Together for Short Lives family resources are created to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition. They are free to download from their website, but many are also available in hard copy should you need them.
Link to website: Family Resources
The document is written in a simple question and answer style format, and includes some of the key questions or concerns regarding critical care.
Link to Download: A Parent’s Guide – Making Critical Care Choices for your Child
Learning that a child has a life-limiting illness can be devastating. After learning the typical prognosis for the disease, it is not unusual to worry about the future and anticipate what’s to come. But with a slowly regressing illness, there is a lot of time to understand what you will need medically and emotionally. There will be time to connect with others and gain support; there will be time to explore treatment methods.
Link to Download: Toolkit: Parenting a Child with a Life-Limiting Illness
This booklet is a resource for parents who have had conversations with their care team, either during pregnancy or after birth, that their baby’s future is uncertain.
Link to download: Caring for your baby when the future is uncertain
