What is Congenital Diaphragmatic Hernia

Download: What is CDH?

Expecting a baby with Congenital Diaphragmatic Hernia- Booklet

Download booklet: Expecting a baby with CDH

Medical terminology

Download: Medical terminology

Preparing your home for your CDH baby

Download: Preparing your home for baby

Newborn Intensive Care Unit (NICU)

Download: NICU tips

Feeding CDH babies

Download: Feeding your child with CDH

Your child’s medical history

Download: Your child’s medical history

Schools information sheet

Download: Information sheet for school and sport days

Post Traumatic Stress Disorder and Congenital Diaphragmatic Hernia

Download: PTSD and CDH

Supporting bereaved families

Download: How to support bereaved parents

Covid19 and Congenital Diaphragmatic Hernia

Download: Covid19 and CDH

You will have a number of appointments after your Congenital Diaphragmatic Hernia (CDH) diagnosis. It is often difficult to know or to remember what to ask medical professionals during these appointments. To assist you, we have created question sheets, which also feature advice from parents who have previously been through this journey.

Pregnancy

Download: Questions and advice during pregnancy

Diagnosis

Download: Questions and advice at diagnosis

Specific questions for your hospital

Download: Questions and advice for the hospital

Birth and labour

Download: Questions and advice for birth and labour

Post-birth and NICU

Download: Questions and advice for post-birth and NICU

Discharge and going home

Download: Questions and advice for discharge and going home

Children with CDH

Download: Questions and advice for raising children with CDH

Check out our videos related to Congenital Diaphragmatic Hernia (CDH) via our YouTube channel.

What is CDH?

CDH research update

Vasopressin: How does it help babies with CDH?

What is grief?

Our ambassadors

CDH Sunflower Sunday

Christmas videos

First cuddle

Sometimes a hug will do

We hope this page of useful links is of assistance to you. If you have a link that you think should be added to the page, please email us.

Financial support

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.

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.

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)

Mental health and wellbeing resources

Links to Australian organisations with information and support for the mental health of you and your family.

Crisis support If you, or someone you know, is experiencing emotional distress and would like to access immediate support, please connect with Lifeline.

Beyond Blue 24/7 mental health support. Information and support to help everyone in Australia achieve their best mental health.

Carers Australia Short-term counselling and emotional and psychological support services for carers and their families in each state and territory.

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.

health.gov.au Access to professional counselling. Eligible people can receive up to 10 individual and up to 10 group allied mental health services each year.

Head to Health An innovative website that can help you find free and low-cost, trusted online and phone mental health resources.

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.

MensLine Australia A telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective way.

MindSpot Clinic An online and telephone clinic providing free assessment and treatment services for Australian adults with anxiety or depression.

Relationships Australia A provider of relationship support services for individuals, families and communities.

SANE Australia Information about mental illness, treatments, where to go for support and help for carers.

For families who have lost a child to CDH

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.

Sands provides individualised care from one bereaved parent to another.

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

The Compassionate Friends Victoria dedicated to supporting grieving parents, siblings and grandparents in the event of the death of a child.

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

Hospitals and medical institutions

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 

Royal Hospital For Women

Queensland (QLD)

Royal Brisbane and Women’s Hospital

Mater Mother’s Hospital

The Townsville Hospital

South Australia (SA) 

Women’s and Children’s Hospital

Victoria (VIC) 

Royal Children’s Hospital (RCH)

The Royal Women’s Hospital

Monash Children’s Hospital

Western Australia (WA) 

Princess Margaret Hospital for Children

King Edward Memorial Hospital

Research institutes

Children’s Medical Research Institute

Murdoch Childrens Research Institute