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Severe Bilateral Clubfoot
Q: My son was born with severe bilateral clubfoot. He was casted 12 hours after birth and went through a series of casting until he was six months. He had surgery on both legs at six months and then returned to casts until he was 14 months old. He had physical therapy from 16 months until 26 months. From 14 months until three years of age he wore the plastic Mafo braces. At three years of age he had another operation and returned to cast for six more weeks, then back to physical therapy and Mafo braces. For the last three weeks he has also been wearing the night shoes with the bar in between. He is under the care of an orthopedic surgeon.
Are there other strategies and techniques we could use to help keep his feet and legs straight? He has been to Shriners twice but my husband and I do not feel they are on the cutting edge of things. Any information is appreciated.
A: Although I am an expert on children with "special needs," I am not a physician and am not qualified to answer the medical aspects of your question. I will give you some suggestions regarding how to assure yourself that your son, who is about three and a half years old, is receiving appropriate care.
When parents have questions of this kind, it is always worthwhile to have a second opinion from a health care expert in the same area of specialty. Your son has been operated on and is being cared for by an orthopedic surgeon, has had casting and worn braces, has worn prescribed night shoes, and is receiving physical therapy from a physical therapist.
Below is an ideal process to get your concerns addressed. I hope you will be able to do this. Unfortunately, your health insurance may not be willing to pay the costs involved; you may have to pay.
Talk with your child's primary care physician, his pediatrician, or family practice physician about your concerns. Ask the pediatrician to convene a meeting (perhaps using a conference telephone call arrangement) that includes you and your husband, your son's pediatrician, the orthopedic surgeon, and the physical therapist.
At this meeting, explain your disappointments or frustrations with the results of your son's treatments. Remind them that going through two surgical procedures in his young life has not been easy for him or for his parents and that now, you want to be sure that your expectations and his are appropriate. Then, you have several specific questions to ask. You may want to tape record the meeting because most of us are likely to forget details, which may be important. Are the results thus far as good as they could be? If they are, what can you expect in the coming months and years? Are the special shoes properly designed, do they need to be adjusted for your child's growth? Is the amount of physical therapy (number of times/week) sufficient? What can parents do to help the treatment process?
From the child development perspective, I would also want to know if your son is making progress with getting around the neighborhood and making friends? Is he able to participate in preschool programs?
In this context, you have the right to request a second opinion from another team of similar health care experts -- an orthopedic surgeon and a pediatric physical therapist. You may also want to suggest that a pediatric physiatrist also be involved. Physiatrists sometimes have a different perspective from their colleagues in orthopedic surgery.
Finally, my experience with Shriners' hospitals and their staff members has been excellent. I believe they would be open to a second opinion and to working with you to determine if anything further needs to be addressed.
As a clinical psychologist and not a physician, I want to suggest the importance of attending to your young child's psychosocial needs. When a child has a physical disability like your son, it is understandable for parents to focus on the child's physical disability -- sometimes, a child's other needs also require attention.
I wish you the best.
Stanley D. Klein, Ph.D.
Licensed Clinical Psychologist
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Stanley D. Klein, Ph.D., is the former Editor in Chief of Exceptional Parent magazine. A clinical psychologist and editor, Klein cofounded the magazine in 1971. Klein serves as a Research Associate in Medicine (Pediatrics) at Children's Hospital (Boston), where he teaches health care professionals about working with the parents of children with disabilities, with particular focus on the challenge of delivering difficult diagnostic news.