About microcephaly
Microcephaly is a neurodevelopmental disorder – that is, a problem with the way the brain 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 conditions like Down syndrome or Cri du Chat syndrome.
Microcephaly is a lifelong rare condition. It occurs in approximately 1 in 10,000 births.
Causes of microcephaly
Microcephaly can be caused by changes in genes. Sometimes these genetic changes are inherited from parents, and sometimes the genetic changes happen without any family history.
Other things can cause microcephaly during pregnancy or birth. These things include:
- certain infections during pregnancy – for example, the Zika virus, rubella or chickenpox
- severe malnutrition
- exposure to certain toxic chemicals or a lot of alcohol or drug use during pregnancy
- lack of 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 weight gain and growth
- difficulty with movement and balance
- loose or tight muscles
- short stature
- distorted facial features.
Cognitive signs
Children and teenagers with microcephaly often have:
- delayed development
- delayed speech
- learning difficulties
- intellectual disability
- difficulties with coordination and balance.
Behaviour signs
Children and teenagers with microcephaly might have behaviour like hyperactivity, agitation and aggression. They might also have poor appetites.
Medical concerns linked with microcephaly
Children and teenagers with microcephaly can have other medical concerns including:
- seizures
- vision problems
- hearing problems
- joint deformities.
Diagnosis and testing for microcephaly
Sometimes health professionals diagnose microcephaly while a baby is still in the womb. They do this by looking at 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, monitoring head growth and looking for signs and symptoms like those listed above. Health professionals might also use X-rays, CT scans and MRI scans.
If your child has microcephaly, health professionals might recommend genetic testing for you and your child. This can help them work out whether your child’s condition is caused by genetic changes or something else.
Early intervention services for children with microcephaly
If your child has 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. For example, you child might have:
- physical therapy to improve their movement and coordination
- speech therapy to help with language and swallowing
- occupational therapy to help with daily activities.
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 and other carers 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 occupational therapists, paediatricians, physiotherapists and speech pathologists.
Working in partnership with your child’s professionals is very important. 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, you might be able to get support from the National Disability Insurance Scheme (NDIS). The NDIS can help you get services and support in your community. The NDIS might also fund things like early intervention therapies or one-off items like wheelchairs.
Looking after yourself and your family
It’s important to look after yourself physically, mentally and emotionally. 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. Your GP is there to give you and your child ongoing care and support.
A genetic counsellor might be able to help you understand how the change in your child’s genes happened. They can also help you learn about the condition and adapt to having a genetic condition in your family.
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.