Advocating for your child

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 the 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 whom 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.

IT'S 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 and the many capabilities your child had. (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 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 them 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.


This article was originally published in IN MOTION the official magazine of the Amputee Coalition of America. Used with permission.

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