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. 

Ways we can support you through your grief

 

  • Contact Us: Contact us directly via email for support.

 

 

  • 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.

Creating memories for your baby

 

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

 

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

 

  • 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.

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 organisation which provide dedicated support for grief and loss.

 

  • Sands
    Sands is a volunteer-based organisation that provides individualised care from one bereaved parent to another.

 

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

 

  • 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.

 

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

Professional counselling

 

Discuss how you are feeling with your GP. The Better Access initiative 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. For more information, visit health.gov.au

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

Information for family and friends 

 

Visit our Information for family and friends page, or see 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

Useful resources

 

Watch our webinar: What is grief?

Download: CDH and PTSD

Contact Support Services

Our Support Services team can add you to our private support groups, answer questions, discuss financial assistance, or send out a care package. Send us an email and let us know how we can help you.

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