Craniosynostosis Care

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Babies often are born with unusually shaped heads. Most of the time, there’s nothing to worry about and their head shape evens out. But sometimes it can be a sign of a condition called craniosynostosis.

What Is Craniosynostosis?

Babies are born with soft skulls which are supposed to harden over time. This gives the brain time to grow. But sometimes their skulls fuse in certain areas and harden too soon. This means there isn’t enough space for the brain to grow.

When left untreated, craniosynostosis can cause:

  • Developmental delays
  • Vision problems
  • Head shape deformities

Luckily, there are many treatments to correct this problem.

Craniosynostosis Care at UVA Health Children’s

For more than 3 decades, UVA Health Children’s has been an international leader in treating craniosynostosis. Our complex craniofacial team's expertise has led to our hospital being a recognized Craniofacial Center of Excellence. We perform more craniosynostosis surgeries than any other center in Virginia.

When it comes to diagnosing and treating craniosynostosis, we have the best record and the most experience. Not only can we provide the full spectrum of care, but we also provide support services. These services make sure your baby stays on track developmentally.

For those traveling a long way, we offer telehealth follow-up and initial visits. We also work with therapeutic centers around the state for cranial helmets. That means we can help you find a center near home.

How Do We Know It’s Craniosynostosis?

We suspect craniosynostosis when your baby’s head shape takes on a characteristic “look.” This look is determined by the type of craniosynostosis. We can spot it in a few ways.

The first time craniosynostosis can be spotted is during an ultrasound. Thanks to good prenatal scans, we find some cases before birth. But we usually can't see it before your third trimester, so it's often missed before birth.

Sometimes your doctor will notice something isn’t quite right at birth. Other times your pediatrician will notice something isn’t right at a well-baby check. They’ll most likely then refer you to UVA Health Children’s to see our craniofacial team.

Symptoms of Craniosynostosis

Head shape is the main symptom that causes concern. Most of the time, it's the only real symptom. But sometimes there are other symptoms resulting from the pressure around the brain. Some of those include: 

  • Inconsolable crying
  • Not eating well
  • Vomiting
  • Being overly sleepy
  • Sometimes not breathing at night (apnea)

Craniosynostosis Treatments

The best treatment for your child depends on a lot of factors. At your first appointment, you’ll sit down with our team. We'll  talk through which option will work best for your child’s individual situation and what’s right for your family. At that time, the craniofacial team may recommend imaging to confirm a diagnosis.

Minimally Invasive Surgery

We offer endoscopic surgery for babies younger than 4 months. In most cases, babies only need to stay in the hospital for a single night. Unlike many other procedures, this procedure does not typically require additional surgeries. After this surgery, your babies will wear a helmet for 6-9 months.

Helmet for Craniosynostosis

Wearing a helmet is part of endoscopic surgery. We can fit your baby for a helmet in our orthotics department or coordinate with a provider closer to your home. The helmet offers protection and helps with your baby's head shape. 

Spring-Assisted Craniosynostosis Surgery

If your baby is between 4-6 months, we typically recommend a spring-assisted surgical repair. We replace the piece of fused bone we remove with a cranial spring. The spring helps your baby’s head reshape as it continues to grow.

After the surgery, your baby will only need to stay in the hospital for 1-2 days. They also won’t need to wear a helmet.

In a few months, we’ll remove the spring. This procedure is very short, and recovery is even faster than the first surgery.

Cranial Vaulting

UVA Health Children's pioneered cranial vaulting, the gold standard of craniosynostosis care, in the 1970s and we’ve continued to improve it over time. This surgery is generally done for severe cases of craniosynostosis in babies that are 8-9 months old.

A baby in the hospital

Pediatric Radiology

Offering child-specific imaging is one of the reasons parents choose a children’s hospital. Our radiologists are skilled at occupying even the wiggliest of patients. We are also careful to use the smallest dose of radiation we can while still getting a clear image. That means we can get the head CT we need to confirm craniosynostosis.

Learn More About Imaging for Babies

Craniosynostosis FAQs

Each case of craniosynostosis is different. Your doctor will best be able to answer specifics about your child, treatment plan, and outcomes. But here are some of the most frequently asked questions across cases.

How rare is craniosynostosis?

While uncommon, this disorder is far from rare. 1 in every 2,500 children is born with this condition.

Will this affect my child’s long-term health or lifespan?

Once treated, children with craniosynostosis have no lasting changes to long-term health or lifespan. We’ll follow up with them for 5 years to make sure everything is going well.

What caused my child to develop this condition?

Most of the time, there is no known cause. Sometimes, a genetic condition is responsible.

If we suspect this, we’ll advise your family on genetic testing. But craniosynostosis on its own is not a reason for concern.

Will this affect my child’s appearance?

It could. But that’s why plastic surgery is involved in surgical procedures for this condition. Sometimes additional procedures are necessary, but we’ll work with you to address appearance concerns.

What can I do?

Parents help most by being there for their child. But there will be some additional follow-up appointments. Regular eye exams and developmental evaluations help to catch problems early.

Can we wait for surgery?

Most of the time, doing surgery earlier is better. The sooner the craniosynostosis is addressed, the sooner your child can continue to develop. We prefer to see babies who are 4-6 weeks old so that we can give parents a full range of surgical options.