Craniosynostosis

Overview

Craniosynostosis is a condition where one or more of the soft seams between a baby's skull bones close too early. These seams are called sutures. When a seam closes early, the skull cannot grow evenly. This can change the shape of the head and, in some cases, put pressure on the growing brain. It is present from birth or early infancy.

It is uncommon. It affects about 1 in 2,000 to 2,500 babies. A flattened head from sleep position is much more common and is not craniosynostosis.

It affects babies and young children. It can run in families or happen with certain genetic conditions, but many cases happen without a known family history. It affects boys and girls and all ethnic groups.

Symptoms

Common symptoms

• An unusual head shape, such as long and narrow, unusually wide, or flat on one side
• A hard, raised ridge along a skull seam
• A forehead that looks unusually prominent or uneven
• One side of the head looking different from the other
• A soft spot on the head that feels different or closes early

Symptoms in children

• The head may not grow in the usual way, or head measurements may move away from the expected curve
• Signs of pressure inside the skull can appear, such as irritability, sleepiness, vomiting, or changes in vision
• Some children have developmental, hearing, or breathing problems linked to an underlying genetic condition

Causes

Main causes

• The skull is made of several bones joined by soft seams called sutures. In craniosynostosis, one or more of these seams closes too early.
• In many babies, the exact cause is not known.
• Sometimes it is linked to a gene change or a genetic syndrome that affects how skull bones grow.

Risk factors

• A family history of craniosynostosis or a related genetic condition
• Having a known genetic syndrome
• Some cases are linked to things during pregnancy, but most are not caused by anything the parent did

When to see a doctor

See a doctor urgently if:

• Your baby has a head shape that worries you or is changing
• You feel a hard ridge along a skull seam
• Your baby has persistent vomiting, unusual sleepiness, or feeding problems
• Your child has vision changes, hearing concerns, or developmental delays

Book a routine appointment if:

• At newborn and well-baby checks, ask about head shape and head measurements
• If craniosynostosis runs in your family, talk with a healthcare provider before or during pregnancy about genetic counseling
• If your child had surgery, keep follow-up appointments even when they seem well

Diagnosis

A healthcare provider will examine your baby's head, measure the head, and ask about growth and development. They may feel the skull seams. If craniosynostosis is suspected, they may refer your child to a specialist team, such as a pediatric neurosurgeon or a craniofacial team.

Tests that may be done

• Head measurements over time
• Imaging such as a skull X-ray, CT scan, or MRI, used only when needed
• Genetic testing or a genetics clinic appointment if a syndrome is suspected
• Vision and hearing checks, and developmental checks when needed

What to expect at your appointment

You may see several specialists. Bring notes about your child's head shape, growth, feeding, and milestones. Ask questions and ask for explanations in plain words. A diagnosis is based on the whole picture, not one test alone.

Treatment

Treatment depends on which seam is affected, how old your child is, and whether there are signs of pressure on the brain. Some mild cases are watched closely. Others are treated with surgery. Care is usually led by a specialist team.

Self-care at home

• Keep all appointments for head measurements and developmental checks
• Follow your baby's feeding and safe-sleep routines
• Do not use helmets or head-shaping devices unless your specialist team recommends them
• Write down questions before appointments and bring someone with you if it helps

Medical treatments

There are no medicines that can reopen a skull seam. Treatment is either careful monitoring or surgery. Surgery aims to relieve pressure and let the skull grow into a more typical shape. It may be done in different ways depending on the child's age and needs, such as a smaller operation in early infancy or a larger open operation later. Your specialist team will explain the benefits, risks, and what to expect.

When is surgery considered?

Surgery may be recommended if a seam is fused and the head shape or brain growth is affected, or if there are signs of pressure inside the skull. The timing depends on the type of craniosynostosis and your child's age. Some children are monitored and do not need surgery. The decision is made with your specialist team.

Living with this condition

Day-to-day life is mostly about normal baby and child care: feeding, sleeping, playing, and keeping appointments. Some children wear a special helmet after surgery, but only if the team advises it. You may need to explain your child's head shape to others, and that is okay.

Lifestyle tips

• Keep a simple record of head measurements and milestones if your team asks
• Encourage normal play and movement as your child is able
• Protect your child from head injury with safe car seats, helmets for bikes, and childproofing
• Ask your child's school or nursery for support if there are learning or hearing needs

Diet and exercise

No special diet or exercise can change craniosynostosis. Feed your child a healthy, balanced diet for their age and encourage active play. If your child has feeding or growth problems, ask your team for feeding support.

Mental health and emotional wellbeing

It is normal to feel worried, guilty, or overwhelmed. Craniosynostosis is not caused by anything you did wrong. Parents and caregivers may feel stress around appointments, surgery, or comments from others. Talk about these feelings with your healthcare team, a counselor, or a trusted person. If you feel unsafe or in crisis, contact your local emergency number or a local crisis service.

Prevention

Most cases cannot be prevented, because the cause is often unknown or genetic. Craniosynostosis is not caused by how you hold, feed, or put your baby to sleep. If you have a family history, genetic counseling can help you understand the chance for future children.

Vaccines

There is no vaccine for craniosynostosis. Keep up with your child's routine vaccinations as advised by your healthcare provider.

Screening programmes

There is no routine screening test for craniosynostosis. Head shape and head growth are checked at newborn and well-baby visits. If there is a family history or a known genetic condition, your provider may recommend extra checks.

Complications

If left untreated

• Pressure on the growing brain, which can affect development
• Vision problems, including problems with eye position or eyesight
• Hearing problems in some types
• Breathing problems or dental problems, especially with certain genetic syndromes
• Ongoing head-shape differences

Long-term outlook

The outlook is usually good, especially when care is coordinated by a specialist team. Many children grow up healthy with normal lives. Some need long-term follow-up for vision, hearing, development, or head shape. Even if treatment is needed, the goal is to support your child's growth and development.

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