When your unborn baby has chromosomal anomalies or disability

When your unborn baby is diagnosed with a chromosomal anomaly or disability: your feelings

If you find out your unborn baby has a chromosomal anomaly or other condition that will cause disability, it can be a very difficult time, especially if you’re not prepared for the news.

It’s natural to feel a range of emotions when you get an antenatal diagnosis of disability. You might feel shock, anger, sadness, guilt, anxiety, stress or shame. You might feel isolated and disconnected from family and friends. Or you might not feel much at all.

You might also worry that you’ve done something to cause your baby’s condition or feel jealous of others with a healthy pregnancy and baby.

And your feelings might depend on your baby’s anomaly or condition and how severe the disability is likely to be.

There’s no right or wrong way to feel. Everyone has their own way of reacting to the news.

Seeing a genetic counsellor or talking to your doctor or midwife can help you work through your feelings. It can also help you decide what to do next.

Finding out more about the chromosomal anomaly or disability

Finding out more about your unborn baby’s condition or disability can help you with planning and decision-making for the rest of the pregnancy.

You can talk to your doctor, midwife or genetic counsellor, who might refer you to specialised health professionals. For example, you might speak to a paediatrician about your baby’s condition or disability. Or you might go to a hospital that has a team of doctors and midwives who specialise in supporting parents after an antenatal diagnosis of chromosomal anomalies or conditions.

Getting answers to the following questions can help you make an informed decision about what you want to do for the rest of the pregnancy and after birth.

Questions about your baby’s chromosomal anomaly or condition

What anomaly or condition does my baby have?
Why does my baby have this anomaly or condition?
Would we know more if we waited a few more weeks or did any other tests?
Is my baby suffering now?
Is the condition life-limiting for my baby during pregnancy or after birth? If so, how long do children with this anomaly or condition usually live?
What’s the chance I’ll have another child with the same anomaly or condition?

Questions about how the chromosomal anomaly or condition might affect your child

What physical problems might my child have?
Will my child be able to walk and/or talk?
What will my child’s health problems be?
Will my child have learning difficulties or intellectual disability?
Will my baby be able to come home with me from hospital after the birth?
How sure can you be about the problems my baby will have?

Questions about support and services for children with disability

Do children with this anomaly or condition need support services or other help? What’s available?
What does it take to raise a child with this anomaly or condition?
Will my child be able to go to mainstream school?
When my child grows up, will they be able to live independently?
Are there support groups for parents of children with this anomaly or condition?

Health professionals might not be able to answer all your questions in as much detail as you feel you need. It’s not possible to know exactly how your baby will grow and develop after birth. You could contact a support group for your child’s condition or speak to families raising children with the same condition to hear about what life might be like.

Options after an antenatal diagnosis of a chromosomal anomaly or disability

You have 2 options after an antenatal diagnosis of a chromosomal anomaly or disability:

Continue with the pregnancy.
Terminate the pregnancy – this depends on the stage of your pregnancy and the laws in your state or territory.

Continuing the pregnancy
If you decide to continue the pregnancy, you might be able to continue with routine care from your doctor or midwife, or you might need to go to a special clinic.

Large maternity hospitals often have special clinics with health professionals who are trained to:

plan your care for the rest of pregnancy, including care for your emotional and mental health
help you decide where you might give birth – instead of your local maternity hospital, it might need to be at a large maternity hospital with special facilities
prepare you for what might happen during labour, birth and after birth – for example, whether your baby is expected to survive after birth and whether your baby might need specialised care.

The staff will support you through this period, until you can get support services in the broader community, if that’s what you need and want.

Terminating the pregnancy
If you choose to terminate the pregnancy, the right health professionals will ensure this happens with sensitivity and care.

The termination method will depend on the stage of pregnancy:

Early in pregnancy, termination is performed under general anaesthetic, and you usually go home the same day. This type of termination is usually done up to around 14 weeks of pregnancy.
Later in pregnancy, termination involves induction of labour and giving birth in hospital. This might take 1-3 days, and your baby might be born dead or might live briefly after birth. If your labour has been induced, you’ll be able to spend some time with your baby after birth and create memories like photographs or footprints.

Following a termination, you’ll see a doctor for follow-up care to check your physical and emotional recovery.

The laws about terminating a pregnancy vary across different states and territories in Australia. All states and territories have laws prohibiting unlawful terminations. But they have different interpretations of and legislation about when a termination is lawful. Speak to your health professional to find out more.

Continuing or terminating a pregnancy: things to consider

After an antenatal diagnosis of a chromosomal anomaly or another condition, some people choose to terminate a pregnancy, and others choose to continue it. There’s no right or wrong – it’s your choice.

But it can be a difficult choice, which you might have to make quickly. Talking with your health professionals, and your partner if you have one, can help you decide what to do.

Here are some questions to ask health professionals, especially genetic counsellors:

How much time do I have to make a decision?
Can further testing give me more information?
If we decide to continue the pregnancy, what care will the baby and I need in the rest of the pregnancy?
If we decide to terminate the pregnancy, how, where and when can that happen?

Here are some questions to ask yourself and talk about with your partner, if you have one:

How do I/we feel about terminating the pregnancy?
How do I/we feel about continuing the pregnancy?
How do I/we feel about giving birth to a child with disability?
Do my partner and I have the same thoughts and feelings about this situation? If we don’t, what do we do?
What support can I/we expect from family and friends for our decision?

You and your partner need to be clear about your thoughts and feelings and the long-term outcomes of your final decision to continue or terminate your pregnancy after an antenatal diagnosis of disability.

Grief after making a decision about an antenatal diagnosis of disability

Whatever your decision about the pregnancy, you might have many different feelings, including confusion, isolation, self-blame and grief.

If you choose to continue the pregnancy, you might grieve for the loss of your expectations for your baby. If you terminate your pregnancy, you might grieve for your baby. In both situations, you might grieve for yourself too.

Everyone grieves in individual ways, and grief can affect you physically, emotionally, psychologically and spiritually. You might wonder how long your feelings will go on, and whether it’s OK to grieve. It is OK for you to grieve, and there’s no right or wrong way to do it.

It’s OK to ask for help with your feelings. You can get support from a grief counsellor, genetic counsellor, social worker, hospital pastoral care worker, GP and family and friends.