AUSTRALIA : NEW SUPPORT FOR PARENTS FACING DEATH OF BABY

Catholic Communications, Sydney Archdiocese REPORT
22 Aug 2012


New support for parents struggling to come to terms with a devastating diagnosis
For any family, being told their unborn child has a fatal or life-limiting condition is heartbreaking. But thanks to Catholic Health Australia (CHA), a first-of-a-kind website now offers support, guidance, comfort and perinatal palliative care for parents and families faced with such a tragic diagnosis.
"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 their child has a condition that will result in the child's death soon after - or even before - he or she is born," Martin Laverty, CEO of CHA said this morning when he launched the website at CHA's annual conference in Perth.
The website, pnpc.org.au, offers parents and their families a wide range of resources, a chance to share their grief and emotions with others who have experienced the same bittersweet journey, as well as all important emotional, spiritual and practical help.

Martin Laverty Chief Executive Officer of Catholic Health Australia
"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 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," Martin Laverty says.
Parents faced with a diagnosis their much loved, much wanted baby is unlikely to survive are shocked and devastated. A time that should be filled with joy is suddenly filled with sadness. But until now there has been little support for parents or their families as they struggle to cope with such a grim diagnosis as well as the challenges of continuing with the pregnancy where the baby may die at any time or shortly after he or she is born.
"With the website we also aim to give families information about the range of conditions that may result in these diagnoses and offer advice on where they can find help," says Martin Laverty, CEO of CHA.
While those who have had to deal with anguish of their unborn child being diagnosed with a life-limiting condition, many parents who share their stories on the website speak of the joy of meeting and holding their baby, and of being a parent to a much loved child, if only for a short time.

Decision to continue with pregnancy can be heartbreaking
Those who share their stories and bereavement counsellors encourage parents to embrace their baby no matter how brief the time they may have together, even if that time is limited to the period the child is safely cradled inside the womb.
The experience of those who met and held their baby and spent time with them, even when the child was still-born, will also help provide some parents with answers, comfort and a way forward.
With the support of CHA the website has been developed in collaboration with Catholic hospitals such as Melbourne's Mercy Hospital for Women, Calvary Healthcare and Brisbane's Mater Mothers' and Mater Mother's Private Hospitals, all of which provide a wide range of perinatal palliative care services to help families from the time of diagnosis until their child's death and beyond.

Every moment with a baby is valuable even if such time is brief
"Families need to receive the best possible medical care 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 and unlikely to survive," Mr Laverty says.
The website can be accessed by logging on to www.pnpc.org.au
shared from ARCHDIOCESE OF SYDNEY

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