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Section 16 – What are my options if my baby has Down's syndrome, Edwards' syndrome or Patau's syndrome or another chromosomal or genetic change found on an invasive test?

 

There will be some pregnancies where a chromosomal or genetic change is found. You will be given information and support to help you make a decision about your pregnancy. You will be able to discuss the result with an obstetrician and with a midwife who specialises in antenatal screening. You will also be able to discuss the result with someone who specialises in genetics if that is needed.

Finding out that your baby has a chromosomal or genetic change can cause a mixture of emotions, and deciding what to do is hard. There are experts who can give you information to help you decide what to do. These include fetal medicine consultants, geneticists and paediatricians. Most women want and need some support. This might come from your partner, family or friends or from the health professionals who are caring for you. If you want, your partner or a friend can come to hospital appointments with you.

There are support organisations available for families who have a child with Down’s syndrome (T21), Edwards’ syndrome (T18) or Patau’s syndrome (T13).

You can watch some family stories on living with either Down’s syndrome or Edwards’ syndrome here.

Some women will want to prepare themselves for the birth knowing that their baby has a chromosomal or genetic condition, while others may decide not to continue with the pregnancy. Whichever decision you make, the person looking after you will support you and agree a plan of care.

These are difficult decisions and you will be given time and information to help you make a decision that is right for you.

Whatever decision you make, the people caring for you will respect your wishes.

More information

You can get more information from the following.

Antenatal Results and Choices (ARC)

Helpline: 0845 077 2290 or 0207 713 7486 from a mobile

Email: info@arc-uk.org

Website:  www.arc-uk.org

Down’s Syndrome Association (DSA)

Phone: 0333 1212 300

Email: info@downs-syndrome.org.uk

Website: www.downs-syndrome.org.uk/

Support Organisation for Trisomy 13/18 (Patau’s syndrome

and Edwards’ syndrome (SOFT UK)

Email: enquiries@soft.org.uk

Website: www.soft.org.uk/