Welcome to the SCID Compass Website

Not only is this website designed to be a trustworthy resource to answer your questions, but it is also a place you can find support.

Learning that your newborn child has severe combined immunodeficiency, or SCID, can be overwhelming and you are likely feeling anxious. It’s perfectly normal at this point to feel confused and afraid about the diagnosis. After all, SCID is probably not a medical condition you’ve ever heard of, and no one ever expects their baby to have it. Let us share with you what SCID is and how you can move forward to best care for your baby.

Lack of Immune System

A baby with SCID has little to no immune system. The immune system is made up of cells that fight infection. All babies with SCID share the problem of being born with either no T cells or too few T cells. The numbers of normal T cells in your baby are extremely low or are not made at all.

T cells are essential for the immune system to work properly. If your baby catches a cold or other infections, he or she might not be able to fight it off like most other people. The cold could get worse and be life-threatening.

Doctors diagnosed your baby with SCID through newborn screening and additional testing. Newborn screening showed doctors that the T cells responsible for fighting infections were extremely low in your child.

Isolation

Because your baby has no way to fight off germs, you and the doctors have to work together to keep the baby in an environment with as few germs as possible until the doctors choose the right treatment. One way to decrease the number of germs your baby is exposed to is to limit the number of people that can be in your baby’s room. This is called isolation. Isolation may take place in your home or at the hospital. In either place, the goal is to prevent the baby from being exposed to germs that can make the baby sick.

Early Treatment

If your baby has SCID, it’s extremely important to get early treatment. If a baby with SCID is treated within the first few months of life, prior to developing infections, then the baby has a much better chance of being healthy. Without treatment, the baby will die within the first one or two years of life.

SCID Causes

Most cases of SCID are caused by an abnormal gene passed down from parent to child. The genes, located on chromosomes in the cells of the body, control the cells. SCID is caused by mistakes in one of the genes that are needed to make T cells. Regardless of which gene is abnormal, the result is a significantly reduced number of T cells, which are required for a normal immune system.

Sometimes the treatment for SCID may differ depending on which gene is abnormal. Healthcare providers will refer to the type of SCID depending on the gene that is abnormal. For example, ADA-SCID is a type of SCID caused by an abnormal ADA gene.

Prevent Infection

As you and your doctor move forward to treat your child, here are some other initial considerations to help prevent infection during this critical period.

• Your baby should receive no live vaccines.
• The baby’s mother should undergo a test for CMV before breastfeeding.
• Your baby is extremely susceptible to any infection.
• You should adhere to isolation requirements and limit visitations.
• Anyone who is sick should not visit the baby.

If you are feeding the baby formula, consider following the recommendations.

• Ready-to-feed single serving liquid is safest, as it is manufactured to be sterile. Any unused formula should be discarded within an hour of breaking the seal on the container.
• Powdered formula is less safe because it is not sterile. However, if a ready-to-feed liquid alternative cannot be used and you must use powder then:

Option 1: Use with boiled water. Bottled water is not acceptable. After boiling, cool the water in a refrigerator so that it can be served soon. Any that isn't consumed should be discarded within an hour of turning off the heat on the boiling water.

Option 2: Use with bottled water that is filtered (not spring water) and process it further through a reverse osmosis filter before mixing with powder.

It’s not easy to hear from your doctor that your child has SCID, but remember that you are not alone. There are other families whose children have SCID, and those families, along with SCID Compass, are here for you. Through its support groups and resources, SCID Compass can connect you to those families so you receive the emotional support from those who have traveled this path.