Families dealing with the challenge of a life-limiting condition in their unborn child have a valuable new resource to help them decide how to proceed with their pregnancy following today's launch of a first-of-its-kind Australian website.
In Perth this morning, the Perinatal Palliative Care website, which can be accessed at pnpc.org.au, was launched at the Catholic Health Australia national conference. The website was developed as a collaboration of hospitals that provide perinatal palliative care services and supported by Catholic Health Australia.
"Without having experienced it personally, it is impossible to know the range of emotions that run through the minds of families when they find out that their child has a condition that will result in the child's death soon after – or even before – he or she is born," said Catholic Health Australia CEO Martin Laverty.
"Through this project, we have been able to hear from parents who have made the decision to continue with the pregnancy and share the joys and sorrows that the experience created for them. We also spoke with clinicians and genetic counsellors, bereavement counsellors and pastoral care workers to offer their perspective on how families deal with such a difficult situation."
Mr Laverty said the aim of the website is to give families information about a range of conditions, advice on where they can find help and also to share stories of people who lived through the experience and are thankful for what has been described as a bittersweet journey.
Mercy Hospital for Women in Melbourne, as well as Mater Mothers' and Mater Mothers' Private Hospitals in Brisbane are three of the facilities that provide a range of services to help families from the time of the diagnosis to the child's death and beyond.
"Families need to receive the best possible medical advice they can, but they also need support from people who have experience in dealing with the emotional aspects of preparing for the birth of a child with a life-limiting condition," Mr Laverty said.
"What we heard as we went around the country were stories of people who faced such a situation with great courage and, by doing so, were able to value every moment they had with the child – even if the child died before birth or lived for only a few minutes or hours.
"People can often be confused and feel isolated when they receive difficult medical news for themselves, and possibly more so when it affects their child. Information, resources and the videos we've been able to create can help empower people with knowledge as they come to terms with the situation in which they find themselves."
Visit the new website at pnpc.org.au