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Craniosynostosis 101: Commonly Asked Questions

Craniosynostosis is more common than you realize. This condition affects 1 in 2000 babies. A baby’s skull is made up of bone plates that come together at seams or “sutures”. These areas allow for the brain to grow, while the skull grows together slowly. A baby’s soft spot on top of the head is an area where several of these sutures normally come together – we have all seen how a baby’s soft spot gets filled in with bone over time. When this bony fusion happens too early at any “suture”, the condition is called craniosynostosis. It can cause significant deformity of the head shape over time because the skull bone at the fused suture cannot grow properly, while the brain is getting bigger underneath.  The treatment for craniosynostosis is usually surgery. Here at Texas Children’s Hospital, we have a dedicated team of specialists from different fields working together to help children and families through their journeys. If the diagnosis is made early, some children with specific types of craniosynostosis are candidates for minimally invasive endoscopic surgeries, which allows them go home the very next day. Other children need procedures that require reshaping after the skull grows a bit thicker. It is our passion to make sure that each child has the best result possible and goes on to a happy, healthy childhood. We watch our children grow up through school age even though we meet when they are babies. Our team is active in research so that we can make our field better and better for generations to come. Even though we think our patients are cute as can be, our patients’ parents are the real stars – they go through the challenging times of learning about the diagnosis and treatment options, and then take care of their children so gracefully after surgery. We understand our patients are your babies, so we created a Parent-to-Parent Network. Parents who have been through surgery before offer to take another family facing surgery under their wing. We are so proud of our moms, dads, and babies – it is truly a team, a family, and a village here at Texas Children’s Hospital.

What is craniosynostosis?

It is a congenital premature fusion (closure) of one or more sutures on a baby’s skull. In a baby, the skull is not a solid piece of bone, but several bony plates separated by fibrous “sutures”, or seams. These sutures allow the skull to expand as the brain grows, and will eventually grow together to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse too early, causing restricted skull growth and worsening head deformity if it is not corrected. Some (but not all) children with craniosynostosis may suffer from high pressure on the brain. This pressure can cause headaches, developmental delay, and eye problems.

Is it common?

Craniosynostosis occurs in one in 2000 births and is often without a known cause. It can sometimes be linked to a genetic syndrome. Most children with craniosynostosis are otherwise healthy and have normal intelligence. In cases where it is passed down through genes, the genetic syndromes can be associated with health problems such as breathing complications and other birth defects.

What is a symptom of craniosynostosis?

The most common sign of craniosynostosis is an oddly shaped head at birth or by the time the child is a few months old. The deformity usually gets even more noticeable over time. The head shape depends on the location of the fused skull suture. For example, in the most common type, sagittal synostosis, the skull becomes long and narrow with a broad forehead and a pointy shape in the back. In coronal synostosis on one side, the forehead and eye socket are not even. The fused suture can sometimes be felt as a heaped-up bony ridge, or a baby’s soft spot can be much smaller than expected. In rare cases, the deformity causes pressure to build up on the baby’s brain.

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How is craniosynostosis diagnosed?

Craniosynostosis is diagnosed by a specialist experienced in examining a child’s head shape, such as a neurosurgeon or plastic surgeon.  The diagnosis is often made by meeting a child in person. Special tests, such as a CT scan, confirm the diagnosis by showing the bony abnormality of the fused suture. Here at TCH, we have a variety of gadgets to follow a child’s head shape without exposing him or her to the radiation associated with CT scans. We are careful to order CT scans only after we have met a child and feel that a scan is necessary for further treatment planning. Craniosynostosis should be distinguished from positional plagiocephaly, a term that refers to a crooked head shape without a fused suture. As the name suggests, positional plagiocephaly is typically from a baby’s preferred position especially when lying on the back of the head. Babies’ skulls can become flat or lopsided when they prefer to lie on one spot when they are young, before they learn to roll over and sit up. This difference between craniosynostosis and plagiocephaly is very important to recognize because craniosynostosis is addressed by surgery, but plagiocephaly does not need surgery.

How is craniosynostosis treated?

The treatment is usually surgery, performed by a pediatric neurosurgeon and pediatric plastic surgeon. Helmets cannot help “un-fuse” a bone suture that is already fused, so surgery is the way to correct the fused suture problem. If surgery is recommended, we have detailed discussions about the treatment options and what to expect. Typically, surgery is performed in infancy (2-10 months of age). Surgery options depend on the particular suture that is fused and the best technique for that specific head shape problem. Our priority is to perform surgery when it is most safe and effective so that our patients can have the best result with one procedure. For younger babies with sagittal synostosis, metopic synostosis, or lambdoid synostosis, we offer minimally invasive endoscopic surgery, which is a surgery done with a small camera which reduces the hospital stay to overnight only, and allows for smaller scars. For other specific craniosynostosis conditions, we sometimes recommend waiting for a baby to grow a number of months, until the skull bones are a bit thicker so that the bones can be shaped well in surgery. Each baby is different, and we aim to do the very best for each baby and family. For a more in-depth look at craniosynostosis, refer to the diagram below:

Please feel free to call us at (832) 822-3950 to learn more. Our passion is to help children and families through this journey, and we want to make sure parents are completely comfortable and prepared each step of the way.  For more information about craniosynostosis, visit here and to learn about Texas Children’s Craniofacial and Craniosynostosis Clinic, visit here.

Dr. Sandi Lam, Pediatric Neurosurgeon