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.
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. Meet with school officials to obtain a 504 Plan. A 504 Plan requires the school make special accommodations to keep your child healthy. Those might include making sure desks are disinfected each day and contacting you if there is an outbreak of sickness like flu or chicken pox at the school.
Another consideration as your child gets older is whether or not you want to have more children. Meeting with a genetic counselor to discuss the possible outcomes of future pregnancies is recommended.
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.