Family Faces Fall 2016 | Vol. 6 No. 1 A Seattle Children’s Craniofacial Center Publication
Dear families, as a Craniofacial team administrative assistant, I’m excited to be the new editor of this newsletter. It is my goal that this newsletter provides support, education, resources, exciting center updates and announcements that are helpful to you. We welcome your feedback and contributions. You can contact me at [email protected]. Sincerely, Danyaile Craniofacial In the News The NIFTY Cup
After a trip to Africa, Dr. Michael Cunningham collaborated with Dr. Chrissy McKinney from the University of Washington and the global health organization PATH to create a tool for millions of babies born with feeding difficulties each year. Babies with feeding difficulties often die due to starvation.
Dr. McKinney’s team created a small silicone spouted feeding cup known as the Nifty cup. The Nifty cup helps increase optimal milk intake in the shortest time with minimum spillages and allows women to express breast milk directly into the cup the infant uses.
The team of experts worked tirelessly on 3 continents over the last 5 years perfecting the cup. In May 2016, it was announced the NIFTY cup would be brought to market. The cup is expected to be in hospitals in Africa this year and will be sold for $1 each. The NIFTY cup has been proven to make challenging feedings dramatically easier. It is expected to save many lives.
Story via www.seattletimes.com & www.huffingtonpost.com
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Dr. Hopper’s Groundbreaking Surgery
Dr. Hopper received national recognition after performing a life changing surgery for Hannah Schow, who was born with a severe case of Treacher Collins syndrome. Treacher Collins is a rare genetic condition that affects the development of a baby’s bones, jaw, skin, and face muscles before birth. Babies born with the condition often have problems breathing, chewing, swallowing, hearing and speaking.
Hannah’s breathing was only possible with a breathing tube (tracheostomy). Dr. Hopper and his team created a solution: a new technique that had never been done at any center in the world. This technique, called a subcranial rotation distraction, rotated Hannah’s entire face below her skull as one piece and opened her airway. The procedure was a success! Hannah can now breathe without a tube, and she is able to do all the things she loves including: playing softball, wearing necklaces, competing in gymnastics and swimming.
Dr Hopper describes the surgery as a shift in how children with restricted airways will be treated. Currently, Dr. Hopper continues teaching surgeons around the world how to carry out this unique surgery.
Story via pulse.seattlechildrens.org
Join our private Facebook Group 1. Go to www.facebook.com and create an account or log-in. 2. Search “Seattle Children’s Craniofacial Family Chat.” 3. Click the “Join Group” button. 4. Receive confirmation message that says “Request Sent.” 5. This request goes to the group manager for approval. 6. Stay tuned for a message (via Facebook Inbox) confirming your addition to the group. 7. Join in! Learn something new and share what you know!
This is a private, supportive group of caregivers to patients of the Seattle Children’s Craniofacial Center. Here, you are encouraged to share triumphs, tributes, issues and concerns. It is moderated by the Craniofacial Center administrative assistant. Questions/Requests/Submissions: Email [email protected] Seattle Children’s | Craniofacial Center Newsletter 2
Craniofacial Families Kourtney’s Determination
Kortney Danson, who graduated from Mariner High School last week, was born with a condition that causes hundreds of tiny tumors and cysts to swell inside her left cheek and upper lip, paralyzing her facial expressions. She has undergone more agonizing surgeries to remove the growths than she can count. She was 11 months old when she had her first. Her most recent was shortly before mid-winter break of her senior year. Her future includes surgeries every 2 years. Danson, 18, doesn't dwell on her condition. Instead, she reaches out to help others. The daughter of Bob and Melissa Danson, of Lynnwood, marked her four years of high school by working with special-education students and teaching teens to tap dance. Mariner history teacher Kevin Sutton said Danson is one of the most inspiring students he's had in more than two decades in the classroom. Unlike many teens, he said, she never seemed to doubt her ability, to take on a negative attitude or to feel sorry for herself — despite enduring ongoing medical problems and multiple operations. “Throughout all of that she's been this outstandingly positive person,” Sutton said. “She's found her niche and just went for it.” Danson is one of roughly 7,000 Snohomish County high school students who make up the Class of 2016 this spring. As a freshman, she got involved with children with various limitations while teaching swim lessons at the Mountlake Terrace Recreation Pavilion. She helped them overcome challenges brought on by all kinds of conditions, including Down syndrome,
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post-traumatic stress disorder, visual impairment and developmental delays. Danson's own experience of having to take a different course drove her to find the best way to the water for each of her swimmers. “I've been a guinea pig my whole life,” she said, referring to facing unknowns of her medical treatment. She has learned from her swimmers, too. Danson discovered that sometimes even the smallest of accomplishments can be ma- jor milestones. For her students, each win moved them closer to independence. “It opened my eyes to just how special each kid is,” she said. Danson also works with children who have serious medical conditions as a junior counselor at Camp Korey in Carnation. She got to know the old dairy farm as a camper before taking a leadership role. Danson said she started to see her condition as a difference in fifth-grade when classmates gravitated into different cliques. At camp, she made her first lasting friends. Danson also volunteered during her senior year in special-ed classrooms at Mariner, guiding students as they learned to speak, read or remember numbers. Her goal was to help them graduate. “It's about preparing them to meet state standards in a special way,” she said. Beyond her volunteer work, Danson has found creative ways to express herself. She loves to dance, especially when she has tap shoes on her feet. She's been at it since she was 2. “I love tap solely because you can put force into it,” she said. “The louder you are the better.” Danson has succeeded academically, earning a place in the National Honor Society. She took four years of Spanish, which proved handy on a trip to Europe last year that included stops in Madrid and Barcelona. Danson plans to earn a bachelor's degree in psychology or special education. She's headed to Western Washington University in the fall.
