Scott Bartlett, MD: The beauty of being at a place like CHOP is that we have people here that can take care of hearts, and lungs, and hands, and feet, and brains. So a heart problem, or a spine problem, or an intra-abdominal problem, like a kidney problem. Jesse Taylor, MD: Oftentimes kids with craniofacial anomalies have other problems that don’t have to do with the head and neck. What your child will need will depend upon his age and degree of deformity, and the team with tailor the treatment for your child. In children that have less severe deformities, frequently it’s a matter of just taking the existing bone structure and cutting it, and shifting it, or elongating it. Oftentimes, we create an entirely new ear by taking cartilage from the rib. In some children we have to rebuild the jaws, and we do that with bone grafts taken from the rib or from the lower leg. Scott Bartlett, MD: Children with craniofacial conditions frequently need a series of operations over their lifetime. Surgery and treatment for craniofacial conditions That care is right there as soon as the baby is delivered. Oksana Jackson, MD: Patients have immediate access to all the specialists they may need. Nahla Khalek, MD, MPH: The Garbose Family Special Delivery Unit is a labor and delivery suite that is specifically dedicated to caring for pregnant women carrying fetuses with malformations. Oksana Jackson, MD: Meeting families prenatally really helps educate them and helps them understand so that when we meet them after delivery, they are a little better prepared. That initial hope, excitement and joy then gets replaced with anxiety, and fear about the future for their unborn child. Nahla Khalek, MD, MPH: It’s always coming off the experience of their ultrasound and wanting to figure out if it’s a boy or if it’s a girl. Once they receive a diagnosis, then we get involved. Oksana Jackson, MD: We are seeing more and more patients prenatally. It’s also important to note that a growing number of craniofacial patients are diagnosed before birth. CHOP has a specialized team to care for these babies in our Neonatal Intensive Care Unit, including some of the best pediatric ear, nose and throat specialists in the world. Some children with craniofacial conditions have airway problems, which may cause trouble breathing. It’s important that the baby get expert care immediately. Scott Bartlett, MD: For many of these children, they’re diagnosed at birth or soon after, based on their appearance. And so when someone comes to me see or one of my colleagues, they’re getting somebody who’s doing this day in and day out. Jesse Taylor, MD: We see 40 to 50 new kids with craniosynostosis a year 10 to 12 kids per year with the new diagnosis of hemifacial macrosomia 200 to 300 kids a year in the craniofacial team. So in order to get experience in one type of disorder, you have to see a large number of patients over a number of years. They go from more mild to more severe along that spectrum. Like craniosynostosis, hemifacial microsomia, and so forth. There’s 10 or 15 that are the most common of those that we see. You’re talking about several hundred distinct craniofacial syndromes. So it can be an involvement of any of those or all of those. And by that we mean the skull, the brain, the eye sockets, the nose, the upper jaw, the lower jaw, the mouth, and the ears and hearing apparatus. They’re basically deformities involving the facial structures or cranial structures, or both. Scott Bartlett, MD: There’s probably in the range of somewhere in 1 in every 2,000 birth with craniofacial anomalies. Jesse Taylor, MD: The overwhelming majority of our patients lead very healthy, very, really normal lives. Scott Bartlett, MD: The things that we can do positively in the life of a young person can influence them for the rest of their life. They’ve got friends, and sports, and social activities. They’re running around the rooms laughing. Oksana Jackson, MD: I’m inspired by the fact that they’re normal kids. Diagnosis and treatment of craniofacial conditions Explaining craniofacial conditions
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