Presenters – Australasian Perinatal Loss Conference 2020

Bringing the grief of infertility out of the shadows

The experience of infertility and its treatment can bring unexpected emotional reactions, and for many, there is intense grief for the loss of a the anticipated “easy” journey towards parenthood.  Narelle will provide an overview of the experience of infertility and the common emotional reactions associated with assisted reproductive treatment, and provide a framework for treatment to professionals who support parents whose fertility has been compromised.

Narelle Dickinson is a Brisbane-based Psychologist endorsed in both Clinical and Health Psychology. Specialising in the perinatal field, Narelle provides support to families before, during and after pregnancy. Within this, she works with families struggling with infertility, including those who utilise donor conception and surrogacy. As part of her perinatal practice, Narelle supports families who have experienced perinatal grief and loss, including in the context of pregnancy decision making after diagnosis of fetal abnormality. She is a 2015 Churchill Fellow Recipient, investigating the risks and implications of cross border surrogacy for Australians. She has presented at conferences and workshops across Australia and internationally, and has lectured in postgraduate Psychology.  Narelle currently holds governance positions with the Fertility Society of Australia, Brisbane South Primary Health Network Clinical Council, and the Australia and New Zealand Infertility Counsellors’ Association, and has previously held positions with numerous professional Boards and Committees including a lengthy term with the Psychology Board of Australia.

Pregnancy after early loss

To right the story of early pregnancy loss, we must consider all aspects of the journey one that is often overlooked is pregnancy after loss. If 80% of women go onto have a healthy full-term pregnancy after experiencing a loss there are many women wearing a ‘brave face’ whilst hiding their anxiety, after all the myth perpetuates that women should be grateful for a subsequent pregnancy not anxious or scared. Pink Elephants COO Sarah-Jane will bring to life real-life case stories of women who have faced this as well as her own lived experience to provide a unique insight into this often overlooked part of pregnancy loss.

Sarah-Jane Monahas – Chief Operating Officer of The Pink Elephants Support Network.

Sarah-Jane is passionate about making a positive difference, and has an established career, including over 10 years’ leadership experience working in the not for profit sector. In particular her work at Redkite and WWF, saw her responsible for driving substantial revenue growth, inspiring teams and managing significant organisational change.

“I was devastated when my baby boy died at 22 weeks pregnant. There was very little support available, and nobody really knew how to talk about it. I understand the importance of the work of Pink Elephants. There is so much more that needs to be done to ensure that all who experience this grief and loss are well supported. I am very motivated to do all that I can to make this happen.”

Medically complicated pregnancies and end-of-life decisions. From Baby Steps to Giant Leaps; The Impact of Genomics in Pregnancy

Genetics is now playing a significant role in fetal screening and diagnosis in pregnancy. Genomic testing raises many questions and issues during pregnancy: How great are the risks of the test and how reliable is it? What does this information mean for me, for my partner and for my baby, for my family, for future generations? What is the nature of the disorder? How severe is it? What options are available? How do I choose? What medical and support services may be required? What does this information mean for social stigma, and discrimination? What resources are available? What does the future hold for health and quality of life? Together with these questions, people bring a wide variety of experiences, values and personal health beliefs about the issues raised by genomic testing to the counselling experience. This presentation explores the communication of information and the process of genetic counselling.

Pauline McGrath – Senior Genetic Counsellor, Genetic Health Queensland

Pauline is a Human Genetics Society of Australasia Certified Genetic Counsellor. Pauline established Australia’s first Metabolic Nurse Co-ordinator role at the Royal Children’s Hospital in Melbourne before moving onto Sydney where she then established the first ever Familial Cancer Clinic at the Prince of Wales Hospital.  She has worked for Queensland Health since 1995 as staff member of Genetic Health Queensland. She has been responsible for the provision of prenatal and fetal medicine genetic counselling services for Queensland since this time. She in 2013 she was awarded a Churchill Fellowship to explore the provision of counselling support for women accessing emerging pre-natal testing technologies.

The warm embrace of Hummingbird House: the role of a children’s hospice in supporting parents facing a perinatal loss

This presentation, alongside Andrea Coe, will include an overview of Hummingbird House and the work that we do followed by a case study following a baby and her family through from diagnosis to her death at 3 weeks old and beyond.

Fiona Hawthorne – General manager, Hummingbird House

Across her career, Fiona has worked as a registered nurse, academic, pre-natal counsellor, and bioethicist.