“My message is the same as my senior quote,” she said. “‘You wouldn't have to think outside the box if you didn't put one there in the first place.'”
Story via Herald Net written by Amy Nile, 6/9/16
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Check This Out!
Lasting Smiles Lip Balm
Each purchase of Lasting Smiles lip balm supports a cleft lip and palate surgery for children around the world. With every 1,000 lip balms sold, a child receives a cleft lip or cleft palate surgery. The products are organic and fair- trade certified. Lasting smiles has partnered with Smile Train, the world’s largest international children’s cleft charity with a sustainable approach to a single solvable problem: cleft lip and palate birth defects. This partnership, together has the power to help more children smile for the first time.
For more information please visit http://lasting-smiles.com/
'Ugly': A Memoir Of Childhood, Deformity And Learning To Love A Distinctive Face
When Robert Hoge was born, he had a tennis ball sized tumor in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes. Amazingly, he survived—with a face that would never be the same.
Strangers stared at him. Kids called him names, and adults could be cruel, too. Everybody seemed to agree that he was “ugly.” But Robert refused to let his face define him. He played pranks, got into trouble, had adventures with his big family, and found a sport that was perfect for him to play.
And , when it Robert came time to face with the biggest decision of his life, he followed his heart.
This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are. The book features a reflective foil cover and black-and-white illustrations throughout.
Book review via Amazon.com
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Sibshops: for Siblings of Children with Special Health and Developmental Needs
Seattle Children's Sibshops are lively, pedal-to-the-metal, award-winning celebrations of the many contributions made by brothers and sisters of kids with special needs. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in between. They reflect a belief that brothers and sisters have much to offer one another – if they are given a chance.
The Sibshops model mixes information and discussion activities with new games (designed to be unique, offbeat and appealing to a wide ability range) and special guests. There are currently more than 200 Sibshops across the United States, Canada and elsewhere. All are modeled after Seattle Children's Seattle-area Sibshops! To learn where else in the world you can find a Sibshop, visit the Sibling Support Project, a national program dedicated to the concerns of brothers and sisters of people with special needs.
Sibshops for Siblings of Kids with Developmental Needs and/or Special Health Concerns includes, but is not limited to, diabetes; cancer; cystic fibrosis; muscular dystrophy; heart, kidney, liver, gastrointestinal or lung disease; autism; cerebral palsy; Down syndrome; ADHD; and spina bifida. Classes in Sept/ Nov/ Jan/ Mar/ May are for siblings ages 6 to 9. Classes in Oct/ Dec/ Feb/ Apr/ June are for siblings ages 10 to 13.
Please call Sibshops registration at 206-987-4133 or email [email protected] with questions.
For more information, please visit: http://www.seattlechildrens.org/classes-community/classes-events/sibshops/
Craniofacial Research
Clinicians and researchers at Seattle Children’s Craniofacial Center are developing a questionnaire to evaluate the health of infants with a cleft of the lip with or without a cleft palate. This research project is funded by the National Institute of Dental and Cra- niofacial Research, and is called the “Infants with a Cleft: Observer-Reported Outcomes”, or “iCOO.” In order to create this questionnaire, the iCOO team needs help from a lot of people!
During the first part of the study, they will be asking caregivers, healthcare providers, researchers, and advocacy groups to identify key aspects of health that are specific to infants with clefts. During the second part of the study they will be asking caregivers to complete the iCOO questionnaire before and after lip surgery. If you are interested in learning more about the study, please visit the ICOO website. https://depts.washington.edu/icoo/team
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