Experiences with
Craniosynostosis

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

Your baby or child has symptoms of craniosynostosis and:

they seem to have problems with their vision or hearing
they have speech problems or they're slow to start talking
they have difficulty breathing normally through their mouth, which can lead to snoring and sleep problems at night

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.

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.

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.

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.

SymptomsDiagnosisMedical treatmentsComplications

Signs of craniosynostosis can include your baby having a long, narrow head, a pointy forehead, and one side of their head being flat or bulging out.

A GP can check your baby's head. If they think your baby could have craniosynostosis they may refer them to a specialist for tests like X-rays.

Craniosynostosis treatment usually involves surgery. The type depends on your baby's age, symptoms and the type of craniosynostosis they have.

Craniosynostosis does not always cause lasting health problems, but it can affect the shape of your child's head. They may need regular check-ups.