Digeorge Syndrome

There's no cure for DiGeorge syndrome, but many of the problems experienced by people with the condition can be monitored and treated if necessary.

Your child will have regular tests from infancy onwards, including:

• hearing tests and eye examinations
• blood tests to check hormone and calcium levels
• medical tests of their immune system
• kidney and heart scans and tests

Before they start school, your child's developmental progress and speech and language development should be carefully assessed. If your child has a learning disability, their educational needs can be met either in a mainstream school with extra support, or in a special school.

Speech therapy can help with speech problems, and dietary changes or tube feeding may be needed temporarily to help with swallowing or feeding difficulties.

Surgery may be needed to correct any severe problems, such as heart surgery or an operation to reduce the amount of air escaping through their nose (if your child's speech is very nasal).

You may find it useful to discuss your concerns with a social worker, psychologist or counsellor, who you can contact directly or via your doctor. Less than 5% of babies die before their first birthday.

As a child with DiGeorge syndrome gets older, physical features such as heart andspeech problems tend to become less of an issue,but behavioural, learning and mental health problemsmay affect daily life.

Many of those who reach adulthood will have a relatively normal life span, although for some people, ongoing health problems mean their life expectancy is lower than the average. Regularcheck-ups are necessary to monitor the condition.

Adults with DiGeorge syndrome are often able to live independently and have jobs, although some people experience social isolation and employment problems as a result of their condition.