
Children with Unilateral Congenital Transverse Forearm Total Deficiency.
Journal of Prosthetics and Orthotics. 2007;19(2): 51-54.
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