Information for family and friends

Supporting a friend or family member who has received a Congenital Diaphragmatic Hernia (CDH) diagnosis is an important role that can also be difficult to navigate. All parents and families will respond differently to a diagnosis and it is important to listen to their individual needs. Below is a guideline for some ways that you may be able to help your friend or family member during their CDH journey. 

Diagnosis and pregnancy


At this stage, parents are usually in a great deal of shock and distress. Often, they need time and space to navigate what is often a very big surprise to a diagnosis that they have likely never heard of. 

  • Allow the parents space – don’t inundate them with communication and questions. 
  • Send a thoughtful message without the pressure for them to send a response. 
  • It may be helpful to only have a couple of people in contact with the parents (perhaps their immediate family members or a close friend) who can then be in charge of dispersing information to their wider network of family and close friends.
  • Do not share their diagnosis, news or updates without their express consent or request to do so. 
  • Do not give unsolicited advice. Unless you have been in that situation, you do not know what it is like. 
  • Drop a meal off on their doorstep. 
  • Listen to them. If they decide to open up and talk to you – listen more than you speak. Allow them the space to talk about how they are feeling without trying to offer a solution or remedy.

Birth and hospital stay


This stage is exhausting and scary for any parent, let alone when your child is not with you, is in NICU and is facing surgery. Parents are understandably worried for their baby and may also have other children or responsibilities they need to take care of. As well as the tips supplied in Diagnosis and Pregnancy, you could: 

  • Offer to help take care of any other children they have.
  • Offer to walk their dog or take their pets.
  • Prepare food that is easy for them to eat on the run (e.g. individual slices of banana bread that parents can freeze, eat in the car on the way to the hospital, or can put in their bag to eat while visiting their baby). 
  • Buy a children’s book for them to read to their baby in hospital. 

Once at home with baby


Going home with their baby is an exciting, but also daunting time for parents with a CDH child. Some parents may require space for themselves to settle into their new lives, and some may want visitors and people to meet their child. Remember each family is different and to respect that the parents are still navigating a new world.

  • Any newborn is more susceptible to illness, but this is especially true for babies who have spent time in special care. Respect that parents will be concerned about the health of their baby. Even though the baby is well enough to be discharged from hospital, they may not feel comfortable having visitors. Wait to be asked to come and visit. 
  • If visiting the baby, make sure you are healthy and have not been around anyone who is unwell for the last two weeks. Wash or sanitise your hands before handling the baby. Ensure you have had any necessary vaccinations. 
  • Listen to the parents and their journey and concerns if they choose to share this information with you. 
  • Do not minimise what the family have gone through or expect that they will be fine. They would have faced much stress, anxiety and trauma. 
  • Bring a meal for the family – cooking is often the last thing on their mind when they are tending to a newborn. 

Grief and loss


Unfortunately, losing a baby with CDH is not uncommon. This is one of the greatest pains a parent will ever face, whether they lose their child in-utero or after the baby has been born. When a baby passes away, their parents are left living life with unimaginable pain. The support of family and friends is invaluable. Below are some ways to support your friend or family member. 

  • Acknowledge the baby and the loss. 
  • Say the baby’s name if you know it, and if the parents seem comfortable talk to them about their baby. 
  • Don’t stop talking about their baby in their future. Try to remember important dates such as the baby’s birthday or the day they passed. 
  • Listen to the parent if they choose to share their feelings with you. 
  • Keep in contact. Even if the parent doesn’t want to see you, or doesn’t always respond to your phone calls or messages, keep in contact and ensure there is no expectation for them to respond. A simple message saying ‘I’m thinking of you and sending you love’ can help show your friend/family member that you are still there for them if they need you. 

Useful resources and links


Download: Supporting bereaved parents


Your generous donation will help ensure we can continue to offer support services to parents and families who are navigating the CDH journey.