Craniosynostosis (cray-nee-oh-sin-oh-sto-sis) is a condition in which one or more of the bones that make up a baby’s skull in the head fuse together at the point where the bones meet (sutures) before the usual time, limiting the baby’s head growth.
Keeping the skull flexible allows the head to pass through the birth canal and gives the brain room to grow. To give this flexibility, the skull is made up of a number of bones. Normally, the bones of the skull do not finally join or fuse until they are around two years old. However, when a child has craniosynostosis, the sutures fuse before birth. This changes the way the skull grows and can cause pressure on the brain, which, if left untreated, can inhibit brain growth and cause significant visual and neurological complications in the future. The impact and treatment are determined by the suture affected and level of severity.
Types of Craniosynostosis
About 80 to 90 percent of craniosynostosis cases involve only one suture. However, there are lots of different types that can affect more than one suture.
To diagnose craniosynostosis, a doctor will normally look at and measure the baby’s head and feel for ridges in the sutures around the skull.
Additional tests may be required to confirm the diagnosis in greater detail. Imaging tests, such as CT scans and X-rays, can show which sutures have fused. This is important if surgery is likely. Since there may be genetic factors, the doctor may take a sample of the baby’s blood for genetic testing.
There are other centres that offer surgical treatment of craniosynostosis, and we are proud to support the cranial facial team at Leeds Teaching Hospitals.
If you live outside of the UK, talk to your doctor about how to get a referral to a local specialist. If you are not resident in the UK, you cannot receive treatment on the NHS.
This treatment is not always funded by your local NHS trust. If you are offered this treatment and are advised to source a cranial remoulding orthosis for after surgery, you can call to speak to one of our trained clinicians who will be able to advise you further.