Advice for family and friends following news of a congenital anomaly

Congenital anomaly

When a family member of friend has received unexpected news of a congenital anomaly it may be hard to know what to say. For many expectant parents, being available and showing that you care can be more helpful than any words.

Understanding what is happening and how you can help

Being told unexpected news often leads to more tests and follow up. There is lots of waiting and monitoring. Sometimes the diagnosis or information can change as the pregnancy continues. Many expectant parents have described the questions from family and friends to be difficult as they may not yet know the answers.

“I didn’t tell my family because I didn’t want to face all the questions, I mean, I didn’t know the answers”

Focus on the parent’s needs

While you would understandably be curious about the diagnosis and what it means, it may be more helpful to focus on the parents and their needs. Check in and ask how they are coping with the news or if there is some way that you can support them.

Create space for them

Create space for parents to feel comfortable to share their emotions. Shock, distress and anxiety are all very common responses to hearing unexpected news.

“My friend kept saying it will all be fine and to stop worrying, it made me feel that I had to hide so I stopped seeing anyone”

Provide practical support

The roller coaster of thoughts and emotions can be overwhelming for expectant parents. This can mean that every day things, like self-care can become difficult.

Practical support at times time can be very helpful. Some suggestions of practical support include:

  • Drop off some cooked meals for the fridge or freezer
  • Offer to drive parents to appointments (but be aware they may or may not want you to join them in the appointment)
  • Help around the house, clean or mow the grass
  • Run errands
  • Care for other children or pets
  • Be a distraction from the roller coaster

Some expectant parents may want to talk lots about what is happening, while others may appreciate your company but not want to talk about their baby.

“I know I just keep repeating the same things, but Mum was so great, she listened and when I didn’t want to talk, it was just good to be distracted by other things”.

Look after yourself

It is also important to check in with yourself. Supporting a friend or family member after they have been given the unexpected news of a congenital anomaly can be very hard and you may feel helpless or distressed. In order for you to cope, and then to be a support for your loved one, you may need to reach out for your own support. This time can be very private for the parents, therefore if you need to talk it may be best to speak with a counsellor, someone on a help line or your own health care providers.

To be the best support for your friend or family, you need to care for yourself too.