Bring support Take a family member or friend along for emotional support and to help remember what the doctor says. Ask them to take notes for you during the appointment.

Prepare questions Prepare a list of questions as it is easy to forget in the appointment. Don’t be afraid to ask the doctor to explain things in simple terms if you don’t understand.

Ask for recommended information sources and supports It is natural to want to learn more about your child’s diagnosis but make sure you are using reliable information sources.

Make sure you know who can can contact if you have follow up questions or concerns

Stay Open-Minded Remember that a diagnosis is just one step in your child’s medical journey. Stay positive, and be open to discussing different treatment options and seeking second opinions if needed.

Use reliable sources of information. See our research tips below!

Create a support network. This might be in the form of family, friends or support groups or professionals. There will be times that you want to vent, times you want to share good news and times you just need a break. Raising a child is exhausting. Raising a child with medical or additional needs adds a whole other layer of complexity.

Don’t be afraid to ask for help – Whether that is asking to be referred to the hospital Medical Social Worker, Public Health Nurse, your GP, or friends or family – people can’t support if they don’t know you need help!

Make time for self-care. This is often really hard to prioritise. However, self-care is very important. It will give you the capacity to continue supporting your child.

One of the first places you may look is the Internet. While the Internet is a great source of information, there is also a lot of information that is out of date, unreliable or incorrect. Sometimes the information you find on the Internet may not be relevant to your child’s specific needs, even if the information talks about the same condition. Each child and condition is different.

Never treat information found on the Internet, in a book, a social media group or anywhere else as medical advice – only a medical professional can give you medical advice after consulting with you and getting details about your child’s condition.

If possible, ask a member of your healthcare team for a list of reliable and relevant websites or organisations.

Check the source of the information – who wrote the health information; is that person qualified to give this information or do they show proper references for information they got elsewhere

Always use more than one website to get balanced information and to check information.

Be careful not to believe claims or promises of miraculous cures, wonder drugs and other extreme statements, unless there is reliable proof of these claims.

Parent groups on social media such as Facebook can be a great source of support and advice based on similar experience. However it is important to remember that every child and how they are affected by a diagnosis is different.

Supports and services might be different from other children and families depending on your child’s needs or where you live. Keep this in mind when you hear about supports that other children with similar conditions have received.

As your pregnancy becomes increasingly visible, people will want to talk to you about it. You need to be prepared for how you’ll handle that. Sometimes it’s easier to keep things superficial and not get into the challenges you’re experiencing, but sometimes you might feel like you need to talk about it. You need to be prepared to deal with people’s reactions – often shock or grief.

Take all of the help available from your maternity hospital. Ask all of the questions, even the ones that seem ridiculous. They have specialised midwives and teams who look after people with a pregnancy complication and they’re there to help, listen, and support you.

It is easier said than done but try not to google too much. There are so many variables that it’s very difficult to get the answers to all of your questions. Write down your questions and ask them at your next appointment – or call the team in your maternity unit. Having said that, it can be helpful to seek out stories of babies and children who have the condition that your baby has been diagnosed with to see what life is like for them – Instagram is a good place to start as you can search the condition by hashtag.

It’s okay to grieve the loss of a “normal pregnancy”. It’s okay to feel sad and anxious for you and for what you’re losing during what’s supposed to be such a happy time.

Lean into your support network. If you have other children you’re going to need a lot of support and help if your new baby has to be admitted to the NICU or to a children’s hospital after birth.