“When our oncologist broached the idea of palliative care, she pointed out that it was not an admission of defeat against Sylvie’s disease. The care would step in and help as necessary, and step out when no longer needed. Even so, at the time we thought that it was the beginning of the end. Our perspective has changed since then.”
Receiving the news that your child has a life-limiting condition can be overwhelming. It can be difficult to take in the information that you have been given and it takes time to come to terms with the devastation that this news brings. With advances in imaging (e.g. ultrasound, MRI) and genetic testing, more families are receiving the news of a potentially life-limiting condition antenatally (before your baby is born). Parents often have to deal with the sadness regarding the diagnosis in the here and now, but also the sadness at the possibility that their child may not have the life that they had imagined for them.
One of the most difficult things for families to deal with is the uncertainty that usually comes with the knowledge that your child has a life-threatening or life-shortening condition. There may be uncertainty about prognosis, treatment pathways, sharing the news with others, or, in some cases, uncertainty about the diagnosis itself. In some cases, despite the best efforts of the healthcare professionals, it will not be possible to give a name to your child’s condition. This can be incredibly difficult for parents to accept because it can lead to even more uncertainty about the future.
It is important to remember that each family is unique and responds to the diagnosis in a different way. This is perfectly normal and there is no correct way to deal with it. You may find it useful to speak with close family and friends but for some it might be more appropriate to seek professional support. There are many organisations available to help parents to cope with their child’s diagnosis – links are available throughout this website.
One of the most important things to think about is how you will speak to your child about their diagnosis. It is important to also remember the needs of other children in the family. Parents understandably can find sharing this information very difficult and may try to postpone it for as long as possible. However, research shows that open and honest communication with children, in an age and developmentally appropriate way, leads to the best outcomes. There are many resources available to help you with these conversations and the healthcare professionals involved in your child’s care should also be able to provide support and guidance.
Many parents find it difficult to take in the information that they receive about their child’s diagnosis. You should feel comfortable requesting open and honest, face-to-face conversations with the healthcare professionals looking after your child. Many parents find it useful to write down questions before these meetings. You may also find it helpful to have another person, such as a partner or other family member, present with you to provide support and to help with recalling information afterwards. Be sure to clarify anything you don’t understand and, if required, an interpreter should be provided to assist.
In conclusion, receiving the news that your child has a potentially life-limiting condition can be overwhelming and it can be difficult to see how you will cope. There are many resources available to help you with the various challenges that you face, and your child’s healthcare team will continue to support and guide you through this journey.
Written by Dr. John Allen, 2024
