Support After Fetal Diagnosis of Abnormality (SAFDA)
Support After Fetal Diagnosis of Abnormality (SAFDA), based at the Women’s and Children’s Hospital, offers counselling and resources for families before and after termination of pregnancy due to fetal abnormalities.
Termination of pregnancy for fetal abnormality is well recognised as a traumatic experience for families. Many couples will learn to cope following termination of pregnancy for fetal abnormality. However, some couples will benefit from additional support. For many years, it was difficult for families to receive support and acknowledgement for this complex grief.
SAFDA (Support After Fetal Diagnosis of Abnormality) was established in South Australia in 1999 to support parents and families before and after termination of pregnancy for a fetal abnormality. From its inception, SAFDA offered peer support meetings, a regular newsletter, telephone contact with experienced bereaved families, resources, education of health professionals and one-on-one counselling.
In recent years, families have been able to access support more readily, both within the medical field and the community. Anecdotally, we see the rise of social media providing opportunities for families to connect and feel heard within the comfort of their own home and even anonymously. With attendance and enquiries about SAFDA reducing each year, it has become unsustainable to offer the services previously offered under SAFDA.
The Paediatric and Reproductive Genetics Unit, based at the Women’s and Children’s Hospital, was the professional arm of SAFDA (in partnership with experienced consumers) and will continue to offer counselling and resources for families in this setting. Please contact the Genetics Service (on 8161 7375) should you wish to talk further about your support needs.
Red Nose (formally Sids and Kids) and Sands (miscarriage, stillbirth and newborn death) are nation-wide support groups that amalgamated in 2019-2020. Their scope has expanded to include termination of pregnancy and they offer peer support as part of Sands. They are also working towards offering a range of support for families following termination of pregnancy. Please see the Sands website for more information.
Over the years, many support services have provided resources, which may include fact sheets and a list of recommended books. Below is a selection of resources we have relied on in the past. This list is not exhaustive, but it is a safe place to start if you wish to seek more information.
- Health Talk Online: Ending a pregnancy for fetal abnormality
This is a UK-based website with videos made by couples who have had a termination of pregnancy for fetal abnormality. There are also sections on this website about the decision-making process, partner support, the experience and grief.
- A Heartbreaking Choice
This website has a moderated listserv. They have a list of books about grief and loss, as well as a collection of stories about the experience of grief (especially following termination of pregnancy).
- Antenatal Results and Choices (ARC)
ARC is a UK-based organisation that assists couples with navigating the range of testing available in pregnancy. One of the sections on this website is about termination of pregnancy and includes some brochures designed for families.
- Centre for Genetics Education (NSW)
This NSW government resource includes fact sheets on many genetic conditions and a useful booklet “Diagnosis of Abnormality in an Unborn Baby. The Impact, Options and Afterwards.” They also list the Clinical Genetics Services around the country and an overview about genetics and inheritance as well as genetic counselling.
- Genetic counselling
Pregnancy, Birth and Baby website (healthdirect; Australian Government).
- Women’s and Children’s Health Network – Grief support following the death of a child
Although this is a resource written for families and professionals around the death of a child who has been born, much of the discussion about the emotions and process is relevant and helpful.
Paediatric and Reproductive Genetics Unit
Women’s and Children’s Hospital
(08) 8161 7375