4 minute read
CLEFT AND CRANIAL DIAGNOSIS
CLEFT AND CRANIOFACIAL DIAGNOSIS WHAT TO EXPECT FROM PREGNANCY TO BIRTH AND BEYOND
By Alex Rottgers, M.D., Photo courtesy Melissa Smith
Pregnancy and the anticipation of bringing a new life into the world can be stressful in and of itself, but add in an unexpected diagnosis of a cleft or craniofacial birth defect at a sonogram appointment, and the journey can become overwhelming. Alex Rottgers, M.D., medical director of pediatric plastic and reconstructive surgery at Johns Hopkins All Children's Hospital, helps explain these conditions to parents.
TWO OF THE MOST COMMON CRANIOFACIAL (HEAD AND FACE) CONDITIONS WE DIAGNOSE AND TREAT TOGETHER ARE:
Cleft lip and palate: when a baby’s lip and mouth do not form properly during pregnancy. This affects baby’s eating, speaking, oral health and hearing.
Craniosynostosis: a condition where the bones of the skull fuse and result in an abnormal head shape. This could potentially increase pressure on the developing brain, and therefore is important to address.
Rottgers and his team also treat hemifacial macrosomia, other causes of facial asymmetry, nose and ear malformations, deformational plagiocephaly and vascular anomalies, including infantile hemangiomas and birthmarks. They also perform corrective jaw surgery. WHAT SHOULD PARENTS EXPECT AFTER THE DIAGNOSIS?
Learning of a prenatal diagnosis can be upsetting for many parents. That’s why pediatric plastic surgeons at Johns Hopkins All Children’s are available for prenatal counseling. It’s important families understand that it is unlikely they did anything to cause the diagnosis, and that these conditions are treatable. Our team works together with the family to develop an individual treatment plan for that child to correct their facial difference and help them emotionally along the way. For some babies, that means their first operation will be within the first six months of life, followed by additional surgeries as they grow, along with follow-up appointments along the way. HOW ARE THESE CONDITIONS TREATED?
Johns Hopkins All Children’s plastic surgeons use the principles of plastic surgery to plan operations with the same thoughtfulness and care as if it were for their child. Surgeons are exploring new techniques to improve safety and outcomes and often use new technologies such as 3D photography, 3D printing and surgical simulation to practice the surgery before the actual day. The surgeons work as part of a team with orthodontists, speech therapists, neurosurgeons and other medical providers to ensure every aspect of a child’s health related to their condition is treated. Living with a facial difference can cause additional stresses such as bullying and poor self-esteem, so the team at Johns Hopkins also includes psychologists who play an integral role helping families.
HOW DO WE CHOOSE THE RIGHT SURGEON?
Take your time researching pediatric cleft and craniofacial programs. Ask how many surgeries they have performed and what the outcomes are like and explore what services they offer to make sure your child's care will be a “one-stop shop” with a range of experts collaborating. You want to find a surgeon who is supported by a great team, who performs these operations regularly and who has broad experience and training. The best teams measure their results so they can improve and lead the field. Find a team willing to walk you through the treatment process step-by-step, answer questions and address your concerns along the way.
COULD IT BE HUNTER SYNDROME?
A rare combination of common childhood complaints could indicate Hunter syndrome (MPS II ), a progressive, genetic disease. 1,2,3 Talk to your doctor, or learn more at:
hunterpatients.com
Recurrent Ear Infections 2
Abdominal Hernia 2
Enlarged Tonsils/ Adenoids 2
Joint Stiffness 2
1. Burton K et al. Eur J Pediatr. 2012; 171 (1 ): 631-639 2. Wraith JE et al. Genet Med 2008; 10 (7 ): 508-516 3. Keilmann A et al. J Inherit Metab Dis 2012; 35 (2 ): 343-353 Copyright ©2019 Takeda Pharmaceutical Company Limited, Lexington, MA 02421. All rights reserved. 1-800-828-2088. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. S45710 04/19
LIMITED SPOTS AVAILABLE!
It’s Not Too Late To Register! mjpaa.com 38 TampaBayParenting.com SEPTEMBER 2020 ¿PODRÍA SER EL SÍNDROME DE HUNTER?
Una rara combinación de quejas comunes de la infancia podría indicar el síndrome de Hunter (MPS II ), una enfermedad genética, progresiva. 1,2,3 Hable con su médico, o conozca más en:
hunterpatients.com/es
Infecciones recurrentes en los oídos 2
Hernia abdominal 2
Amígdalas/ adenoides agrandadas 2
Rigidez en las articulaciones 2
Aiden, age 5
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