Helping Parents and Children Deal With a Child's Limb Deformity

William G. Wilkoff, MD

February 25, 2021

After 15 years of limping and a gradual downhill slide in mobility, recreational walking had become uncomfortable enough that I've decided to shed my proudly worn cloak of denial and seek help. Even I could see that the x-ray made a total knee replacement the only option for some return to near normalcy. Scheduling a total knee replacement became a no-brainer.

Dr William Wilkoff

My decision to accept the risks to reap the benefits of surgery is small potatoes compared with the decisions that the parents of a child born with a deformed lower extremity must face. In the Family Partnerships section of the February 2021 issue of Pediatrics you will find a heart-wrenching story of a family who embarked on what turned out to be painful and frustrating journey to lengthen their daughter's congenitally deficient leg.

In their own words, the mother and daughter describe how neither of them were prepared for the pain and life-altering complications the daughter has endured. Influenced by the optimism exuded by surgeons, the family gave little thought to the magnitude of the decision they were being asked to make. One has to wonder in retrospect if a well-timed amputation and prosthesis might have been a better decision. However, the thought of removing an extremity, even one that isn't fully functional, is not one that most of us like to consider.

Over the last several decades I have read stories about people — usually athletes — born with short or deformed lower extremities who have faced the decision of amputation. I recall one college-age young man who despite his deformity and with the help of a prosthesis was a competitive multisport athlete. However, it became clear that his deformed foot was preventing him from accessing the most advanced prosthetic technology.

Although he was highly motivated, he described his struggle with the decision to part with a portion of his body that despite its appearance and dysfunction had been with him since birth. On the other hand, I have read stories of young people who had become so frustrated by their deformity that they were more than eager to undergo amputation despite the concerns of their parents.

Early in my career I encountered a 3-year-old with phocomelia whose family was visiting from out of town and had come to our clinic because his older sibling was sick. The youngster, as I recall, had only one complete extremity, an arm. Like most 3-year-olds, he was driven to explore at breakneck speed. I will never forget watching him streak back and forth the length of our linoleum covered hallway like a crab skittering along the beach. His mother described how she and his well-meaning physicians were struggling unsuccessfully to get him to accept prostheses. Later I learned that his resistance is shared by many of the survivors of the thalidomide disaster who felt that the most frustrating period in their lives came when, again well-meaning, caregivers had tried to make them look and function more normally by fitting them with prostheses.

These anecdotal observations make clear a philosophy that we should have already internalized. In most clinic decisions the patient, pretty much regardless of age, should be a full participant in the process. And, to do this the patient and his or her family must be as informed as possible. Managing the aftermath of a traumatic amputation presents it own special set of challenges, but when it comes to elective amputation or prosthetic application for a congenital deficiency it is dangerous for us to insert our personal bias into the decision making.

Wilkoff practiced primary care pediatrics in Brunswick, Maine for nearly 40 years. He has authored several books on behavioral pediatrics, including "How to Say No to Your Toddler." Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Wilkoff reports having nothing to disclose. Email him at

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