Grief and loss

Congenital Diaphragmatic Hernia (CDH) has a 50–60% survival rate in Australia. 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. 

Pregnancy loss
Some babies diagnosed with CDH pass away in-utero.

Loss after birth
Each baby with CDH is different and it is not known how a baby will respond once they are born. Some babies cope very well outside the womb while others struggle. 

Creating memories for your baby

Below are links to organisations that help create special memories for your angel.

• Heartfelt
  A volunteer organisation of professional photographers dedicated to giving the gift of photographic memories to families who experience stillbirth or have children with serious or life-threatening illness. All services are free of charge.

• Angelgowns
  A not-for-profit charity that specialises in supplying angel gown garments to families that have sadly had a baby pass away.

Navigating the loss of your baby

The loss of a baby is a unique and painful grief. Each person will deal with their grief in their own way. Below are links to organisations which provide dedicated support for grief and loss.

• Hospital to Home by SANDS is a program operating throughout Australia, providing outreach support within three months of loss to bereaved parents who have experienced the death of a baby or infant through stillbirth (including TFMR), neonatal death or the sudden unexpected death of an infant (SUDI). Support can be provided face-to-face, by phone or videoconference and is tailored to individual needs. Parents decide how they would like to be supported.

• SANDS
  24/7 phone support – 1300 308 307 Sands is a volunteer-based organisation that provides individualised care from one bereaved parent to another. You don’t need to know what you’re going to say before you call, and you don’t need to wait until you feel more ‘together’. The person answering your call will give you all the time, space and support you need to find your voice.

• Rednose grief and loss
  Rednose have over 40 years’ experience supporting grieving individuals and families. Access their 24/7online support line or resources.

• Griefline
  Griefline provides free counselling support to anyone experiencing grief and loss.

• The Compassionate Friends Victoria
  This organisation is dedicated to supporting grieving parents, siblings and grandparents in the event of the death of a child –– of any age or from any cause.

Ways we can help:

• Private online peer-support groups: We have a private Facebook group available for bereaved parents of CDH angels. Contact us via email or direct message us on Facebook to be added to this group. 

• Care packages: Beautiful care packages are available as a free service for parents who have lost a child to CDH. Email us and we will post a care pack to you, or your family member.

• Honour your CDH angel: On our Facebook page, we honour and remember CDH angels on their date of birth and the date of their angelversary each year. The CDH community sends messages of love and comfort on these special dates. If you would like us to honour your CDH angel, please email us.

• Share your story: Your story may help another CDH family navigate their own journey. If you choose to share your story, we have a dedicated section of our website for stories of love and loss. You may also choose to simply share a photo as a tribute to your CDH angel. Please contact us by email if you’d like to honour your child in this way.

Useful resources

Watch our webinar: What is grief?

Download PTSD fact sheet: CDH and PTSD

Visit our Mental health and wellbeing page

Information for family and friends 

Visit our Information for family and friends page

Download our fact sheet: How to support grieving parents.

Your child’s medical record 

You may request a copy of your child’s hospital records through Freedom of Information (FOI). Most hospitals will have a form you can complete to send to their records department. Call your hospital or search on their website for FOI details. You are also able to obtain your child’s hospital records if your child did not survive. This information can help you process all that’s happened and can be another way to remember the short time you had with your baby.

Download: Your child’s medical history

Financial assistance

You may be eligible for a financial support payment from the Australian government if you have lost a child to CDH. For more information visit the Financial support page. 

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

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.

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