What is microcephaly?
Microcephaly is a neurodevelopmental disorder – that is, a problem with the way the brain or nervous system grows.
In the case of microcephaly, the disorder results in a smaller than usual head and brain. It often causes 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, but it often comes with other neurodevelopmental syndromes like Down syndrome or Cri du Chat syndrome.
Microcephaly most often happens because of genetic changes in the fetus in the early months of pregnancy. Particular viruses can cause it too. If a pregnant woman comes into contact with certain toxic chemicals or uses lots of alcohol or drugs during pregnancy, this can also damage the fetus’s brain while it’s developing.
Microcephaly occurs in approximately 1 in 25 000 children.
Signs and symptoms of microcephaly
Most babies born with microcephaly have a head that’s smaller than usual and that doesn’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 small stature.
Children with microcephaly often have:
- delayed development
- delayed speech
- intellectual disability
- difficulties with coordination and balance.
Children with microcephaly might have behaviour like hyperactivity, agitation and aggression.
Medical concerns linked with microcephaly
Children with microcephaly can have other medical conditions including seizures.
Diagnosis and testing for microcephaly
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 normal head size isn’t obvious earlier in pregnancy.
After birth, or if a baby develops microcephaly later, health professionals diagnose it by measuring the baby’s head and monitoring it as he grows. They might also use X-rays and MRI scans.
Early intervention services for children with microcephaly
There’s no cure for microcephaly. But if your child has microcephaly, early childhood intervention services can help improve her quality of life.
Some children with microcephaly won’t need any treatment apart from routine appointments to measure head size. Other children might have serious speech and learning difficulties. Some might need medication for seizures or mental health problems.
If your child has microcephaly, he might see several health professionals as part of early intervention. These professionals include paediatricians, speech pathologists, occupational therapists and physiotherapists.
Together, you and your team can choose treatment and therapy options to best help your child.
Services and support for children with microcephaly
Learning as much as possible from your specialists will help. It’s OK to ask lots of questions.
Many services and supports can help your child with microcephaly achieve her potential. But finding your way through the disability services system can be tricky. Our Disability Services Pathfinder can help.
If you live in a National Disability Insurance Scheme (NDIS) trial area and your child has a confirmed diagnosis of microcephaly, your child can get support under the NDIS. The NDIS helps you get services and support in your community, and gives you funding for things like early intervention therapies or one-off items like wheelchairs.
If you don’t live in one of the NDIS trial areas, your child can get funding under the Better Start for Children with Disability initiative. If your child is eligible for the NDIS, he’ll be moved over when it becomes available in your area. Read our NDIS and Better Start FAQs for more information.
Looking after yourself and your family
If your child has microcephaly, it’s easy to get caught up in looking after her. But it’s important to look after your own wellbeing too. If you’re physically and mentally well, you’ll be better able to care for your child.
If you need support, a good place to start is with your GP and genetic counsellor. You can also get support from organisations like Genetic Alliance Australia.
Looking after siblings
Siblings of children with disability have good times and not so good times, just like everyone else. It’s important to find the right support for them too.