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Palliative Care

This section deals with Palliative care issues for SMA patients.

When a baby is diagnosed with SMA Type I there are additional considerations that are both difficult and emotional. There is no right answer, which can often make the decision even harder. Simplified, there are two basic approaches:

Some families choose a more active intervention approach. This involves selecting the most effective measures to support and extend a child's life.  For others the course of action involves palliative care. These parents elect to give their child supportive care while he or she is with them, but to avoid extraordinary measures to prolong life.

Before you, as a parent, make a choice between these options, there are several thoughts to consider. These are not a checklist, but rather a guide to help you arrive at the best decision for your child and your family.

  • Are you comfortable with your physician, and the diagnosis? Don’t be afraid to get a second opinion from a clinician who regularly works with SMA patients.
  • Have you investigated all options? There is a lot of information available to help you make an informed choice. The FSMA web site is one location, talking with other SMA parents or doctors and clinicians may also help you to understand your options.
  • Do you agree as a couple on your choices before your child's situation becomes critical? If you are a single parent, do you have a friend or family member who can help you think through your decision? A professional counselor may help support you in thinking through your choices as an individual or a couple.
  • Remember throughout this process that you are not alone in this situation, but it is your decision. It helps many families to seek spiritual guidance from a trusted source or to turn to the FSMA office and chapters. All FSMA representatives pledge to offer non-judgmental support, without pressuring you to chose one way or another.

Palliative care can include several medical care options:

  • use of oxygen
  • having a g-tube placed
  • medications to reduce the child's discomfort or anxiety
  • suctioning
  • antibiotics
  • chest physiotherapy
  • physical therapy and massage

If you wish to select a palliative care approach, discuss your specific options and treatments with your doctor. For more information, see the Respiratory Care and the Grief and Loss sections of our web site, or call the FSMA office for a referral to one of our medical advisors.

Remember that only you truly know the best choice for your own situation. Every child and every family is different. You are the one that has to live with your choice.

Additional Sources of Information
  • No Harder Choice
    Kathleen Kernicky, Staff Writer January 26, 2003. South Florida Sun-Sentinel
  • Our Shooting Star
    by Shaina Rappoport


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