Fitting Infants

By Kevin Gervais

There has been so much talk about fitting infants lately. And some of it has become personal; I will write from the passion that I feel after spending all of my life with a limb difference.

Those of you who have read my posts know that I am opposed to fitting infants with upper extremity limbs in just about all cases. That position has not changed at any point in my life. I know that there are parents and other amputees that disagree with me, but I can accept healthy and open conversation, and I welcome other points of view. Interestingly enough, we don’t learn much by talking with people who agree with us all the time.

Exchanging opinions and ideas is good and healthy; starting flame wars is not. I expect that if anyone disagrees with me and wants to make personal remarks, that they will do it privately. No one needs to see name calling and judgment while invoking the name of God.

Today I went to the memorial service of my uncle. This uncle was my mother’s brother and lived in Florida for many years while the rest of us live in New England.

When I was 13, (while visiting my grandmother in the hospital just before her death) my uncle told me that I needed an arm transplant so that I could be a “whole person”. As an adolescent, and one with a tenuous body image, this was the absolute wrong thing to say to me. I was furious, and it led to resentment of him and a distance from him that is present even today, while we mourn his death.

Even years later, when I was 26, he was visiting and blurted out “You never did have that transplant, did you”. This time I felt sorry for him. He could not get past that one part of me to see a mature, successful, intelligent human being. He and I were never close because of this. It really was his problem, not mine. And while I still feel that resentment, it is not directed at him. The feelings I have are directed at “professionals” who have bought into the same idea that my uncle did; that a person is not a “whole person” without 10 fingers and 10 toes.

These “professionals” will talk about balance, crawling, future acceptance of prosthetics, and even social acceptance. But what they fail to convince me of is the benefit of fitting a 10 month old baby whose main concerns are keeping dry and getting enough love and warmth from his/her parents.

I have never heard an argument that I could accept. I’m not saying that prosthetic hands are never useful. That is incorrect. They are very useful and help many people with the business of living an independent life.

THE FOLLOWING IS MY OPINION ONLY. IT IS NOT A JUDGMENT AGAINST PARENTS WHO ONLY WANT TO DO WHAT IS BEST FOR THEIR CHILD. I BELIEVE THAT ALL PARENTS HAVE THE RIGHT TO MAKE WHATEVER CHOICES THEY DEEM NECESSARY FOR THEIR CHILD’S WELL-BEING.

Now that the disclaimer is out: My concern is for infants and what seems to me the cruel act of putting something unnatural on a baby in a place that the baby uses to get information about the world. While the baby may not be able to figure out all the subtleties, a baby can tell there is something strange there.

When parents are faced with decisions of this kind, they most often rely on the advice of doctors and other professionals “with experience dealing with the types of babies”. Don’t believe them. Ask the professionals for proof that the recommendation is valid. How many cases have they treated? Do they know any adults that they treated as infants? Talk to other families who have made these decisions. Make a deliberate decision thinking of the future as well as the present.

Your beautiful baby born with fewer than ten fingers does not have a terrible condition that needs to be treated during infancy, he/she has a tiny body to hold and love; a mind to shape, a life to grow into. Please see your baby as a gift from whatever God or power you choose to worship, not as a medical condition. (I’m not saying to ignore other medical conditions that may require treatment; I’m focused only on limb anomalies with no other complications).

Before making a decision to fit or not to fit, speak with a therapist or minister or a good friend who can help you determine if you are making a decision to fit with an upper extremity prosthetic because you want your baby “to be a whole person”. This is a difficult thing to figure out and there is no easy answer.

I have searched my soul many times over the years when told of an infant with an artificial hand. It is implied that I should be amazed at science for being able to provide what nature (or whatever) could not. It is implied that I should congratulate the parents for “doing the right thing”. I cannot. After years of holding in anger and thinking about these feelings, I can come to only one conclusion: it can never be beneficial to the infant to be fitted before the child can understand that it is a tool, not a body part, and before the parents can see it as a tool as well.

As a toddler, maybe; as a child, sure. But if any parent is being “advised” to fit an infant, please take a few moments, or days, or years if necessary, to figure out why that recommendation is being made. If, at the end of the analysis, you are confident that you want to fit your infant for medical reasons, and that this is the best decision for you and your child, then so be it. I wish you nothing but happiness, since that is probably one of the most important decisions you will have to make, and once it is done, you can get on with the business of enjoying the miracle you have been a part of.

If you can make this decision after careful consideration and after talking over all the issues from both sides, then you have every right to defend that decision. Also, please remember to respect the decision that other parents make and never call into question a parents love and commitment to their child because you came to a different conclusion.

The point of this loooong message is simple. I’ve been there. I can tell you things doctors can’t. I can tell you things even other parents can’t. I am rebellious and have a different perspective (and also a distrust of doctors and prosthetists). I can’t tell you what decision to make. I can’t tell you what is best for you and your child, but I can tell you what your child may experience in life. I can tell you what I’ve been able to learn on my journey and hope that my experience can help you make a more informed decision, one that you will feel comfortable with and won’t find yourself second-guessing.

I can also tell you that, whatever you decision, make sure that your family sees your child as a “whole person”, don’t use the prosthetic limb to give the illusion of wholeness.

One more note.

To all the parents on this list, I feel joy in sharing the experiences and discoveries that I read here. I can only wait patiently until the day I have my own child about whom I can share stories; a child to hold and love and worry about. These posts are very important to me. While I am not a parent yet, I am gaining a sense of what parenting is like. You all have been given a gift and obviously treasure that gift to come together, trying to protect and help your children the best way possible.

Please try to remember the love that each parent has for his/her child. And try to forgive the passion that we sometimes display in the business of loving and protecting our children. If we can remember the reason we are all here, and respect each other, we can all gain so much from each other. When we forget the respect we all deserve (and that we will try to teach our children) we all suffer.

Thanks for sticking with me this long.