Craniosynostosis

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.

Check if your baby has craniosynostosis

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:

• their head is long and narrow, like a rugby ball
• their forehead is pointy or triangular
• one side of their head is flattened or bulging out
• the soft spot on the top of their head (fontanelle) disappears before they're 1 year old

If the problem is mild, it may not be noticeable until your child is older.

Rarely, your child may have symptoms such as:

• learning difficulties
• sight or hearing loss
• breathing problems, like not being able to breathe through their mouth
• dental problems, such as missing or crowded teeth

What happens at your GP appointment

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.

Types of craniosynostosis

Types of craniosynostosis and their effects

Type	What it means
Sagittal craniosynostosis	Affects the top of the head, making it long and narrow, and can also cause a delay in speech.
Coronal craniosynostosis	Affects the side of the head, making the forehead look flattened on one side (unicoronal) or both sides (bicoronal).
Metopic craniosynostosis	Affects the forehead, making it look pointy or triangular.
Lambdoid craniosynostosis	Affects the back of the head, making it flattened on 1 side.
Syndromic synostosis (complex) craniosynostosis	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.

Information:

NHS centres for craniosynostosis

There are 4 specialist NHS centres for craniosynostosis:

• Alder Hey Children's Hospital in Liverpool
• Birmingham Children's Hospital
• Great Ormond Street Hospital in London
• John Radcliffe Hospital in Oxford

Treatment for craniosynostosis

If your baby has craniosynostosis they will have regular check-ups to monitor it.

Treatment usually involves surgery. The type of treatment will depend on:

• the type of craniosynostosis your baby has
• their symptoms
• their age

Some cases of craniosynostosis may just be monitored and not need treatment.

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.

In some cases it may be possible to treat craniosynostosis with a less invasive procedure called an endoscopy (where a thin, flexible tube is passed through a small incision in the skull), followed by wearing a specially designed helmet.

The care team looking after your baby will talk to you about the options.

Depending on their symptoms, they may also need:

• regular hearing and eye tests and sometimes glasses
• speech and language therapy
• specialist dental treatments
• psychological counselling
• further surgery as an older child or teenager

Long-lasting effects of craniosynostosis

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.