Craniofacial

All Articles in the Category ‘Craniofacial’

Living the Movie Wonder: How 13-Year-Old Nathaniel Found Freedom, Inspires Kindness

Nathaniel Newman and his mother pose for a photo together before Nathaniel undergoes the first in a series of surgeries to allow him to breathe without a tracheostomy for the first time in his life. Watch his incredible journey on ABC 20/20. Photo courtesy of ABC 20/20.

The movie “Wonder,” based on the New York Times bestseller, premiered worldwide today, and although the movie is fictional, the storyline sheds light on a rare craniofacial condition affecting 1 in 50,000 newborns: Treachers Collins syndrome.

“Wonder” weaves together an inspiring tale of kindness, as viewers are transported into the world of August (Auggie) Pullman, an ordinary boy born with an extraordinary face. The story has captured the hearts of millions, but it hits particularly close to home for one Seattle-based family.

Nathaniel Newman, 13, and his family have no trouble relating to the storyline; they live it every day. Nathaniel was born with Treacher Collins syndrome and has been called “Auggie Pullman come to life” by author R.J. Palacio.

Nathaniel knows what it’s like to walk in Auggie’s shoes. His message to others is simple. It echoes that of Auggie: Be kind. Read full post »

More Than a Cat Scratch: Baby Spencer’s Brush With Flesh-Eating Bacteria

At 7 months old, Spencer Nicholson underwent three surgeries to remove dead tissue from a rare disease he contracted due to a cat scratch.

You’ve probably seen it before: something falls, a loud noise ensues, and a cat with an arched back and poofy tail sprints away.

Unfortunately for 7-month-old Spencer Nicholson, when he loudly pulled a bin off a pantry shelf, the family cat was spooked right in his direction. Spencer fell on the floor and the cat, claws out, ran him over. Spencer was left with a deep scratch on his right cheek.

His mom, Kelsey Nicholson, took Spencer to urgent care near their home in Arlington, Washington, where she received a prescription for antibiotics. But hours later, Spencer’s face started to swell. By that evening, Nicholson was so concerned that she took her baby to the emergency room at her local hospital.

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Small Innovation Helps Train the Next Generation of African Cleft Surgeons

Cleft lip and cleft palate occur when part of the lip or roof of the mouth (palate) does not form properly.

When Dr. Richard Hopper, surgical director of Seattle Children’s Craniofacial Center, and his team of experts identify a problem, they won’t stop thinking about ways to solve it. Such was the case when they invented a device to help teach doctors in Africa how to perform cleft lip and palate surgery.

Cleft lip and cleft palate are birth defects that occur when part of a child’s lip or roof of the mouth don’t form properly, leaving a gap, or cleft. Cleft lip and palate are some of the most common birth defects in the U.S., occurring in about one in 4,000 babies. In Africa, the statistics are similar; however, the lack of medical care and shortage of surgeons to repair the birth defects can cause a cascade of problems for newborns, including malnutrition, social isolation and premature death.

Solving a problem through innovation

“When I visited Ghana for the first time, we found one of the greatest needs was in engaging and training more African doctors to perform the cleft lip and palate surgery,” said Hopper. “It’s a very technical surgery and you need a lot of education before you can do it safely.” Read full post »

Boy With Rare Craniofacial Condition Inspires Others With a Simple Message

Charlie Portrait

Charlie Nath, 11, has a simple message to share with the world.

Charlie Nath, 11, is many things. He’s funny. He’s smart. He’s articulate. He’s courageous. He’s a surfer. He’s a snowboarder. He’s a drummer.

What he’s not, is defined by his rare genetic condition: Crouzon syndrome. He says he wants the world to know, “It’s what’s on the inside that matters the most.”

Changing the world one speech at a time

Crouzon syndrome is estimated to occur in about one of every 62,500 people. It affects each person differently and the severity varies widely. The condition occurs when there is an abnormal fusion of the facial bones and skull, which affects the shape of the head and the appearance of the face. For Charlie, his eyes are set wider apart than normal, he has prominent eyes and his upper and lower jaws don’t align properly. Read full post »

Revolutionary Surgery Helps Little Girl Breathe Without a Tracheostomy For the First Time

Hannah Schow,11, with mother, Jennifer Schow.

Hannah Schow,9, with mother, Jennifer Schow.

