Children with spasticity or weakness that affects the legs often have differences in the ways that one or both hip joints are joined together, function and develop over time. These differences may make walking difficult for the child, lead to inflammation (arthritis), or both. Families may have discussions with their providers, together with their children, as developmentally appropriate, as to whether any of a range of interventions (operations and other procedures) should be performed.
There are several types of interventions to address what is known as “hip dysplasia.” A detailed description of each of these interventions is beyond the scope of this column, but some common options include:
- soft tissue “release” of the connective tissues (muscles and tendons) around the hip (the joint) and femur (thigh bone) that are tight; this operation aims to re-balance forces that tug the head of the femur away from the acetabulum (pull apart the “ball and socket”)
- injection of botulinum toxin into some of those same tissues to loosen them up for a few months at a time
- cutting and repositioning the upper part of the femur (derotational osteotomy) and/or acetabulum
- placement of an intrathecal baclofen pump; this operation involves inserting a catheter into the spinal canal (the liquid-filled space around the spinal cord) to deliver a medication, baclofen, directly to nerves that travel to the muscles, helping those muscles to relax
- selective dorsal rhizotomy, an operation that involves manipulating some elements of the spinal cord toward the same goal, helping the muscles of the legs to relax.
How do surgeons, pediatric physical and rehabilitative medicine specialists, families and children balance the hoped-for benefits of any of these interventions against the risk of harm? It all depends on the goals of care. Some important questions to ask yourself and discuss with your child’s doctors are:
- What problems, if any, is the hip dysplasia causing my child now?
- Can my child walk, or is she likely to in the future?
- If my does walk or is likely to in the future, is there pain with weight bearing or a difference in leg lengths making walking more difficult?
- Even if my child cannot walk or is unlikely to in the future, does she experience pain when the hip(s) is/are moved around for bathing or diapering or when we perform stretching exercises?
- If one or more of these interventions may help my child, how likely is it that they will?
- What will the rehabilitation be like after the operation?
- If my child’s quality of life is improved by one of these operations, how long can I expect the improvement to last?
- If there are two or more interventions that we can choose from now, what are the relative benefits, risks and harms of each one?
- What are our options in terms of timing for the proposed interventions (does it matter if we undertake them now, or in a year or more?)
- Will the intervention(s) being proposed be covered by my child’s health insurance?
- How does the future look for my child if we don’t perform any procedures, but instead continue with physical therapy alone?
As with most shared decision making for our children, discussions within the family and with the child’s providers take place over time. Older children and adolescents should be informed as fully as possible and take part in the decision-making to the extent they are able. Many families will want to consider the decisions for a while, and some will wish to seek second opinions.