Once a child is diagnosed with SCID, reducing the amount of germs the child is exposed to is essential. If the doctor recommends that the child stay in the hospital before treatment, then the hospital will put in place procedures to minimize the risk of infection through reverse isolation.

If the child is sent home before treatment, healthcare providers can provide instructions to help reduce the chance of infection through at-home isolation procedures.

Germs in the hospital

If the child stays in the hospital after diagnosis, then the child will typically be in what is known as “reverse isolation.” Reverse isolation is designed to protect the child from other people’s germs, as opposed to protecting other people from a patient who might be sick. When a child with SCID is in the hospital in reverse isolation, visitors who are sick should not be allowed in the room.

In reverse isolation, the child may be in a room with a special air filtration system. Visitors, including both family and medical staff, must follow a strict handwashing regimen. Visitors must also wear a mask, gloves, and a hospital gown. No food, except for the child’s food, is allowed in the room.

Germs at home

If the child stays at home in isolation before treatment, then parents or caregivers must do their best to reduce germs in the home. The child must stay in the home, and not venture outside or to public places, as germs thrive in those locations and cannot be controlled or reduced by caregivers.

Children born with SCID are susceptible to infection by all types of germs including viruses, bacteria, and fungi. Any of these infections are life-threatening and could weaken the child before a hematopoietic stem cell transplantation treatment (or HSCT) and make this treatment less likely to work. Here are eight simple precautions to prevent the spread of germs in the home.

• Wash hands regularly, especially before touching the child. Hand washing with soap and water for at least 20 seconds reduces germs. Be extra careful to wash before and after changing diapers, after going to the bathroom, before preparing food and after sneezing or coughing.
• Do not allow visitors to the home, beyond those who live there.
• Do not take the child with SCID out of the house to any enclosed public places like church, shopping, or daycare, until doctors allow the trips.
• Brothers and sisters should not be allowed to touch the child. If brothers or sisters attend daycare, or religious or academic school, the possibility of bringing germs into the home represents the greatest threat to the child.
• Keep anyone who is sick, even with a cold, away from the child.
• Alert the school where brothers and sisters attend that they have a sibling with no immune system and that parents must be contacted if there are any infectious break outs at school (see chicken pox protocol below).
• Relocate pets, if possible.
• Keep home clean by wiping surfaces with disinfectant.