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AMNIOTIC BANDING AND LIMB LOSS
© Jennifer Sullivan, 1995
Before I begin, I must tell you that
I'm not a doctor, the last science class I took was biology in my freshman year
of high school, and I'm not familiar with most medical vocabulary. I can only
tell you about my experience with amniotic banding and baby Beans (Sabina Mae),
and define banding as best I can given the information provided me by Beans'
pediatrican, geneticist and orthopedist. Sometimes when the amniotic sac is forming, threads of amnion are also
formed. Most of the time these threads are harmless, floating around the baby
and not harming her in any way. We don't know how often these threads form, but
about once in every 7,000 to 10,000 births, a thread of amnion wraps around a
developing limb. We don't know why this happens, and we don't know what causes
these threads (or bands) to form in the first place. According to current
wisdom, they are not created as a result of something the pregnant woman does or
does not do, and the tendency to form them is not genetic. As the limb grows, the thread tightens, until it is eventually severed. In
some cases, the limb is not severed before birth, but is rendered useless and
must be amputated after birth. And sometimes, the limb is spared and the baby is
born with what looks like a mark around the limb caused by an elastic band. It
all depends on when the band forms, how the baby moves, and how much the band
tightens. In Beans' case, the geneticist feels the amputation probably took place
between 7 and 10 weeks LMP. The hand and forearm were then reabsorbed. It is
assumed that in cases of a clean amputation, the accident occurs early on. According to Beans' orthopedist, more girls are born with amputations from
amniotic banding than boys. The reason for this is unknown. The left side of the
body is affected more often than the right: reason unknown. It's more often an
arm than a leg: reason unknown. And finally, the amputation is almost always
below the elbow. Again, reason unknown! As you can see, there's a lot we don't know about amniotic banding! And a
lot of what we do know is purely theoretical. As I stated above, limb loss as a
result of amniotic banding is very rare. Limb loss is more often one symptom of
a larger problem, often genetic. Limb loss from genetic or teratogenic causes
are most often bilateral. I.e., if you see a child who is missing both arms or
both legs, amniotic banding is most likely NOT the cause. SOME PERSONAL EXPERIENCE
When Beans began to learn to roll over, reach for
objects, and crawl, I kept waiting for her to appear frustrated by not having a
left hand. This never happened. She has learned to do all of these things in a
timely fashion, and appears to have no idea that she's supposed to have a left
hand. The body is an amazing thing and Sabina at 7 months already understands
what arm does what. The orthopedist has assured us that she will have no
"phantom limb" sensation. Her right hand, according to her
pediatrician, is much more agile and coordinated than that of a two-armed baby
in her age group, and he also suspects she will have very nimble toes! I can
also attest to the dexterity of Little Arm. She is able to pick things up using
the elbow joint. The stump is very strong and she can support the weight of her
upper body on it while reaching for things with her right hand. She is very
fussy about her right hand being free at all times. While she is a huggy baby,
she does not like having her hand held even for a second. When she nurses, I
must always hold her in a position where her right hand is free. She has shown
this preference since birth. Those of you who are baseball fans, and more
specifically White Sox fans, are no doubt familiar with Jim Abbott, the
one-handed pitcher. I have read that when he was gowing up, his parents urged
him to play soccer, but he had other plans. Our philosophy is not to assume
Beans will have any limitations at all, and most likely her biggest frustration
will be with people who assume she cannot do things. THE PROSTHESIS DEBATE
Many parents of children with congenital amputations
choose to fit their child with a prosthesis. Beans' orthopedist was very
insistent that we do so for Beans, prefereably at around 6 months of age. We
have chosen not to go this route. If Beans requests one when she is older, we
will of course get her one. In truth, I doubt this will happen. We feel that
this type of early intervention will only teach her that she isn't fine the way
she is. This is clearly a very personal issue. I made a lot of phone calls to
orthopedic clinics after Beans was born, and learned that in the cases of
congenital amputation of an arm or hand, (the leg is a different matter) the
child abandons the prosthesis over 50% of the time, no matter how early she gets
it. Of those who do continue to use it, it is often reserved for very specific
tasks. I'm not trying to say that getting a prosthesis is wrong, or even that
not getting one is the right thing to do. I include this information mostly to
let you know that getting a prosthesis is an option. Limb loss is a main concern
of the Shriners organization, and Shriners hospital will always pay for
prosthetics should your health plan refuse to do so. Our geneticist and
orthopedist assured us that being referred to a WHAT TO DO, WHAT TO SAY
Should you encounter a child who is missing a limb
(whether as a result of banding or not), remember that a missing limb is NOT
necessarily indicative of illness or cognitive delay. Do not offer to help the
child before he/she has asked for it, and do not assume there is anything this
child cannot do. Do not offer your condolences to the parents of such a child.
If you have a friend who gives birth to a baby with a missing limb, and you
don't know what to say, I offer this suggestion: congratulations on the birth of
your baby! I cannot stress this enough. Parents of children with disabilities,
whether they be physical or cognitive, deserve to hear these words just as much
as parents of "normal" children. SOME PERSONAL THOUGHTS
If you see a child who has a disability you are not
familiar with, and you are curious, I feel it's appropriate to ask the parent
about it. DO NOT ask, "Did you take drugs when you were pregnant?" and
unless this person is a VERY close friend, do not ask "Would you have
aborted if you had known about her condition in advance?" SOME EVEN MORE PERSONAL THOUGHTS
When I was growing up, I was taught not to stare at
someone who had a visible disability. Little did I know that pretending not to
see these people is the most hurtful thing one can do. I cannot tell you how
painful it is to sit in a roomful of people who are all pretending they don't
see my beautiful baby girl. I'm not saying you should gawk or encourage your
children to do so. But there is nothing wrong with making eye contact, and
giving a smile. I also feel that if your child wants to approach the parent and
ask about the disability, that's okay. Don't forbid your child to approach that
woman with her baby because you're afraid your child will phrase his question
poorly. I'd rather a person asked a prying question that simply pretend we don't
exist. Again, this is just MHO. Others may feel differently. If you have any questions, please feel free to ask me. Also, if you have
any information I didn't include, I'd be very interested in hearing it. Jen |
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A very special
THANK YOU to Wyatt and Michelle who are the proud parents of Joe
(RBE) for donating the www.child-amputee.net domain and web space.
Copyright © 2004
International Child Amputee Network
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