What are the signs of craniosynostosis?
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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 does not always need to be treated, but may need surgery in some cases. 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. They can check if it could be craniosynostosis or a common problem in babies called flat head syndrome. This is not serious and usually gets better by itself. Ask for an urgent appointment if your child also has:
These problems can occur in young children with mild craniosynostosis if their skull puts pressure on their brain. What happens at your GP appointmentThe 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 it could be craniosynostosis, they may refer you to a specialist centre for more tests, like X-rays or scans. Information: There are 4 specialist NHS centres for craniosynostosis:
Staff at the centre can check if your child does have craniosynostosis, what type it is and if it might need to be treated. Types of craniosynostosisTable describing 5 different types of craniosynostosis and how they affect the head
The charity Headlines has more information about the main syndromes linked to syndromic synostosis. Treatment for craniosynostosisCraniosynostosis does not always need to be treated. Your child may just have regular check-ups to monitor it. Surgery may be recommended if:
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're asleep). Your child may need to stay in hospital for up to a week afterwards. Long-lasting effects of craniosynostosisMost children do not have any lasting health problems. 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. Information: The charity Headlines can provide more information and support for people with craniosynostosis and their families. Page last reviewed: 31 December 2020 On this page
What is craniosynostosis?Craniosynostosis occurs when one or more of the seams (called sutures) between the bones in a newborn baby's skull close too early. It is rare — affecting about 1 in 3,000 babies — and can be treated successfully. The skull is made up of flat, plate-like bones that protect the brain. The gaps between each bone are called sutures. There are 4 sutures in a baby's skull. Usually, the sutures stay open while the baby's brain grows and the child develops. The sutures eventually fuse together when the baby is about 2 years old. In children with craniosynostosis, the sutures close and the bones fuse too early, which doesn't leave the brain with enough room to grow. The developing brain presses against the skull, causing the baby's head to be pushed out of shape. In some cases, the skull compresses the brain and can cause problems with eyesight, hearing and intellectual development. What are the signs and symptoms of craniosynostosis?The signs that your baby might have craniosynostosis include:
What causes craniosynostosis?The cause of craniosynostosis in most babies is not known. In some cases, craniosynostosis occurs because of an abnormality in a single gene, which can cause a genetic syndrome. These syndromes include Apert syndrome, Carpenter syndrome, Crouzon syndrome, Pfeiffer syndrome and Saethre-Chotzen syndrome. Most babies with craniosynostosis do not have a genetic syndrome. Research is ongoing into the causes of craniosynostosis that is not related to a genetic syndrome. Studies have shown the risk of having a baby with craniosynostosis is higher in women who:
How is craniosynostosis diagnosed?Although craniosynostosis can be identified during a routine ultrasound before a baby is born, it is normally diagnosed in the first few weeks of a baby's life. A doctor will examine your baby's head thoroughly and measure it, and will check for any other conditions that could affect the baby's health. Your baby may have x-rays or CT scans to help confirm the diagnosis. They may have blood or other samples taken for genetic testing. It's important to detect the condition early to start treatment as soon as possible, so the brain can grow normally. How is craniosynostosis treated?Surgery opens up the bones and allows the skull to grow into a more typical shape. This enables the brain to grow and develop. Surgery for craniosynostosis is usually performed when a child is between 3 months and 12 months old. In rare cases, a child will need further surgery when they're a little older. Your child will need to see the doctors regularly after surgery, to monitor both their skull and their development. Where can I go for support?You will most likely need help and support while your child is going through craniosynostosis. The hospital should be able to help. You can also get support from Beyond Blue website or on 1300 22 4636 How do I know if my child has craniosynostosis?Doctors can identify craniosynostosis during a physical exam. A doctor will feel the baby's head for hard edges along the sutures and unusual soft spots. The doctor also will look for any problems with the shape of the baby's face.
How do you rule out craniosynostosis?A computerized tomography (CT) scan or magnetic resonance imaging (MRI) of your baby's skull can show whether any sutures have fused. Cranial ultrasound imaging may be used. Fused sutures can be identified by their absence — because they're invisible once fused — or by a ridging of the suture line.
What are symptoms of craniosynostosis?Metopic craniosynostosis causes a triangular shape to the forehead when viewed from above. The eyes may be abnormally close together. Metopic ridging without the triangular shape is a normal variant and does not require surgical correction.
Can craniosynostosis go unnoticed?Primary craniosynostosis is usually apparent at birth or within a few months shortly thereafter (neonatal period). Mild cases may go undiagnosed until early during childhood. An infant's skull has seven bones and several joints called sutures.
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