Finding out that your baby or child has an immunodeficiency often happens after a series of illnesses, and some people experience a long delay in getting the diagnosis. During this time, you may feel that your concerns are not taken seriously and may even begin to doubt your own judgement. If you have a ‘gut’ feeling that things are not right, it can be particularly hard.
On receiving a diagnosis
Once given the diagnosis you may experience a whole range of feelings from relief at finally finding out what is wrong, to anger or sadness or just feeling overwhelmed. There is definitely no ‘right’ way of reacting or adjusting to the diagnosis but once treatment has started, hopefully, you can see the benefit of your baby or child feeling better, with more energy and fewer infections.
This information was written by Dr Penny Titman, Consultant Clinical Psychologist, Great Ormond Street Hospital for Children, London (January 2014).