Your child’s primary physician can monitor for emerging orthopedic issues. Physical and occupational therapists can access orthopedic issues, manage therapy needs, and recommend optimal positioning equipment. A physical medicine and rehabilitation specialist or orthopedist can monitor for musculoskeletal issues. Complex care and palliative care clinicians can assess baseline medical status and provide support for considering surgical treatment options.
Hip Subluxation and Dislocation
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The hip joint supports body weight and allows the upper leg to move. Many children with SNI develop hip subluxation, which means that the ball of the hip joint is partially out of the hip socket. Subluxation can cause pain, spasms, and difficulty weight-bearing on the side of the affected hip and can even cause a previously ambulatory child to become non-ambulatory. In non-ambulatory children it can affect sitting balance and make day-to-day activities more challenging. Children with SNI often have gait abnormalities stemming from other issues, so subluxation cannot necessarily be detected purely from observation. It is a goal to avoid complete joint dislocation, which otherwise may develop as a gradual progression of subluxation.
Monitoring for subluxation, called hip surveillance, may begin after a primary care physician or physical therapist has noted a change in the range of motion of the hips, a difference in the length of the legs, or if one leg begins to turn inward or outward. Caregivers, too, may note limited ability to move the hip during care, or pain as the hip is moved. A physical medicine and rehabilitation specialist or orthopedist will determine how changes should be tracked.
Spasticity contributes to subluxation, so management of hip issues will include your child’s treatment for spasticity. Surgery may be considered if your child’s comfort during sitting cannot be improved with positioning or specialized chairs; if they are losing ability to stand for the benefit of bone health; if pain is not otherwise well managed; and/or to enhance personal care and hygiene.
Any decision about surgery is best made with the entire medical team. Your child’s primary physician and/or complex care specialist can review your child’s overall health, which is important as the risks of surgery and possible recovery time are assessed. Ask your team what is the best possible outcome, the worst possible outcome, and the most likely outcome for your child? Other specialists can evaluate the stability of each medical problem. For example, a neurologist can assess seizure stability; a pulmonologist can assess respiratory health; a gastroenterologist can determine if there will likely be an impact on intestinal motility and/or risk to nutrition. If you and the medical team agree that surgery makes sense, this full assessment will guide how to optimize your child’s health before and after surgery.
All surgery involves planning for care after discharge from the hospital. If you and the care team have decided on surgery, you will be thinking about what you will need to do to prepare your child and your living space. Ask the care team and, if possible, another parent who has had this experience. Questions might include:
- How long do children whose condition is like my child’s remain in the hospital after surgery? What is the longest hospital stay you have seen?
- Will I be able to accommodate the temporary mobility changes in my child at home, or will they need to spend time in a rehabilitation or residential placement?
- Will we need special equipment to transport our child from the hospital? Or return for clinic visits?
- Is there any equipment that will be needed at home, like a reclining chair? How do we obtain it?
- How long is the recovery period? How likely is our child to need more or less time?
- How long before the child can resume normal activities, like school or play?
- Will there be changes to how we transfer our daughter at home? How long will that be needed?
Trying to maintain your child’s ability to be ambulatory may feel like an especially daunting responsibility. You may find that despite your best efforts, your child’s subluxation progresses, and they may become unable to move without support. This is a very difficult transition both emotionally and practically, with impact on how you care for your child within and outside the home. You and your co-caregiver, if you have one, may need to talk through your feelings and concerns with members of the medical team who can help clarify what is most important for you and your family.