Sometimes, routine pregnancy tests may show that your baby could have a health or developmental condition.
This information can bring up questions and a range of feelings, and many people need time to understand what it means for them and their family, and what to do next.
Your maternity care team will be able to provide you with support and information to help you and your family understand the situation and consider your choices, at your own pace.
This webpage provides additional support and information to help you and your family during this difficult time.
Your maternity care team may offer you more tests to understand if your baby has a health, developmental or genetic condition. These may include amniocentesis, chorionic villus sampling (CVS), or scans such as an ultrasound or MRI.
Amniocentesis and CVS involve taking small samples of tissue from your placenta or fluid from around your baby to check your baby's genes. Ultrasound and MRI are scans that take pictures of your baby inside the womb.
These tests can give clearer information about your baby's condition. Sometimes they may confirm a diagnosis.
Your maternity care team will guide you through what to expect and explain what support is available. This team may include specialists who have experience caring for babies, children and families affected by similar conditions.
You have the right to clear information in language you understand, to take time to make decisions, and to decide if you do not wish to have more tests. You also have the right to seek a second opinion if you wish.
Ask as many questions as you need. You may want to write them down or bring a support person to appointments.
For example, you may want to ask:
If you need to travel far for tests and appointments, you may be able to get help through the Isolated Patients Travel and Accommodation Assistance Scheme.
Genetic counselling provides information and support from qualified health professionals about genetic conditions in your family.
It offers a space to ask questions and talk through your options. Your maternity care team can help connect you with a genetic counsellor.
Genetic counsellors can:
Genetic counselling is non-directive. This means the counsellor provides information and support but does not tell you what decision to make.
It is important to learn more about your baby's condition and what it may mean for you and your family. Learning more about your baby's health or development may lead to decisions about whether to continue your pregnancy. This is a deeply personal decision. There is no right or wrong choice; only what feels right for you and your family.
Your maternity care team is there to support you and explain your options. You can find more information about your options on the Raising Children Network.
Unless there is an urgent medical concern, you can usually take time to consider your options. Ask your care team about any timeframes that apply to your situation.
Sometimes a condition is described as life-limiting or life-threatening. This means a baby may not live as long as other children. Depending on the condition, this may be during pregnancy, around the time of birth, or in early childhood.
Every condition, baby and family is different, and experiences will vary.
Perinatal palliative care focuses on comfort and quality of life. It supports babies and their families with medical care, planning and emotional support.
You can speak with a paediatric palliative care team at any time, including while you are making decisions about your pregnancy. They can answer your questions and talk through what support may be available.
You can also learn more about paediatric palliative care, including the NSW Paediatric Palliative Care Programme.
Getting unexpected news and making difficult decisions during pregnancy is difficult. You don't have to face this alone; support is available.
Your maternity care team can help you access support services that are right for you. This may include a social worker, psychologist, perinatal counsellor, genetic counsellor, GP, or another health professional.
For Aboriginal families, support may also be available through Aboriginal Health Workers or Aboriginal Medical Services.
If you would like an interpreter or translated information, ask your care team or call the Translating and Interpreting Service (TIS) on 131 450.
You can also find details of other support services and groups below.