Complex Craniofacial Care
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Finding out your child has a craniofacial condition can be overwhelming. These conditions can change your child’s facial features or impact their development in multiple ways. Craniofacial conditions change how your child experiences and communicates with the world. Any treatment that affects this area is critically important. You want to make sure the team that helps your child is the best available.
At UVA Health Children’s, our craniofacial team includes specialists from around the hospital. Every child, every family, and every craniofacial condition is unique. And so is the treatment plan we’ll develop for your child. We’ll address your concerns, and make sure you have the information you need every step of the way.
Diagnosing & Treating Complex Craniofacial Conditions
While some craniofacial conditions can be seen at birth, others develop over time. During the first year of life, your baby’s head grows rapidly. As it grows, it may start to look flat, peaked, or otherwise oddly shaped. If it does and seems to be getting worse, it's best to see a doctor soon. Many craniofacial conditions are easiest to treat early.
Many pediatricians refer their patients to UVA Health Children's complex craniofacial team for evaluation and treatment.
Craniofacial Treatments
Not all craniofacial conditions require surgery. If your child’s condition is mild and isn’t likely to cause a problem, we can use other treatments.
These include:
- Cranial helmeting
- Physical therapy
- Speech and language therapy
Minimally Invasive Procedures
Because a newborn’s head isn’t fully formed, we can sometimes offer a minimally invasive treatment. These have a shorter recovery time and require less time in surgery.
Surgery
UVA Health Children’s pioneered many of the first surgeries for craniofacial conditions. Since then, we’ve continually worked to improve these procedures.
We perform more craniofacial surgeries than any other center in Virginia and have received rewards for our outcomes.
Craniofacial Conditions We Treat
We treat a wide range of craniofacial conditions. But these are some of the ones we see most frequently.
- Apert syndrome
- Brachycephaly
- Cavernous malformations
- Cleft lip and palate
- Chiari malformation
- Crouzon syndrome
- Encephalocele
- Hemifacial microsomia
- Hydrocephalus
- Kleeblattschadel syndrome
- Non-syndromic & syndromic craniosynostosis
- Oxycephaly
- Pfeiffer syndrome
- Pierre Robin syndrome
- Plagiocephaly
- Saethre Chotzen syndrome
- Scaphocephaly
- Trigonocephaly
Our Approach to Craniofacial Care
Every craniofacial condition is unique. And so is our approach. Our team combines their expertise to create the best treatment plan for each child.
Jonathan Black, MD: Typically, craniofacial conditions are congenital or diagnosed at birth. And those can vary from problems with how the body fused at the face or the skull or how it grows at the face or the skull.
Heather Spader, MD: So, when a baby's born, sometimes, a pediatrician will note that there's a ridge maybe along the middle of the head here or a ridge here. And that ridge means that the bones are fused and it restricts growth.
Jonathan Black: Typically, the conditions we treat are fallen to the realm of craniosynostosis. Those kids come to us somewhere in the one month to probably six month range, when somebody notices the abnormal shape. And then depending on their type of fusion, we have different operations that can treat these different things, and we tend to perform them sometimes as early as three months of age and sometimes as late as a year of age. So, it just depends on the type that they have involved.
Heather Spader: There are also children that have syndromes such as Apert syndromes or Crouzon syndrome, that have multiple sutures that are fused and have much more complex conditions. And we specialize also in treating these children that have very complex craniofacial problems.
Jonathan Black: One issue that kids with these conditions face is, they take more than one surgery in many instances. With craniosynostosis, luckily, we rarely have to treat with more than one surgery, but you do have to follow children as they grow, to make sure that their treatment stays with them and grows with them until they're fully done growing, which is at around 16 to 18. So, our staff is really excellent at making the patient's journey as easy as possible. So, in terms of helping with scheduling imaging, coordinating those image appointments with the same time as we have a visit in clinic, so that way we can maximize what the patient and their family are able to accomplish at UVA in one single trip.
Heather Spader: We have our nurse and our nurse practitioner here and always available and answering my chart messages and answering phone calls. We also have residents that are here 24/7.
Jonathan Black: We have a neurosurgeon and myself, that have training specifically in this area. And we offer all of the different techniques that are both tried and true, as well as brand new. So, we're able to tailor the treatment to an exact patient's needs and that exact patient's circumstances.
Heather Spader: And that multidisciplinary approach is really helpful. And all the surgeries we do, we do them together. Doing it together, really ensures better outcomes.
Jonathan Black: I really spend a great deal of effort initially just gaining rapport with kids and doing things that I know that they like and I draw from some of my experience as a parent. I think the other half to this is that, every pediatric patient you have, really another patient in the parents. Parents are very nervous, they're very worried about their kids, and doing anything you can to lower that worry or make things easier for them, is critical.
Imaging for Craniofacial Conditions
Even though a condition may look obvious, imaging is a crucial part of diagnosis. This helps us see any unique changes. We’ll use MRI or a CT scanner to look at your child’s:
- Skull
- Brain
- Eye structure
- Jaw structure
- Teeth
Some (but not all) conditions that cause craniofacial abnormalities are genetic. We may also recommend genetic testing for your child. If they have a genetic condition, we can also test the rest of your family.
Imaging That's Kid-Safe
Our radiology department specializes in working with kids. We have equipment that’s the right size for them. And we’re experienced with helping them hold still for imaging. Our pediatric radiologists' experience allows them to use the lowest amount of radiation possible and still get a clear image.
Follow-Up Care & Support
After we’ve treated your child’s condition, we’ll continue to provide follow-up care along with your local pediatrician.
Sometimes conditions require multiple operations. If that’s the case for your child, we’ll work with you on timing. It’s important to give your child time to heal.
Have to Travel?
We take some of the most complex cases from around the state. That means you may have a long way to travel. We can help coordinate care to reduce the number of trips you’ll make. We also:
- Offer telehealth visits
- Partner with therapeutic centers around the state
- Consult with your regular pediatrician
Your Care Team
Once we better understand your child’s condition, we can pair them with specialists to address their concerns.
Most of the time, your child's care team will include a neurosurgeon and a plastic surgeon. Your child may also need these specialists: