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Craniosynostosis is a rare condition where a baby's skull does not grow properly and their head becomes an unusual shape. It's usually treated with surgery.
Babies' heads come in all shapes and sizes. It's normal for their head to be a slightly unusual shape. It will often get better as they grow.
But your baby may have a problem like craniosynostosis if:
If the problem is mild, it may not be noticeable until your child is older.
Rarely, your child may have symptoms such as:
Your baby or child has symptoms of craniosynostosis and:
You should also see a GP if you're concerned about the development of your child’s head in terms of its shape and size.
The GP will examine your child's head. They may also take some measurements to see if it's an unusual size for your child's age.
If they think your child could have craniosynostosis, they may refer them to a specialist centre for more tests, like X-rays or scans.
These tests should help determine what type of craniosynostosis your child has, and what type of treatment they'll need as they grow older.
| Type | What it means |
|---|---|
|
Type
Sagittal craniosynostosis |
What it means
Affects the top of the head, making it long and narrow, and can also cause a delay in speech. |
|
Type
Coronal craniosynostosis |
What it means
Affects the side of the head, making the forehead look flattened on one side (unicoronal) or both sides (bicoronal). |
|
Type
Metopic craniosynostosis |
What it means
Affects the forehead, making it look pointy or triangular. |
|
Type
Lambdoid craniosynostosis |
What it means
Affects the back of the head, making it flattened on 1 side. |
|
Type
Syndromic synostosis (complex) craniosynostosis |
What it means
Affects more than 1 part of the head and can also affect other parts of the body. It's caused by an underlying genetic condition. There are different types which can also cause problems with hearing, sight, breathing and learning. |
There are 4 specialist NHS centres for craniosynostosis:
If your baby has craniosynostosis they will have regular check-ups to monitor it.
Treatment usually involves surgery. The type of surgery will depend on:
Mild cases may just be monitored and not need surgery.
Surgery usually involves making a cut across the top of your child’s head, removing and reshaping the affected parts of their skull, and then fixing them back in place.
It's done under general anaesthetic (they will be asleep). Your child may need to stay in hospital for up to a week afterwards.
The care team looking after your baby will talk to you about the options.
Depending on their symptoms, they may also need:
Many children do not have any lasting health problems from craniosynostosis. They may have a scar across the top of their head if they had surgery, but this will be hidden by their hair.
Your child will have regular check-ups to see how they're doing. These may be every few weeks at first but will become less frequent as they get older.
If your child has certain types of craniosynostosis, surgery cannot always fully correct the shape of their head and they may need ongoing care.
Certain types of craniosynostosis can lead to long-term conditions like learning difficulties, hearing loss and problems with sight, such as having a lazy eye.
