When your unborn baby has chromosomal abnormalities or disability

When your unborn baby has chromosomal abnormalities or disability

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When your unborn baby is diagnosed with abnormality or disability: your feelings

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

It's normal 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 abnormality 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 midwife, GP or obstetrician can help you work through your feelings. It can also help you decide what to do next.

When I was told my baby had a disability, I was shocked. I cried and cried. I felt so sad. What helped us cope was the fact that we had a doctor who gave us the information we needed to make decisions. My partner and I made all the decisions together, and our families were there for us all the way.
- Ellen, mother of two children

Finding out more about the abnormality 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 GP, obstetrician, midwife or genetic counsellor. Talking to a paediatrician can also help, because paediatricians are likely to know about your baby's condition or disability.

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.

Questions about your baby's abnormality or condition

  • What abnormality or condition does my baby have?
  • Why does my baby have this abnormality 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 abnormality or condition usually live?
  • What's the chance I'll have another child with the same abnormality or condition?

Questions about how the abnormality 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 abnormality or condition need support services or other help? What's available?
  • What does it take to raise a child with this abnormality or condition?
  • Will my child be able to go to mainstream school?
  • When my child grows up, will she be able to live independently?
  • Are there support groups for parents of children with this abnormality or condition?

Health professionals might not be able to answer all your questions in as much detail as you feel you need. It's often 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 abnormality or disability

You have two options after an antenatal diagnosis of abnormality or disability:

  • continue with the pregnancy
  • terminate the pregnancy if the pregnancy is no further along than 24-28 weeks.

Continuing the pregnancy
If you decide to continue the pregnancy, you might be able to continue with routine care from your GP 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 at or after birth - for example, whether your baby will survive birth or whether you'll be going home with a baby with disability.

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 labour being induced and you 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 an obstetrician or GP 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 chromosomal abnormalities or other conditions, 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 consequences of your final decision to continue or terminate your pregnancy after an antenatal diagnosis of disability.

Grief after 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 also 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 sometimes your family and friends.