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Finding out that your baby has been diagnosed with SCID can come as a shock. Many parents of children diagnosed with SCID report that they felt numb and overwhelmed in the beginning. Parents are still trying to process what SCID is and at the same time work with specialists, hospital social workers, and other medical staff to create a treatment plan.

Parents may be inclined to not want to communicate with family members or friends about the diagnosis. It’s difficult to share the news that a newborn baby has a life-threatening condition, particularly when the baby may appear healthy. SCID can also be a complicated medical condition to explain and parents don’t feel knowledgeable enough to share it with others.

While some parents may not want to reach out to family or friends, all parents should consider making connections with other families whose children have SCID. Reaching out to other families provides insight and support not available through any other source. Only families whose children are coping with SCID can fully understand the experience.

Hospital Tips

Hospital stays will be required for testing, treatment and, if needed, recovery time from infections. Find out what to expect to make the best use of your time in the hospital.

Advocating for your Child

Parents and caregivers of a child with SCID will be the voice of that child for years to come. Go here to learn more about managing your baby’s care.

Coping with Isolation at Home

Families who have children with SCID will experience not only isolation at the hospital, but also at home.

Support Groups & Resources

Click to find a list of groups and resources that can provide opportunities to network with other families who have experience with SCID.

Preparing Your Home Post-treatment

Once a family’s time in the hospital or in a temporary apartment comes to an end, the family must consider how to prepare their home for the arrival of their baby.

Mental Health Considerations

The following resources are helpful in answering questions parents and caregivers have about SCID.

Q&A with SCID Families

Hear from parents learning to cope with SCID.

Financial/Insurance

Even with health insurance, caring for a baby with SCID will result in additional healthcare costs.

Family Planning

The decision to have more children after caring for a child with SCID can be a difficult one for some families. Each family will have their own factors to consider.
Publications and Resources

IDF offers many downloadable and hardcopy publications and resources related to SCID. Here you'll find general information sheets, long-term follow-up recommendations and much more.