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URMC / Golisano Children's Hospital / Ways to Give / Strong Kids News / July 2016 / Pediatric Cleft and Craniofacial Center’s Innovative Team Approach Simplifies Care for Complex Probl

Pediatric Cleft and Craniofacial Center’s Innovative Team Approach Simplifies Care for Complex Problems

Laila1Jodi and Frank Gleichauf didn’t know what to do when they were told their baby would be born with cleft lip and palate. Their daughter, soon to be named Laila, had a bilateral facial cleft that would require surgery to repair after her birth. A cleft, or separation of the upper lip and/or roof of the mouth, occurs very early in development of a fetus. Although cleft lip and palate is the most common anomaly of the head and face, it occurs only in one of every 1,000 births. In addition to her cleft, Laila was also diagnosed with a rare congenital facial condition called Goldenhar syndrome.
 
“It was scary,” said Jodi, a resident of Naples, NY. “Frank and I were very nervous. The doctors did prep us on what to expect, but nothing can prepare you for the journey.”
 
Laila’s condition required a two week stay in the neonatal intensive care unit (NICU) at UR Medicine’s Golisano Children’s Hospital where she required special feeding therapy to make her discharge safe.
 
Laila2In the first year of life Laila required two reconstructive surgeries by the pediatric plastic surgery team; her cleft lip was repaired at 5 months and her cleft palate was repaired at 10 months of age.
 
Both surgeries took their toll on Laila and required Jodi to be constantly monitoring her so that she did not rupture the areas that were repaired. Laila’s cleft lip and palate were repaired, but her journey is still not over.
 

The Cleft and Craniofacial Team

The Pediatric Cleft and Craniofacial Center at Golisano Children’s Hospital cares for more than 500 patients a year with various facial differences. Cleft lip and palate is the most common surgery performed at the Cleft and Craniofacial Center, and the treatment requires the involvement of experts from many subspecialties.
 
TeamCleft and craniofacial patients are evaluated and treated by as many as 10 subspecialists including: plastic/craniofacial surgeon, pediatric neurosurgeon, orthodontist, pediatric dentist, sleep specialist, speech and language pathologist, otolaryngologist, audiologist, ophthalmologist, genetic counselor, social worker, psychologist, and a nurse team coordinator. The comprehensive nature of the cleft and craniofacial team allows patients to receive optimal care from a diverse group of medical professionals.
 
“Our team does a great job exemplifying a model of multidisciplinary care for the University,” said Clinton Morrison, M.D., Director of the Cleft and Craniofacial Center. “We are able to get all our subspecialists into one place at one time to meet the needs of our families without them having to come to multiple visits. We’re able to put our heads together.”
 

Benefiting from a Team Approach

The Gleichaufs drive over an hour to Laila’s appointments at Golisano Children’s Hospital. Laila, now 5 years old, just graduated from kindergarten.
 
She, like all the other patients of the Cleft and Craniofacial Center, is followed on an annual basis. During her appointment she meets with all of the relevant providers caring for her complicated condition who then formulate a treatment plan for the coming year.
 
Morrison “It’s tremendous. If we didn’t have the craniofacial team, I don’t know where we would be.” said Jodi. “I try my best to do everything to help her through it, but I’m so glad they are that close to us so that we can get all the care that she needs. We’d be lost without them.”
 
LailaToday“Getting all of these doctors in one room after clinic allows for the most comprehensive single visit possible,” said Morrison. “After seeing patients, each provider gives their recommendations for each child. Then, our nurse team coordinator works with the family to ensure they understand and have no issues implementing their child’s treatment plan.”
 
Communication is one of the team’s most important goals.
“We recognize the importance of making sure that children and their families stay in close touch with our team members,” said Melisande McCheyne, N.P., team coordinator of the Cleft and Craniofacial Center. “It’s critical for our patients and families to have all the information they need so they aren’t surprised during any part of the journey.”
 
If you have questions about the Pediatric Cleft and Craniofacial Center and how it may be beneficial to a child, contact the team at 585-275-1000.

 

Global Administrator | 7/18/2016

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