Caring for a child with Down syndrome

Down syndrome is a genetic (chromosomal) condition that is present from conception. It happens when a baby has extra chromosome 21 material and may sometimes be called Trisomy 21. 

Down syndrome happens in families of all backgrounds. It is not caused by anything you or your partner did before or during pregnancy.

You may find out your baby has Down syndrome during pregnancy or after birth. No matter when you find out, you can ask your health team about what support is available — including early intervention, local services and peer support, if you would like this.

Learn more about Down syndrome. 

During pregnancy

Finding out that your baby may have, or has, Down syndrome can bring up many different feelings. There is no "right" way to feel. It is important to talk with your doctor and midwife about what the test results mean.

They can:

• explain what your result shows (for example, the difference between a screening result and a diagnosis)
• talk through your options and support you to make a decision that feels right for you
• help you plan your pregnancy, birth and care (including any extra checks or appointments that may be recommended)
• offer or arrange genetic counselling so you can ask questions and get clear information
• connect you with support services and peer support, including families and lived‑experience resources, if you would like this

After birth

You may find out your baby is living with Down syndrome after they are born. You will be offered a few extra health checks for your baby, to help find any health concerns early and plan the right care for your baby.

You may be offered tests for:

• the heart — to look for heart differences that are more common in babies with Down syndrome
• hearing and vision — to support early development
• overall health

This may mean you and your baby stay in hospital a little longer than usual.

Feeding your baby

Many babies living with Down syndrome can breastfeed. Some babies may need extra time and support especially if they have low muscle tone or mouth differences. This can make it harder at first to attach well, keep a good seal, or feed for long enough without getting tired. These early feeding challenges often improve as your baby grows stronger and gets more practice.

Breastfeeding is not only about milk. It can also help with comfort and bonding. Breastmilk supports your baby's immune system, and breastfeeding can help your baby practise the mouth movements used for feeding and later speech.

If breastfeeding is harder than you expected, support can make a big difference. Your midwife, maternal and child health nurse, doctor or lactation consultant can watch a feed and suggest small changes that may help — such as extra body support, different positions, or ways to help milk flow before your baby latches. If your baby is premature or has other health needs, you may be supported to express breastmilk for a period of time while your baby builds stamina.

You can also contact the Australian Breastfeeding Association for reassurance and practical tips. The National Breastfeeding Helpline is 1800 686 268.

Your doctor, midwife or lactation consultant can help you with feeding support.

You can care for your child living with Down syndrome by supporting their development and wellbeing. Every child is different and will reach milestones at their own pace. Some children may need more support than others — and your child will also have their own strengths, interests and ways of communicating.

Regular check-ups with your family doctor can help check their growth and development. Your doctor can also refer (Opens in new tab) you to a specialist for early childhood intervention.

Early childhood intervention

Early childhood intervention is support that helps your child learn and develop skills. It can begin any time after birth. Ask your health team when to start each type of support, based on your child's needs and your family's priorities.

Early intervention can help your child learn to:

• crawl
• walk
• talk
• play with other children

Therapies that may help your child include:

• physiotherapy (Opens in new tab)
• occupational therapy (Opens in new tab)
• speech therapy

Talk with your child's therapists about simple activities you can do at home to support their development through everyday routines and play.

Communication, speech and language development

You can help your child communicate by:

• talking, singing, reading and listening to music together
• playing games that involve touch and movement, such as peek-a-boo
• using clear, exaggerated facial expressions to share feelings and have fun

Ask your speech therapist about key word signing. This uses simple hand signs with spoken words to help your child understand and express themselves.

Social skills

Children living with Down syndrome learn social skills best through everyday interactions. You can help your child by:

• praising good behaviour
• giving clear, simple instructions
• role-playing how to join in and make friends
• using key word signs
• encouraging eye contact

Mobility

Encourage your child to stay active with fun activities, such as:

• climbing
• running
• bike riding
• ball games

Starting school can be difficult for any child. Children living with Down syndrome may need extra support to adjust to new routines and environments.

Talk with your child's school about what support (Opens in new tab) they can provide.

Help your child get ready for school:

• Visit the school and meet their teachers in advance.
• Talk about school in a positive way.
• Practise daily routines, such as getting dressed and packing their bag.
• Help them make friends before their first day.
• Encourage independence with simple tasks.

Your child may need extra support with learning, communication or social skills.

Teachers and support staff can adapt tasks or provide help so your child can take part in classroom and playground activities.

Raising a child living with Down syndrome can bring both joy and challenges. You may need support to manage your child's health, learning and daily care.

Support is available through health professionals, community services and Down syndrome associations. Ask your doctor (Opens in new tab), social worker (Opens in new tab) or maternal child health nurse about local services and support groups. Many families also find it helpful to connect with other parents and lived‑experience supports, alongside clinical advice.

Emotional and mental health support

If you feel worried (Opens in new tab), tired (Opens in new tab) or overwhelmed, talk with a counsellor (Opens in new tab) or psychologist (Opens in new tab). Support groups can also help families share experiences and feel less alone.

Practical and professional support

Your child's care team may include doctors, nurses (Opens in new tab), therapists and early intervention specialists. They can guide you in managing feeding, mobility, learning and communication challenges.

Family and community support

A strong support network of family, friends, community groups and service providers is important. Sharing care responsibilities, even for short breaks, may help.

Some carers (Opens in new tab) may be eligible for respite care (Opens in new tab), which gives families time to rest and recharge.

Financial support

You may be eligible for financial support. This can help you access support networks and early intervention services.

• Down Syndrome Australia (Opens in new tab) has information, support and resources for people living with Down syndrome and their families. Call their national phone number on 1300 881 935 and ask for your local organisation.
• All Means All (Opens in new tab) offers resources to help parents support their child's inclusive education.
• Children and Young People with Disability Australia (Opens in new tab) (CYDA) provides information and support for children, young people living with disability and their families.
• You can also contact the Australian Breastfeeding Association for reassurance and practical tips. The National Breastfeeding Helpline is 1800 686 268.
• Key Word Sign Australia (Opens in new tab) provides training and resources to support communication.
• Carer Gateway (Opens in new tab) offers practical, emotional and financial support for carers.
• Funding is available through the National Disability Insurance Scheme (Opens in new tab).

Languages other than English

Down Syndrome Australia (Opens in new tab) offers fact sheets and resources in languages other than English, as well as easy English versions. Topics include:

• advice for new parents with a baby living with Down syndrome (Opens in new tab)
• a guide for expectant parents (Opens in new tab)
• living independently (Opens in new tab)
• an early years guide (Opens in new tab)
• a video (Opens in new tab) for parents of children living with Down syndrome talking about the diagnosis during pregnancy
• a video (Opens in new tab) of parents of children living with Down syndrome talking about early intervention after their child's diagnosis

Parent Line (Opens in new tab) is a free telephone counselling and support service for parents and carers. It offers parenting support for parents from culturally and linguistically diverse backgrounds.

Information for Aboriginal and/or Torres Strait Islander peoples

• The National Aboriginal Community Controlled Health Organisation (NACCHO) has information on living with disability (Opens in new tab) for Aboriginal and/or Torres Strait Islander peoples.