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 |