how we can help
We are here to help families at any stage of the Congenital Diaphragmatic Hernia (CDH) journey.
Our private online peer-support groups are accessible through Facebook. These groups allow families to openly share their Congenital Diaphragmatic Hernia (CDH) experiences. To join, contact us by email or send us a message on Facebook.
Facebook support groups
Each of the below Facebook groups is a private support group run by CDH Australia. Click on the group to request to join.
CDH Australia Private Facebook Support Group
Open to all Australian families affected by CDH with focus on supporting expectant parents.
Raising CDHers
For Australian families who are raising a child born with a diaphragmatic hernia.
Bereaved Families
For Australian families who have lost a child to CDH.
Rainbow Babies
For bereaved parents with children born after their CDH experience.
Adult Survivors
For adults who were born with a diaphragmatic hernia.
Please note, the information shared in the CDH Australia online Facebook support groups are not meant to replace proper medical advice. CDH Australia does not encourage or discourage any medical treatments or procedures; our purpose is to educate families and medical care providers so that they can make the best decisions for the patient. The opinions aired by contributors on the online support groups are their personal views and are not the views of CDH Australia, or CDHA Australia members or staff.
Any experience with Congenital Diaphragmatic Hernia (CDH) can be challenging and stressful for parents, extended family members, and friends. It is important to reach out and access support for your mental health and wellbeing when you need it.
Peer support
The CDH community in Australia is very active and supportive. The importance and benefit of feeling connected to others is well documented. Being connected and sharing experiences promotes good mental health. Our online peer-support groups are a great place to find information, share your story and connect with others who have navigated the CDH journey.
Social Workers
Ask your hospital to connect you with their Social Worker Team who are a wealth of knowledge when it comes to accessing information, financial support, mental health, and professional services in your local area.
Mental health and wellbeing resources
Links to Australian organisations with information and support for the mental health of you and your family.
Perinatal support
PANDA – Perinatal Anxiety & Depression Australia supports the mental health of parents and families during pregnancy and in their first year of parenthood. PANDA National Helpline Phone 1300 726 306 Available Mon to Fri, 9am – 7.30pm AEST/AEDT
Gidget Foundation Australia supports the emotional wellbeing of expectant and new parents to ensure they receive timely, appropriate and specialist care.
General support
Lifeline provides compassionate support for people in crisis. No judgement. No conditions. No agenda. Just a human connection to help people get through their darkest moments.
Beyond Blue 24/7 mental health support. Information and support to help everyone in Australia achieve their best mental health.
Head to Health An innovative website that can help you find free and low-cost, trusted online and phone mental health resources.
MindSpot Clinic An online and telephone clinic providing free assessment and treatment services for Australian adults with anxiety or depression.
Support for carers
Carers Australia Short-term counselling and emotional and psychological support services for carers and their families in each state and territory.
SANE Australia Information about mental illness, treatments, where to go for support and help for carers.
Support for children and young people
Headspace Free online and telephone service that supports young people aged between 12 and 25 and their families going through a tough time.
Kids Helpline A free, private and confidential, telephone and online counselling service specifically for young people aged between 5 and 25.
Support for men
MensLine Australia A telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective way.
Support for families
Relationships Australia A provider of relationship support services for individuals, families and communities.
Support for multicultural families
Embrace Multicultural Mental Health A national platform for multicultural communities and Australian mental health services to access resources, services and information in a culturally accessible format.
Grief and loss support
Unfortunately, not all babies and children diagnosed with this condition survive, and grief and loss can be a very difficult part of a family’s CDH journey. Visit our page on CDH Journey and Diagnosis for support and information.
CRISIS SUPPORT
Lifeline services are available for all Australians experiencing emotional distress with access to free 24/7 crisis support and suicide prevention services. If you, or someone you know, is experiencing emotional distress and would like to access immediate support, contact Lifeline.
Lifeline phone support
Phone 13 11 14 Australia’s largest crisis support line. Anyone in Australia can speak to a trained Crisis Supporter over the phone, any time of the day or night 24 hours / 7 days.
Lifeline Text
Text 0477 13 11 14 Australia’s first SMS-based Crisis Support service, any person in Australia can receive support from a Crisis Supporter by text message, any time of the day or night 24 hours / 7 days.
