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Things To Remember
For Families of Children with Congenital or Early-Acquired Amputations
by Mary Williams Clark, M.D.
The birth of a baby with a limb
deficiency is almost always unexpected and shocking. The same is true of an
accident or otherwise acquired amputation, especially in a child. The feelings
you felt as a parent probably included fear, dismay, worry and sadness, and for
most people also anger, confusion, grief and guilt.
About one in every 2000 new born babies will have some form of a limb
deficiency; it may be absent parts of fingers or toes, complete absence of all
four limbs or something in between. Another larger group of children lose limbs
in accidents, especially to lawn mowers, trains, all terrain vehicles, and
motorcycles; or to disease, including cancer. The feelings are the same
regardless of the cause or severity of the loss (though those coping with loss
to cancer must also cope with threat of possible death).
Those of you whose children were born without problems and later lost a
limb already knew those children as the very unique and individual persons they
are. Those of you whose children were born with a "difference" from
the majority very quickly discover the very real person there, and the
difference has little or nothing to do with who that person is.
I've written the above from my experiences of working and talking with
amputees and their parents over more than twenty years and in four different
clinics. I'm now going to tell you things I'd like you to think about and
remember:
YOUR CHILD IS A
NORMAL
CHILD WHO HAPPENS TO HAVE SOME DIFFERENCES.
If the difference is congenital, THERE WAS NOTHING WHICH WAS UNDER YOUR
CONTROL THAT YOU DID OR DIDN'T DO THAT CAUSED IT. There are different causes for
limb deficiencies, and we don't know all of them. Some are genetic, but again,
that's something that's not your fault. If you know in advance that there is a
chance that your child will inherit a family syndrome, that's your choice to
make and not anyone else's; don't feel guilty for making that choice either way.
If you took medication or were exposed to radiation or other "teratogenic"
substances, remember that the limbs develop in the first 4-7 weeks, usually
before you know you are pregnant. (there has only been one proven medication
that caused limb differences, and that is Thalidomide, which, of course, is no
longer on the market.)
If the amputation was accidental you may feel there WAS something you did
or didn't do that caused or contributed to it but YOU DID THE BEST YOU COULD
UNDER THE CIRCUMSTANCES.
ITS OK TO GRIEVE. In fact it's normal, and it may be a grieving process
that lasts a very long time. It may never really end -- you'll always grieve for
the child who was (even the one in your expectations), but it will, truly,
lessen with time, as you see the many capabilities your child has. (And don't
forget that not everyone in the family is at the same stage of grief at the same
time.)
BE PREPARED, AND PREPARE YOUR CHILD, FOR REACTIONS. People will stare and
will often say inappropriate and sometimes downright stupid things. (Examples I
have heard about: "Her clothes are on wrong," and "What does a
child like him (with a below-knee amputation as an infant) need shoes for?"
... from a shoe store clerk!) Children are often just curious, and usually
deserve a short unruffled explanation ("she was born without legs," or
"His arm was injured and had to be amputated," or "Her hands are
different because she was very ill and it affected her circulation.").
Children who are the subject of the stares are very often straight forward, with
an accurate or sometimes more exciting version ("My leg got cut off by a
lawn mower," or "A shark bit my arm off.").
KEEP YOUR EXPECTATIONS OF THEM AS HIGH AS YOU WOULD OTHERWISE. Give them
chores to do. Work hard if you have to with their teachers so that they're not
given high grades "Because he tries so hard," or regarded as "the
poor thing - it's hard for her." People who do that do them no real favor.
LET THE CHILDREN KNOW YOU LOVE THEM JUST THE WAY THEY ARE.
There's a reason Mr. Rogers said it, and almost every child who heard it
at age 3 or 4 still remembers. The most important factor influencing the
eventual outcome for your child as she or he grows up is not the kind of
prosthesis, not the kind of surgery, if any, not even how early he or she was
seen by an experienced team, or even the extent of your child's physical
differences - It's your attitude toward the situation.
If you can see all your child's abilities, see her as capable, emphasize
all the things he can do - if you can look at them with or without a prosthesis,
in or out of the bathtub - if you can consider then normal children who happen
to have their differences, that is the picture of themselves they will grow up
with. Love them, challenge them, applaud them and they will develop the
self-esteem and self-confidence they need.
 Mary
Williams Clark, M.D.
This article was originaly published in IN MOTION the official
magazine of the Amputee Coalition of
America
. Used with permission.
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