Expectations - Volume 1, Issue 1, 2005
Questions to Ask Your Child's Doctor
by Mary Williams Clark, MD
Your child might be facing amputation surgery for one of a variety of reasons. The reason – whether it is trauma, disease or a condition the child was born with – will likely have a dramatic impact on how much time you will have to gather information and make decisions about the amputation.
Your child might have been born with a significant difference in an arm or a leg, and amputation might be proposed as a way to help her or him gain more function. If a child is born, for example, with an undeveloped tibia (the larger bone between the knee and the ankle), leaving her with no real knee or ankle joint and an unstable foot that won’t reach the floor, an amputation of part of her leg might better allow her to wear a prosthesis and walk and run.
If a 4-year-old who was born with all of his limbs intact runs out into the yard one day while his father is mowing the lawn and slips under the lawn mover and damages his foot, he may be rushed to the Emergency Room (E.R.). He will need an urgent surgical inspection, and he may need an amputation.
In the first situation, you have more time to discuss and plan the best way to help your child. There may, in fact, be weeks or months to ask questions. The second situation is, of course, more urgent, but you should still have some opportunity to talk with the doctors and meet the surgeon.
Following are some questions you might want to ask:
In a nonemergency situation, the coordinator of such a clinic, or a nurse or secretary for your doctor, can usually call families who have indicated that they will talk with families of new amputees. With your permission, someone in that family will call you. Because of conﬁdentiality rules, you will only give and be given ﬁrst names and a phone number. After you have spoken by phone, however, you can agree to exchange more information and/or meet each other. (For more information on peer support for children and parents, see pages 9 and 22).
Additional questions you will want to ask your doctor include the following:
Fear of the unknown is common. If you and your child have the answers to most of these questions, however, it may help you feel better about the surgery. Don’t be embarrassed to ask about anything that concerns you or your child. Most doctors will be happy to answer any of your ques-tions to help put you at ease.
Mary Williams Clark, MD, is a pediatric orthopedic surgeon and a member of the Amputee Coalition’s Executive Publications Committee.
Editor’s Note: Surgery, rehabilitation and prosthetic care are all important to your child’s well-being. The child’s or teen’s healthcare team should, therefore, consist of several professionals, including surgeon, nurse, physical therapist, occupational therapist, social worker and prosthetist. You and all of these team members should communicate with each other to ensure that appropriate care is provided.
Need support or information to help
parent a child with limb differences?
If you are a new parent whose baby was born with a congenital limb difference or the parent of a child who has had an amputation, Amputee Coalition’s Parent Support Network can provide you with one-on-one support from parents who share your experiences. Parents of children with limb differences from all across the United States have volunteered to offer peer support to other parents who may need someone to talk to.
This network is simple to use and will provide you with another parent to talk to when you need practical information and when you need to discuss issues with someone who has faced similar challenges with their child.
If you would like to use the Parent Support Network to connect to another parent, just call the Amputee Coalition, and we will put you in touch with a family that most matches yours in terms of your child’s age, cause and type of limb loss, and geographic region. If you are a parent who would like to provide peer support to parents of new amputee children, please call us, and we will explain the system that is used to connect parents and caregivers.
For more information or to request a support meeting with another parent, call toll-free 888/AMP-KNOW (267-5669), ext. 8130.
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