About microcephaly

Microcephaly is a neurodevelopmental disorder – that is, a problem with the way the brain or nervous system grows and develops.

Children with microcephaly have smaller heads and brains than other children of the same age. They also often have intellectual disability and neurological issues like seizures, problems with muscle stiffness and control, or problems with balance.

Babies can be born with microcephaly, or it can develop in the first few years of life. It can happen on its own. Sometimes it comes with other neurodevelopmental syndromes like Down syndrome or Cri du Chat syndrome.

Microcephaly is a rare condition. It occurs in approximately 1 in 10 000 children.

Causes of microcephaly

Microcephaly can be caused by genetic changes. Sometimes the gene changes that cause it are inherited from parents. Sometimes the gene changes happen without any family history.

Other things can cause microcephaly during pregnancy or birth. These things include:

• certain infections during pregnancy – for example, infection with the Zika virus, rubella or chickenpox
• severe malnutrition
• exposure to certain toxic chemicals or a lot of alcohol or drug use during pregnancy
• not enough oxygen to the baby’s brain during pregnancy or birth
• craniosynostosis.

Signs and symptoms of microcephaly

Physical characteristics
Most babies born with microcephaly have heads that are smaller than usual and that don’t grow with them. Some children with microcephaly have heads that grow but that stay below the typical growth curves.

Other physical characteristics might include poor growth in general and short stature.

Cognitive signs
Children with microcephaly often have:

• delayed development
• delayed speech
• intellectual disability
• difficulties with coordination and balance.

Behaviour signs
Children with microcephaly might have behaviour like hyperactivity, agitation and aggression. They might also have a poor appetite.

Medical concerns linked with microcephaly
Children with microcephaly can have other medical conditions including seizures.

Diagnosis and testing for microcephaly

Sometimes health professionals can diagnose microcephaly while a baby is still in the womb. They do this using an ultrasound scan. An ultrasound diagnosis usually happens in the third trimester because smaller than expected head size isn’t obvious earlier in pregnancy.

After birth, or if a child develops microcephaly later, health professionals usually diagnose it by measuring the child’s head and monitoring head growth. They might also use X-rays and MRI scans.

Health professionals might also recommend genetic testing to diagnose microcephaly.

Early intervention services for children with microcephaly

Early intervention is the best way to support your child’s development. Early intervention includes therapies, education and other supports that will help your child reach their full potential.

Early intervention should also include helping you learn how to spend time with your child in ways that support their development. Children learn the most from the people who care for them and with whom they spend most of their time, so everyday play and communication with you can help your child a lot.

You and your child will probably work with many health and other professionals as part of your child’s early intervention. These professionals include paediatricians, speech pathologists, occupational therapists and physiotherapists.

It’s good to see yourself as working in partnership with your child’s professionals. When you combine your deep knowledge of your child with the professionals’ expertise, you’re more likely to get the best outcomes for your child.

Financial support for children with microcephaly

If your child has a confirmed diagnosis of microcephaly, your child can get support under the National Disability Insurance Scheme (NDIS). The NDIS helps you get services and support in your community. It also gives you funding for things like early intervention therapies or one-off items like wheelchairs.

Looking after yourself and your family

Although it’s easy to get caught up in looking after your child with microcephaly, it’s important to look after your own wellbeing too. If you take care of yourself, you’ll be better able to care for your child.

If you need support, you could start by talking with your GP or a genetic counsellor. You can also get support from organisations like Genetic Alliance Australia and Genetic Support Network of Victoria.

Talking to other parents can also be a great way to get support. You can connect with other parents in similar situations by joining a face-to-face or an online support group.

If you have other children, they might have a range of feelings about having a sibling with disability. They need to feel that they’re just as important to you as your child with disability – that you care about them and what they’re going through. It’s important to talk with your other children, spend time with them, and find the right sibling support for them.