Infant head shape abnormalities: Q&A with Lurie Children’s experts

A child’s soft skull in their first two years of life leaves them vulnerable to developing abnormal head shapes.

While head shape anomalies are common, they can in some cases lead to medical issues later in life when untreated.

For children who need specialized care for head shape issues, Lurie Children’s Head Shape Evaluation Program brings together specialists in Plastic and Reconstructive Surgery, Neurosurgery, Orthotics & Prosthetics, Physical Therapy and Occupational Therapy to ensure all the care and treatment your family may need is available in one place.

Read the Q&A below for answers to some common questions about head shape anomalies with some of Lurie Children’s experts, including Noreen Pulte, APRN-NP, PNP, who leads the Head Shape Evaluation Clinic; Noopur Gangopadhyay, MD, a plastic and reconstructive surgeon who specializes in craniosynostosis; Sarah Sawers, CO, LO, a Certified Orthotist; and Breanna Baltrusch, CPO, LPO, a Certified Prosthetist and Certified Orthotist.

What are the main types of head shape anomalies?

Noreen Pulte, APRN-NP, PNP: The most common type of head shape abnormality is referred to as positional plagiocephaly, which is when a portion of the back of the head is flattened and may not be symmetrical. The other common type is brachycephaly, which refers to a more central flattening back of the head and appears more symmetrical. It is estimated 47 to 48 percent of children experience one of these head shape abnormalities.

Less common is craniosynostosis, a condition a baby is born with in which the junction or joint between two bones (known as sutures) in their skull close prematurely, prohibiting proper growth of the head.

How common are head shape anomalies? When, and how, are they diagnosed?

Noreen Pulte: Plagiocephaly and brachycephaly are relatively common. In the late 1990s, government and advocacy groups, including the American Academy of Pediatrics, launched a “Back to Sleep” campaign, encouraging parents to put infants to sleep on their backs. The campaign successfully decreased the rate of SIDS, or Sudden Infant Death Syndrome, by encouraging caregivers to place babies to sleep on their backs, rather than their stomachs. However, the campaign also resulted in a substantial increase of referrals related to head shape abnormalities, since many babies were spending much more time on their backs.

Usually, head shape abnormalities are diagnosed when the child is taken to a specialist or practitioner, where they will receive a thorough head examination.

What causes head shape anomalies? Is there a way to prevent them?

Noreen Pulte: Often, conditions are preventable.

Factors affecting head shape include multiple births or large birth weight, abnormal positioning in utero, prolonged hospitalization, aversion to tummy time, developmental delays, gestational maturity, muscle weakness and prolonged labor or devices used during labor.

In some cases, positional plagiocephaly and brachycephaly can be treated or even prevented with lots of “tummy time.” We strive for 50 percent of awake time in tummy time.

Craniosynostosis, meanwhile, is not preventable and is a condition that requires surgical intervention.

When might my baby need a helmet, and what is that like?

Noreen Pulte: For plagiocephaly, “tummy time” for babies when they're awake or showing them toys and encouraging them to turn to either side can help round-out any existing flatness. If necessary, children are sometimes fitted for a helmet with our orthotics team, which helps correct the malformation with growth.

Sarah Sawers, CO, LO (certified orthotist): Increasing “tummy time," repositioning baby and physical therapy are among our first line of defense to help correct existing flatness. If the flatness is severe, increasing or not resolving with the other measures we would consider having baby wear a helmet. The helmet helps guide the growing skull to round-out any flatness over time. It provides a corrected shape into which baby’s head grows. Depending on baby’s age and severity of flatness, he or she may wear a helmet full-time for three to six months.

Breanna Baltrusch, CPO, LPO (certified orthotist and prosthetist): The cranial remolding orthosis (helmet) works by redirecting growth of the babies’ head in the direction of the flatness. For example, babies who are diagnosed with brachycephaly typically have flatness in the back center of his/her head. A helmet designed for brachycephaly will make contact with the sides of the head and have a void in the back center where we would like the head to grow. Following a slow wean in period, tolerance for helmet wear is generally very high. Wear time for the helmet is 23 hour per day to ensure we are capturing all growth. The average length of treatment is approximately four months, however this is dependent on the patient’s age, severity of malformation and how old they were when they started helmet treatment.

When may surgery be needed to correct a head shape anomaly? At what age would surgery normally happen?

Noopur Gangopadhyay, MD: Generally, babies with plagiocephaly and brachycephaly do not need surgical interventions. Many different forms of craniosynostosis, however, will require a surgical fix. In the majority of patients, only one suture closes too early. For a small percentage of patients with craniosynostosis, more than one suture can be closed — these are often inherited conditions. When needed, surgery to correct head shape is usually performed before in the first year of life. Minimally-invasive techniques such as a strip craniectomy with postoperative molding helmet therapy can be used between the age of two to five months. Total calvarial vault remodeling is usually performed between the age of nine to 12 months.

What is surgery like for a head shape anomaly? How long will recovery last?

Dr. Gangopadhyay: Experts in plastic and reconstructive surgery and neurosurgery, including Arthur DiPatri, MD, at Lurie Children’s team up to offer surgical options for babies with forms of craniosynostosis.

For infants up to five months of age, some may be able to undergo a minimally invasive procedure, an endoscopic strip craniectomy, for treatment of some forms of craniosynostosis. This procedure is an alternative to a more traditional open remodeling surgery to reshape the bones of the skull. This endoscopic strip craniectomy often means a shorter stay in the hospital (often overnight) for families, smaller incisions, less blood loss and a shorter operative time than the traditional open surgery.

Still, sometimes a more traditional open surgery will be more appropriate for babies (usually done by the age of nine to 12 months). Surgery involves removing the fused suture and remodeling the bones of the skull, forehead and orbits. Our team has many years of experience in doing all types of craniosynostosis-correcting surgeries. There are several techniques that can be used, and our surgical care plan is individualized based on a variety of factors.

Why is Lurie Children’s the best place for head shape evaluation and care?

Dr. Gangopadhyay: Lurie Children's Head Shape Evaluation Program offers a team of medical and surgical professionals who evaluate and treat infants in a collaborative way. This ensures the child is getting customized care from multiple specialists who work together in a collaborative fashion.

We will discuss all treatment options with your family to ensure you can make the right and most informed choice for your child’s care, and we will be there for you every step of the way.