Child Life Specialist

Karen McCarthy, CCLS
Child Life Specialist
Children's Healthcare of Atlanta
Aflac Cancer Center & Blood Disorder Service

Your child and family have been hit with some powerful news that comes with difficult choices. Speaking to your child about all that is happening can be hard and complicated. The basics when delivering difficult news are two-fold:

Communication –
It is important when discussing information with your child that you communicate: simple, open, honest, developmentally appropriate information.

Define terminology-
Most children need a greater understanding of words and phrasing used by yourself and the medical team. To accomplish this, define words using simple, concrete language. An example of this is explaining to your child that a prosthetic is a replacement for a body part, usually an arm or a leg, that is not real.

Developmental considerations are also vital to relaying information. Each developmental level has special considerations that are specific to that group. When you are discussing a topic as important as rotationplasty it is wise to consider your child’s developmental level. Below are some tips on ways to converse with your child or teen about his or her current situation.


Developmental Concerns

  • Fear of pain
  • Body image
  • Fear of the unknown
  • Peer group is gaining importance
  • Missed school, sports, activities
  • Fear of incompetence
  • Learn through exploration and demonstration

Tips for Parents
  • Give choices when appropriate
  • Allow child to ask questions
  • Decide on house rules for safety
  • Agree on frequency of wearing prosthestic
  • Provide accurate information about changes to their body
  • Use pictures, drawings, and models to help teach
  • Point out specific body parts that will be affected


Developmental Concerns

Views self as unique, vulnerable, and immortal (no one understands how I feel)
Concerns about future implications of illness or disability
Increased peer interest. Wants to be accepted by peers
Worried about appearance
Gaining independence
Concerned about here and now, not future

Tips for Parents
Be tolerant of their idealistic views
Promote independence and provide control through choices whenever possible
Have the teen tell you what they understand about the procedure
Provide opportunities for questions
Be honest
Provide information that includes the senses as well as how it will impact their bod


So you’ve decided to have a rotationplasty, now what?

Preparing for surgery
Losing an extremity often involves grieving a loss. Not only is your child physically losing a limb, but he or she may also be losing how they identify themselves. Allow your child or teen to feel sad, angry and shocked. All of these responses are normal given their current situation.
Your child may have a lot of questions before his or her rotationplasty. It is important to prepare them for their surgery as best as you can. If your hospital employs a child life specialist you can consult him or her to help prepare your child. If you feel comfortable discussing your child’s surgery with him or her do so; allowing your child to ask questions, and in turn answering their questions. This open, honest communication will help your child cope with his or her surgery. In preparing your child remember to: consider their developmental level, consider their readiness to learn, and walk through the sequence of events (“sleepy medicine” so they won’t remember or feel anything, operating room where the surgery will take place, hospital admission, rehabilitation, etc).

Some children and teenagers will think their rotationplasty has forever categorized them as limited in what they can do. Be proactive in your positive outlook. Discuss meeting other children who have limb differences. Identify people in pictures, on television, and in movies with limb differences participating in sports and daily life skills. Another outlet would be to research camps for children with limb differences. All of these things would promote a sense of normalcy and the ability to accomplish tasks regardless of limb difference.

Legacy Products Inc.
Legacy Products Inc. is a company that specializes in making dolls to help educate children about their disease or impairment. For more information go to

Center for Limb Differences
Center for Limb Differences is an organization based out of the Mary Free Bed Hospital & Rehabilitation Center. The Center for Limb Differences provides books on limb differences. Books are categorized by age range and discuss age appropriate concerns. For more information go to

Kaario, B. (2003). Childhood Cancer and Limb Loss. British Columbia: Fromme Mountain.