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There will be pre-treatment isolation and post-treatment isolation periods when the baby is not allowed to leave the home, except for maybe brief walks outside. Areas outside the home present greater risk of germs in the form of bacteria, fungi, and viruses in the air, on the ground, and on other people.

Until several months post-treatment, isolation will continue to be more restrictive because the baby has not developed an immune system yet. Below are some suggestions for at-home isolation.

  • Connect with family and friends through video chat and social media, and reach out to other families who have children with SCID. Sometimes more experienced families can provide tremendous insight and support.
  • Enjoy downtime as a family, interacting with the new baby, taking photos, reading to the baby, doing tummy time and dressing the baby in new clothes.
  • For parents, board games and cooking can help pass the time.

After the baby undergoes treatment and comes home, the family must take care to protect the baby from germs. However, in post-treatment, as time passes, the baby will be allowed to venture outside of the home for short durations of time. Doctors may permit short walks outside in the open air, as long as the baby is not near people or a construction site, which can transmit mold.

Families at this point in time are making a transition to a “new normal.” Not only are they now caring for their new baby by themselves without help from hospital staff, but they must be careful about the cleanliness of their home and the health of their baby. Below are some additional tips for coping with isolation in post-treatment.

  • Ask a family member for assistance and have a date night out with the spouse.
  • If the main caretaker of the baby is employed, request to work remotely.
  • Exercise outside alone, or when the baby is cleared to go outside for walks.
  • Go shopping for the baby.
  • Take time for self-care, such as haircuts, manicures, massages, and keeping up with your own doctor appointments.