Caring for a child with SCID changes you. It may make you weary and stressed, but it can also make you more resilient. SCID is a journey and that journey requires you to take one day at a time, celebrate the joy of small accomplishments, and be present in the moment with your child.
Your child may build a healthy functioning immune system after treatment. Or your child’s immune system may still be compromised afterwards, requiring regular immunoglobulin treatments.
Either way, you must view the world through the lens of SCID. Certain adjustments and considerations must be made.
IDF's SCID Compass program highly recommends annual or bi-annual lifelong medical evaluation of all persons with SCID – regardless of age, treatment type, or treatment timeline – in order to ensure their immune systems are functioning normally and to identify any side effects from treatment. Click here to read recommendations on long-term follow-up for SCID. Click here to listen to a podcast about long-term follow-up for SCID.
Because your child will spend a significantly long time in the hospital and in isolation at home, he or she may be behind in developmental skills such as speech and motor skills. You may want to consider asking whether or not your child would benefit from early intervention such as speech therapy or occupational therapy.
Enrolling in School
School is another area where your child’s SCID diagnosis must be addressed. In addition to private therapies, the county or district in which you live may provide early intervention programs for which your child may qualify. These programs - sometimes known as Child Find, Bright Beginnings, or Infant and Toddler Connection - provide resources to help a child who has experienced developmental delays for any reason. Some programs begin as early as infancy. Others begin at age 3.
Contact your local school district to determine how to proceed and determine if your child qualifies. Even if your child is still in isolation, he or she can benefit from one of these programs. Homebound resources can be provided if necessary.
When your child begins a public or private-based education program they should be covered by a 504 Plan or an IEP (Individualized Education Program). Meet with school officials several months prior to enrolling to determine which plan is appropriate for your child.
The IEP is a legal document that is developed for each public school child in the U.S. who needs special education. The IEP is created through a specific team of the child's parent and district personnel who are knowledgeable about the child.
Not all children require specialized education, in which case a 504 Plan may be appropriate. A 504 Plan requires the school to provide special accommodations to keep your child healthy. Accommodations might include making sure desks are disinfected each day, contacting you if there is an outbreak of sickness like flu or chickenpox at the school, or removing penalties for days missed for medical reasons. An appropriate label for a child with SCID who requires either plan might be "Other Health Impaired."
Maintain Mental Health
One final consideration is making sure that you are in the best emotional state possible so that you can support your child through all of his or her stages. That’s why you may want to seek a therapist trained in trauma to help you manage the stress that occurs during this difficult time. Parents of chronically ill children bear incredible burdens and you don’t have to do it alone.
Richard and Sy Wu discuss exploring the future for their son, Jason, one of their triplets. Jason was diagnosed with X-linked SCID as a newborn.