Associated issues in SCID
Prolonged hospitalisation, separation from extended family, blood tests and
uncomfortable procedures will contribute to a great deal of stress and anxiety and even guilt for parents of a child with SCID. Support is available from psychologists, social workers and Immunodeficiency UK.
It may be possible for your child to go home for a period of time before he or she
goes ahead with corrective treatment. In this situation the immunology team will
contact local doctors and community nurses beforehand to make arrangements if treatments need to be given at home or in the local hospital.
Most parents are delighted to get home, but it can be a worrying time. Anxiety about catching or passing on an infection can make life very stressful. The hospital team, nurses and support groups will provide you with guidance on protecting your child from infection, keeping the house clean and coping with diet and medication. If you are worried at any time, you are always able to ring the hospital and speak to an immunologist or a nurse.
Please take a look at our webpage on counselling and emotional support for parents of children affected by PID.
Reviewed April 2017