How Should I Feel?

Jonathan Nizzo as a toddler

Actually, that is the wrong question, and can only lead to a great deal of needless anguish on your part. You are going to feel however you feel, and chances are, those feelings are going to swing all over the spectrum. The feelings we hope to minimize right here are your feelings of hopelessness. These kids can live wonderful lives, full to the brim. Guilt, fear, anger, sadness, disappointment, frustration, pity, all find themselves in the mix, and that is only natural. “Why me” gets in there too from time to time. A couple of anecdotes we have heard parents express might be appropriate here.

One mom wrote that it was like saving up for a whole year to go on the vacation of a lifetime in Italy. After scrimping, and saving, and doing without, and after getting all the brochures and tours selected, and after telling all the friends and family about the trip, the big day of departure finally comes. The built up anticipation is nearly bursting right out.
Then, boarding the aircraft, and enduring another 9 hours of confinement before the final realization of the life-long dream, the aircraft at long last comes to a stop at the gate.

Upon exiting the gate, a cute young attendant says brightly with a big smile, "Welcome to Holland!" "Huh?" "But I was going to Italy!" "I don't want to be in Holland!" "We've been planning on vacationing in Italy for our whole lives for goodness sake!" And then it is as if the young attendant says: "Well, it will take us a couple of days to straighten things out, but you can rent a car and drive to Italy if you want to."

Seventeen years later, this mom told us that "Holland" has became her very favorite vacationing spot, and it has a perfect quiet charm all its own. When she begins to play her "memory tapes" the time in Holland always overshadows her stay in Italy, "though the drive was beautiful," she says.

A dad told us another story...

All my life I looked forward to playing catch with my boy in the back yard, getting him up to speed, and launching him into Little League and beyond. When the nurse handed me our baby and I saw his missing arm, tears literally jumped out of my eyes. All those dreams came crashing down around me, and I will never live down acting so silly. These years later, I look back and think God whispered in my ear....{”OK! I’ve made you a trade. I kept his arm, but in exchange, I will hand him an extra 60 IQ points, and a compassionate warm personality that will make him loved by everyone he meets...and we will have a learning exercise.”}

My boy made all-star in the teen league he played in this summer, and that is really neat. The best part though, is the courageous, loving young man to whom I have had the joy of being a dad. Mom and dad, please take a deep breath and look forward to the future.

Jonathan as a teen

Every child runs into "problems." Yours with a limb difference is among them. The "problems," are the things that create the watersheds in your lives and the lives of your children. From those watershed events, can come the deepest joys. We have been there in so may instances, and observed the special closeness between siblings and parents and kids with a limb difference. Linda and Dan have been there during all of those growing and maturing years with so many families and you will be delighted to meet and visit with them in out private chat-room and in person. There are so many moms and dads out there who have walked the road you are embarking upon, and every one of them would be honored to walk with you.

What Should I Do Prior To My Child's Amputation?

With amputations due to trauma, quite often you will not have a chance to read this prior to the operation. If you do, however, please ask your doctor to contact us, day or night on our 800 number.

If the amputation is going to be done due to illness, chances are you will have a chance to find this site. In either case, please understand your Doctor's mind-set. "Let's save as much as we can!"

We have seen many cases where this mind-set prevailed, thus preventing the best fitting of the subsequent prosthesis. Generally speaking, an amputation should be made at mid-limb,(mid calf, mid thigh, mid fore-arm, mid upper arm), to allow room for prosthetic componentry above a given joint. In addition, a mid-limb amputation allows for a cushion to be fashioned of remaining muscle tissue, making a comfortable prosthetic fitting more achievable.

Please...know that there are many children who have gone through this terribly difficult time. In virtually every case, having fellow kids to write back and forth, eases the emotional and psychological impact of the loss. (And be sure that their "black humor" is actually a very healing exercise.) Please contact us for e-mail addresses of some great kids who would love to help.

Also, a recent case reminded us that even in these "enlightened days", many doctors do not know how important a "shrinker" will be. The day the sutures are removed, the donning of a slightly elastic "sock" over the remnant limb is the single fastest way to reduce the phenomenon called "phantom pain". In addition, the shrinker prevents the build up of fluid in the remnant limb, and the subsequent swelling and tenderness is kept to a minimum. Please call us for help in this crucial time-frame. Give one of our splendid prosthetists the time to come where you are. (And please understand that there is never a charge for this simple gesture of good will.)

Finally, in discussing the "phantom pain", virtually every amputee we have known tells us that wearing and moving with a properly fitted prosthesis is the best relief they have found.

When you are awakened during the night with your kiddo moving around with their prosthesis on, just give them a hug and go walking or something with them.

What About The "Nubbins"?

A characteristic of amniotic banding is the presence of tiny "nubbins". If you have yet to remove them, please do not let an over anxious doctor surgically remove one or more of the tiny limbs, or let a general practice prosthetist talk you into removing them "for efficient prosthetic fitting" purposes. These nubbins provide a sense of touch that might prove extremely important during your child's future.

Even if they have been removed by the time we meet, Linda and Dan can effectively produce a proper-fitting prosthesis. So, please don't worry. It will be okay. We just want to optimize the potential for the future, as new techniques become available.

Should I Just Accept The Situation?

Believe it or not, there are well-meaning people who think you should. Obviously, we don't think that your child should be limited in any way, physically or emotionally, by the loss of a limb or limbs. We want to provide the best that human hands can do to alleviate the loss. We hope that you have read some of our other pages on this site to round out your thinking. If not, we hope you will do so.

When Should I Begin?

Today would be good! Call or write us and we can begin a dialogue and at least a directed thought at a course of treatment. In the event of an amputation due to injury or illness, it is well-known that the "sooner the better" is the ticket. Arm or leg atrophy begins very quickly following an amputation, and then, "phantom pain" becomes much less when wearing and using a properly fitted prosthesis.

For congenital limb differences, arm and legs can be fitted as early as four months and for all practical purposes, the prosthesis is accepted readily by the children, as if it was their own limb. Their developmental "ramp" is not interrupted at all and they become proficient in an astonishingly short time, in most cases.