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Madelynn suffered from Crouzon syndrome. Read more about her experience with the Plastic Surgery team at UPMC Children’s Hospital of Pittsburgh.
Crouzon syndrome is a rare genetic disorder that affects about one in 50,000 babies. Children born with Crouzon syndrome will have abnormalities of the bones of the skull and face. Another name for Crouzon syndrome is acrocephalosyndactyly.
Crouzon is caused by changes in a baby's genes. These changes may be inherited from a parent or may happen for unknown reasons. The same gene changes that cause Crouzon also cause several other syndromes, including Pfeiffer, Apert, and Muenke syndromes.
Crouzon syndrome is a type of craniosynostosis, a condition in which the sutures, or seams, that join the pieces of a baby's skull together close before they should.
Crouzon syndrome is a genetic condition that may occur due to random genetic changes with no known cause. Children also can inherit a gene mutation for Crouzon syndrome from a parent who has the diagnosis.
Only one parent needs to carry the gene to pass it on to their child. Each child born to a parent with the syndrome has a 50 percent chance of inheriting it.
Some experts believe that male babies may be affected more often than females.
Having a family member with Crouzon syndrome is a known risk factor for being affected. Children born to older fathers may be at an increased risk.
Because Crouzon syndrome can affect each child differently, complications will also differ.
For example, a child with craniosynostosis may have problems with skull and brain growth as well as vision problems. If there are problems with the bones of the face and jaws, the child may have breathing and feeding problems.
Some children may have other bones that fuse including the wrist or spine, which can impair growth.
If Crouzon is left untreated, it can lead to serious complications, including:
Your child's doctor may suspect Crouzon at birth, usually due to the appearance of specific facial features. In more mild cases, the facial features may not be noticeable for several months. The condition isn't usually diagnosed before birth.
If your child's doctor suspects your child might have Crouzon, they'll conduct the following tests to confirm the diagnosis:
Children with Crouzon have a certain set of facial features that usually leads their doctor to suspect the diagnosis. These features might be barely noticeable or more severe, and include some or all of the following:
Patients with Crouzon syndrome will require many different types of treatment throughout their childhood. Because some problems are more serious than others, your team will focus on those first.
This includes making sure that your child's breathing is normal, their eyes are healthy and their brain is safe and developing normally.
Because every child's case is slightly different, a team of specialists will work with you and your child to find out which treatment options are best for them.
Based on your child's condition and needs, your team may suggest the following treatments:
Children with Crouzon have a good prognosis. With early treatment and supportive care, most children with Crouzon won't have long-term problems.
UPMC Children's Hospital of Pittsburgh draws on 50 years of experience to treat over 3,000 children each year. Our reputation of excellence in patient care earned us consistently high rankings on the U.S. News & World Report Best Children's Hospitals listings. Parents who trust their child's care to UPMC Children's Hospital can rest assured that their child will receive the high-quality services they need.
Our experts come from various disciplines and have the training required for caring for children with complex craniofacial conditions.
We'll tailor a treatment plan based on your child's needs. We consider all aspects of your child's health including their brain and skull and eyes, airway and feeding, and self-image.
We work with other specialists to make sure your child gets the right care at the right time.
Our goal is to achieve optimal appearance, speech, hearing, and brain psychosocial development at the earliest possible age.
Meet our team at Cleft-Craniofacial Center and learn about our treatment options. Or contact UPMC Children's Hospital of Pittsburgh at 412-692-5325.
Meet our team at UPMC Children's Hospital of Pittsburgh's Cleft-Craniofacial Center and learn about our treatment options, or contact UPMC Children's Hospital of Pittsburgh at 412-692-8650.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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