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What is microcephaly?
Microcephaly is a neurodevelopmental disorder - that is, a problem with the way the brain or nervous system grows.
Children with microcephaly have smaller than usual heads and brains. 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, but it often comes with other neurodevelopmental syndromes like Down syndrome or Cri du Chat syndrome.
Microcephaly can be caused by genetic changes. Sometimes the gene changes that cause it are inherited from parents. Sometimes the gene changes happen for the first time in the child.
Particular viruses can cause microcephaly too. For example, infection with the Zika virus in pregnancy can cause microcephaly.
And 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 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 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
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 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 other than routine appointments to measure head size. Other children might have serious speech and learning difficulties. Some might need medication for seizures.
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 the treatment and therapy options that will best support 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, and gives you funding for things like early intervention therapies or one-off items like wheelchairs.
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.
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, these siblings of children with disability need to feel that they're just as important to you - that you care about them and what they're going through. It's important to talk with them, spend time with them, and find the right support for them too.