From the time they are born and throughout childhood and adolescence, children may develop serious diseases that limit their life expectancy or cause them life-threatening after-effects.
Despite scientific and medical advances, children in our setting still die. Children who have a serious illness go through a long process with different stages. This affects the lives of everyone around them and turns their worlds upside down.
Every process involves different stages, which in this case would be as follows:
Stage 1: Diagnosis
If your child is in this situation it is possible that the first major challenge was to accept the diagnosis. Or perhaps the lack of diagnosis, since it is not always easy to put a full name to an illness.
Sometimes, despite every effort, a definitive diagnosis cannot be made.
Stage 2: Treatment
At this stage the goal is to find and apply the best treatment for your child. At SJD Barcelona Children's Hospital, new treatments are used, and our specialists are in contact with professionals from around the world to find alternatives we think might benefit each child.
Unfortunately, it is not always possible to provide a curative treatment, and the goal then becomes to prolong life, often for years, with the highest possible levels of quality and dignity.
This stage can last some time. You, your child and your family may be in a very vulnerable, fragile and complex situation that can greatly affect you all on many levels: physical, emotional, social, economic and spiritual ones.
This situation requires management and support from different disciplines, both medical as well as other fields. At our hospital, or in another medical centre, all attempts will be made to provide this.
Stage 3: Palliative care
We are convinced that all children who suffer limiting or life-threatening illnesses and their families should receive palliative care as soon as the disease is diagnosed.
This care is a comprehensive, integrated and inclusive model to meet all needs.
The staff in the Palliative Care and Complex Chronic Patient Service at SJD Barcelona Children's Hospital consists of paediatricians, nurses, a social workers, a psychologist and a chaplain. Working together and having all the members of staff available to assess the problems of each child means that the care can be personalised, taking into account the child's history and current situation.