In 2007, Fiona completed her PhD and was awarded a Bob and June Prickett Churchill Fellowship in perinatal palliative care.  In 2018, Fiona was one of 3 inaugural Churchill Fellows to participate in the Global Leadership Practices Program.

Currently, Fiona is the General Manager of Hummingbird House, Queensland’s only children’s hospice, and sits on the Metro Arts Board.

Outside of work, Fiona sings loudly in her car and is trying to convince her husband and two adult children to worship her as a living goddess.

The warm embrace of Hummingbird House: the role of a children’s hospice in supporting parents facing a perinatal loss

This presentation, alongside Fiona Hawthorne, will include an overview of Hummingbird House and the work that we do followed by a case study following a baby and her family through from diagnosis to her death at 3 weeks old and beyond.

Andrea Coe is a Paediatric Palliative Care Nurse Practitioner and Hospice Lead working at Hummingbird House, Queensland’s only Children’s Hospice. With over two decades of experience in Paediatrics spanning various specialties including oncology, community and emergency care, Andrea has been a part of the holistic team at Hummingbird House Hospice since 2017.  As an NP in the hospice environment, Andrea leads the provision of expert care to children, young people and their families, with a particular interest in end of life care and care of children and their families who have had an oncology diagnosis.

Bringing stillbirth out of the shadows

Stillbirth is a devastating experience for parents and for too long has been a neglected area of research and health care practice. In recent years, research effort, parent advocacy and policy attention has seen growing momentum for a coordinated national approach to addressing this public health issue in Australia. The Centre for Research Excellence in Stillbirth (Stillbirth CRE) is committed to high-quality research to prevent stillbirth and to ensure respectful and supportive care for all families who experience this tragedy. This presentation will highlight current initiatives that are designed to achieve those goals.

Associate Professor Fran Boyle is a health services researcher at the University of Queensland Institute for Social Science Research and a Principal Investigator with the Australian Centre of Research Excellence in Stillbirth (Stillbirth CRE) where she co-leads the Care after Stillbirth program. She is committed to improving outcomes for women and families following the death of a baby through the implementation and evaluation of respectful and supportive parent-centred perinatal bereavement care in hospital and community settings.

Trauma Informed Care for Families Who Experience Stillbirth

Setting the psychological context in the frame of a rupture in the transition to parenthood, this session will use case examples to illustrate effective interdisciplinary collaborative interventions in the immediate aftermath and through the subsequent pregnancy. The presenter will integrate themes across the major theoretical schools of psychotherapy into a unified approach to diagnosis and treatment planning. The session will include journalistic photos and enacted video clips.

Dr. Deborah Rich is a licensed psychologist who has maintained a specialty practice of psychotherapy, professional training and program development for 35 years in St. Paul, Minnesota, USA. Her practice, Shoshana Center, was named after her first child, a daughter, who was stillborn full term in 1985. From 1999-2013, she was the first Pregnancy Loss Services Coordinator for a major medical system with multiple hospitals and clinics. When the entire department was disbanded, she turned her attention to building MommaCare^TM Training and licensed the curricula to Shoshana Center.  The vision of MommaCare™ is to train professionals who care for women experiencing difficult pregnancy, pregnancy loss, infertility and perinatal mood disorders. The name MommaCare™ reflects the relational approach of this model, calling up the themes of bonding, attachment, emotional well-being, growth and competence. Training modules provide medical best practice and profession-specific interventions alongside self-reflection and self-care for immersing oneself in this emotionally intense work. Dr. Rich has lectured nationally and internationally and served on the boards of several prominent organizations in the field.

Your Host – Dr Bronwyn Leigh

Bronwyn is delighted to host this important conference, bringing together multidisciplinary professionals to explore integrated, collaborative care for perinatal loss  – and to bring the many facets of unseen grief related to perinatal loss out of the shadows.

Bronwyn is a clinical psychologist, perinatal and infant clinician and early parenting consultant.  She is Director of the Centre for Perinatal Psychology and the Perinatal Training Centre. Her interest in perinatal loss is long-standing and preceded her qualification as a psychologist, volunteering as a telephone grief counsellor to parents bereaved from pregnancy loss or neonatal death. She later held an honorary position as the national trainer in perinatal loss counselling for the Bonnie Babes Foundation, travelling Australia to train others in perinatal loss counselling.  Bronwyn co-developed a comprehensive perinatal loss training for health professionals working therapeutically with clients – Bearing the Unbearable: A Relationship-Based Training Program for Perinatal Loss