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Table 1 SCID Journey Stages

From: Parental coping with uncertainties along the severe combined immunodeficiency journey

SCID journey stage

Description

Diagnosis

Parents receive their child’s abnormal SCID screening results and follow up with their child’s provider. SCID diagnosis is confirmed, and parents are often referred to a specialist to discuss next steps for their child’s treatment

Pre-treatment

The child is admitted to the hospital or sent home and isolated. Treatment options, either HSCT, also known as bone marrow transplantation (BMT), or gene therapy are discussed/decided

Treatment

If BMT is selected as a treatment option, donor match is found. If required, chemotherapy is administered, followed by the selected treatment (BMT or gene therapy)

Post-treatment

Parents are waiting at or near hospital/treatment center to determine if treatment takes effect. This waiting period can take up to several months. The baby is discharged/sent home if treatment is effective. More treatment may be necessary

New normal

Parents and the child return home. The family tries to adapt to life after treatment. The child still requires continued follow-up and may require some medication. This stage can last from a few months to years