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. It is a devastating blow to the family and your life as you know it. Parents experience a range of emotions from shock, disbelief, anger, fear, guilt, sadness, anxiety, numbness and many more. Many parents feel so overwhelmed; they don’t know how they will cope.

For some parents, finding out that your child has an incurable or life-threatening health condition is a gradual realisation as various symptoms become apparent, and for others it can be discovered completely out of the blue as a result of birth asphyxia, an accident or even during a routine health check.

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

Each family’s situation is different and their responses will be different. It is therefore important that the healthcare professional working with you respect the individual needs of your family. You have the right to be told of your child’s diagnosis in a sensitive and compassionate manner, in private and by a professional who uses language and medical terms that you can understand.

Make sure you ask them to repeat anything you don’t understand or to explain using diagrams to clarify what they’ve said or to give you written information that you can refer to later. It is also important that the healthcare workers make sure that you fully understand what your child’s condition means, and the implications it may have on the whole family in the short to medium term. Remember that it is almost impossible to fully take in complicated information when you are dealing with the initial shock of the news.

This is a critical time. It is a time when your life is suddenly and irreversibly turned upside down. Making sure that you understand what the condition is, how it can be treated and/or managed, and what support is available to you, can help you come to terms with the changes that will happen in your family life and to plan ahead so that you can ensure that your child has access to quality care to enable him or her to have the best quality of life possible.

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