Advocacy in the Hospital
Parents and caregivers of children with SCID will spend much of their time in the hospital caring for their child. While healthcare professionals do have the child’s best interest at heart, most times the child is not their only patient and sometimes important care activities may be overlooked or not done correctly. It’s up to parents and caregivers to advocate for their child and speak up if there are questions about the care their child is receiving. The following is a list of tips to remember when negotiating the many healthcare professionals that will come into contact with the child.

• Ask questions of doctors. Bring a notebook and pen to appointments to record notes, and to jot down questions that may arise later.
• Request to be in a unit of the hospital that provides the baby with the best isolation. The baby should be in a single room.
• Make sure that healthcare professionals entering the room follow practices consistent with what the doctor in charge has directed. That could include washing and disinfecting hands, and wearing mask, gloves, and gown.
• Don’t be afraid to be assertive. The baby’s health is more important than risking what may be perceived as being rude to a healthcare staff. Most healthcare staff, including doctors, welcome questions and view the parents and caregivers as part of the child’s healthcare team.
• Parents should trust their instincts and question procedures that seem illogical. For example, if instructions to not feed the baby for what seems like too long of a time before surgery seems illogical, inquire about changing that schedule.

Advocacy with Home Healthcare Nurses
After the child is discharged from the hospital post-treatment and is allowed to go home, families might have a home healthcare nurse visit to follow up. The following are tips to remember when allowing a nurse into the home.

• The nurse should not visit if he or she is sick with a cold or virus.
• The nurse should wear disposable medical clothing including gown, mask and gloves.
• Ask ahead of time if a student nurse will accompany the licensed nurse and decide if you prefer to limit visits to just one person.
• If parents are not satisfied with the nurse, they should call the agency to express their concern.

Advocacy and Recordkeeping
Parents and caregivers of a child with SCID will be the voice of that child for years to come. Because SCID is such an unknown condition, parents are advised to keep a copy of all medical records, including test results and informational sheets, so that other future healthcare workers, as well as staff at schools, can be educated on the child’s condition. Get a copy of medical procedures and test results and keep them in a binder. Electronic copies are more difficult to organize and present at meetings with other people.

Suggested sections of the binder could include lab work, hospitalizations, specialists, pathology reports, X-rays, intravenous immunoglobulin orders and emergency room visits.

Advocacy and School
Though a child with SCID may develop a healthy immune system after treatment, it’s important to inform school staff about the child’s health condition, and to obtain a 504 Plan. The 504 Plan requires by law that school staff make accommodations for a child with a disability.

In the case of a child with SCID, the diagnosis of SCID qualifies as a disability. Even though your child may be doing well following treatment, it is a good idea to develop a 504 Plan as a safety net in the event of excessive absences or a disease outbreak at the school. A 504 Plan will provide you with options that you might not otherwise have. What to include in your 504 Plan:

• The school will make accommodations, such as providing missed school work, allowing test make-ups and offering extended time for homework, should the child be absent from school.
• The teacher will wipe down desks with disinfectant each day.
• The child will use only his or her own school supplies, and not share with classmates.
• The child will have access to a clean bathroom.
• The school will alert the family if there is chicken pox or measles exposure.

Parents are advised to meet with school administrators and the teacher on a yearly basis at the beginning of school.

For a more extensive guide on communication with school officials about a child with SCID, click here to download the Immune Deficiency Foundation’s School Guide for Students with Primary Immunodeficiency Diseases.