Being told that your child may not reach adulthood is something you hope will never happen to you, and no-one can be prepared for it. When it does happen, many parents don’t know where to start, emotionally or practically.

For some parents, finding out that your child has a serious health condition is a gradual realisation as various symptoms become apparent, and for others it can be discovered completely out of the blue during a routine health check.

Even when you know your child has a serious health condition, it is often difficult to then accept that this condition might cause them to die in childhood or young adulthood.

All these different factors mean that the way each family deals with the news will be completely unique, and it’s important for health professionals working with you to respect the individual needs of your family, understanding that everyone is different.

Together for Short Lives believes that it is incredibly important that you as parents are told of your child’s diagnosis in a sensitive way, in private, and that whoever is having the conversation with you ensures that you fully understand what your child’s condition means, and its implications for the future, for the whole family. Make sure you ask them to repeat anything you don’t understand, or to give you written information to clarify what they’ve said or to refer to later. It’s hard to take complicated information in when you’re dealing with the shock of the news.

This is a critical time. It’s a time when your life will be turned around. But making sure that you understand what is going to happen and what support is now available to you will help you come to terms with the changes to your family life, and plan for the future.

You need to make sure that as well as dealing with the practical aspects of living with a child with a serious health condition, that you, your child and your family come to terms emotionally with the fact that your child may not live the life you had planned for them.

There are lots of things to think about just after your child has been diagnosed, and you’ll need to work out a way to explain to any other children you have. Make sure you take things at your own pace, and if you ever feel like you can’t cope, make sure you talk to a friend, or go see your GP.

Further information can be found in the Diagnosis or recognition section of A Family Companion.

If you have questions or want support, please contact our Together for Families Helpline free on 0808 8088 100. The helpline is open from 10am until 4pm, Monday-Friday.  Outside of these hours and on Bank Holidays, do leave a message on our answer phone and we will return your call as soon as we can.

You may have been told that your child might not live to adulthood, but not have been given a specific name for their condition. Because there are so many rare and complex childhood conditions, it is not uncommon for this to happen. It can however make you feel even more uncertain about your child’s future and can feel isolating. SWAN UK (Syndromes without a Name) is a support network run by the charity Genetic Alliance UK offering support and information to families of children and young adults with undiagnosed genetic conditions. You can find out more at or by calling 0207 831 0883..