Lifeline Online Chat
The online chat service is available for people who prefer to type than talk. Any person in Australia can chat with a Crisis Supporter through the Lifeline Australia website, any time of the day or night 24 hours / 7 days.
Professional counselling
Discuss how you are feeling with your GP and ask about The Better Access initiative which gives Medicare rebates to eligible people, so they can access the mental health services they need. Support is available from eligible GPs and other medical practitioners, psychologists, social workers and occupational therapists. Eligible people can receive up to 10 individual and up to 10 group allied mental health services each year. Ask your GP for more information. You can also visit health.gov.au
Family and friends
If your family would like to help but they are not sure how, please refer them to our page Information for family and friends.
CDH and PTSD
Post-traumatic stress disorder (PTSD) is a set of responses that can develop in people who have been through or witnessed a traumatic event. Read our fact sheet and guidance on CDH and PTSD.
Financial support program
We understand how challenging it is to manage the unexpected costs that come with a diagnosis of Congenital Diaphragmatic Hernia.
To help relieve the pressure, we can provide limited financial support to help with essential household expenses.
This service is available to families who have recently received a CDH diagnosis for their child.
To find out more, please contact us by email hello@cdh.org.au
Government assistance and other organisations
There are several organisations that provide specialised support for families and children who have received a difficult medical diagnosis. Government support is also available to some families. The organisations listed below are not part of the CDH Australia network; any queries will need to be directed to the organisations directly.
Travel and accommodation assistance
If you or your child need to travel long distances for medical treatment, you may be eligible for state government financial support. See the below links.
- NSW: Travel Assistance (IPTAAS)
- ACT: Interstate patient travel assistance (IPTAS)
- QLD: Patient Travel Subsidy Scheme (PTSS)
- VIC: Patient Transport Assistance Scheme (VPTAS)
- TAS: Patient Travel Assistance Scheme (PTAS)
- SA: Patient Assistance Transport Scheme (PATS)
- WA: Patient Assisted Travel Scheme (PATS)
- NT: Patient Assistance Travel Scheme (PATS)
Information for carers
- Miracle Babies provides a detailed outline of parental payments and allowances.
- Services Australia: Having a Baby provides detailed tools and resources for financial assistance and payments.
- Department of Social Services: Supporting Carers provides information and resources for carers.
- NDIS: for families and carers Information about services dedicated to help you in your role as a carer.
- Services Australia: Carer Payment provides income support for carers to someone who has a severe disability or illness.
For parents who have lost a child to CDH
- Services Australia: Bereavement explains what help is available if your child has passed away.
- Services Australia may be able to provide support if you recently had a baby who was stillborn.
Our care packages are available as a free service for families with a child diagnosed with Congenital Diaphragmatic Hernia (CDH). To arrange for a care package to be sent to you, or a family member, please email hello@cdh.org.au
Care package for parents who have recently received a CDH diagnosis for their baby
Variety of themed gift items to provide comfort to parents during pregnancy or during their hospital stay.
Care package for parents who have lost their darling baby to CDH
Willow Tree figurine, book, or candle
We like to send this care package to parents a little while after a baby passes, this is because we often find friends and family will rally around parents for the first few weeks and months. For parents dealing with bereavement, we think it’s important to send a gift at this later stage to say that they are not alone in their journey, and that their precious baby is still being remembered. For any parents who would like to receive this care package earlier or later, we are always happy to do this. Family or friends are also welcome to coordinate this care package too.
If you are pregnant, or have a baby with Congenital Diaphragmatic Hernia (CDH) it is likely you will be required to have your child at a hospital that has the resources and doctors who are able to deal with this condition.
Below is a list of hospitals and medical institutions within Australia that are adept at dealing with CDH.
Australian Capital Territory (ACT)
Canberra Hospital – Centenary Hospital for Women and Children
New South Wales (NSW)
Sydney’s Children’s Hospital (Westmead and Randwick)
SCH Congenital Diaphragmatic Hernia (CDH) Clinic
Queensland (QLD)
Royal Brisbane and Women’s Hospital
South Australia (SA)
Women’s and Children’s Hospital
Victoria (VIC)
Royal Children’s Hospital (RCH)
Western Australia (WA)
Princess Margaret Hospital for Children
Research institutes