There were only a few weeks to go in Jennifer Schow’s seemingly normal pregnancy when her world turned upside down.

She noticed she’d been gaining weight suddenly, more than she thought was expected. Her doctor said everything seemed fine, but something didn’t feel right.

Feeling uneasy, she and her husband got a second opinion and the news they received confirmed their fears.

“I could see the baby’s face on the ultrasound screen,” said Schow. “I joked that it looked like her ear was missing.”

The ultrasound technician became quiet and said she’d be right back. That’s when Schow knew there was something seriously wrong. Read full post »

Doctors Grow Jaw for Little Girl Born Without One

Lexi at homeWatch little Alexis (Lexi) Melton, 7, Irish dance across a stage, or effortlessly ski down a slope, and you would never guess the hurdles she’s had to overcome in her short life.

When Lexi was born, her family didn’t know if she would survive. Her extremely rare craniofacial condition literally makes her one in a million. But her story isn’t one of heartache, it’s a story of hope.

Lisa Skylynd, Lexi’s mother, never let anything hold Lexi back, not even her complex medical condition. She always told her,

“If you want to dance, you should dance. If you want to run, you should run.”

And that’s exactly what she’s done.

“Lexi is not only alive today because of the care she received at Seattle Children’s; she’s living her life to the fullest,” added Lisa. Read full post »

Where to Turn When Preparing for Your Child’s Hospital Stay

New experiences can be scary for children, and a hospital stay is probably one of the scariest new experiences for any child and their family. When a child or teen is scheduled for an overnight or extended hospital stay, parents can be confronted with not only the needs of their child, but also the anxiety it may create for the entire family.

Social workers can help families with many aspects of a hospital stay, from providing emotional support to more tangible needs like insurance and financial assistance. Ashley Peter, a social worker in Seattle Children’s Craniofacial Center, has found that many parents come in with similar questions, but are unsure of where to turn to first.

“As social workers, our goal is to make sure families know there is support available for a variety of needs, regardless of their situation,” said Peter. “We realize that being in the hospital is a lot for families to adjust to, which is why we are here to guide them through every step of the way.” Read full post »

Study Predicts Which Children with Craniosynostosis Most Likely to Suffer From Learning Deficits

After Olivia Bush was diagnosed with single-suture craniosynostosis at just 3 months old, her parents did not know how the condition would affect her brain development over time. A new study led by Seattle Children's is addressing these concerns.

After Olivia Bush was diagnosed with single-suture craniosynostosis, her parents did not know how her brain would develop over time. A new study led by Seattle Children’s is addressing these concerns.

Seattle Children’s researchers have published the results of a 10-year, multi-site study tracking the cognitive development of children with single-suture craniosynostosis from infancy to school age. The results could help families and clinicians better predict which children with this condition are at greater risk of having learning deficits so that they might intervene early in the child’s life.

The study, published today by the American Academy of Pediatrics and titled “Intellectual and Academic Functioning of School-Age Children with Single-Suture Craniosynostosis,” reported children with single-suture craniosynostosis, on average, were more likely than children without the disorder to have learning deficits once they started school. However, despite this trend, a little over half of the children with single-suture craniosynostosis showed no discernible learning problems.

Living with the unknown

The research is significant for parents like Cindy and Todd Bush. Twelve years ago, Cindy and Todd learned their 3-month-old daughter, Olivia, had craniosynostosis, a condition in which one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly. Craniosynostosis occurs in approximately one in 1700-2500 live births. Corrective surgery to restore the suture is preferentially performed in the first year of life. Read full post »

Seattle Children’s Takes Cleft Training Program to Africa

The first thing Dr. Michael Cunningham noticed was the crowding. Hundreds of African mothers and their young children, pressed shoulder to shoulder in a time-worn hospital’s hallway, waiting patiently for hours — if not days — to receive cleft lip and palate care for their child. It was then when he fully understood the importance of his goals in Africa and how much work lay ahead.

Cunningham, who is medical director of Seattle Children’s Craniofacial Center, and the Center’s surgical director Dr. Richard Hopper, had traveled to Africa as part of a specialized cleft training program they co-founded in 2007 now called Partners in African Cleft Training (PACT). Read full post »

A Year in Review, Looking Back at the Top Posts of 2014

New YearIn honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!

Lung Liquid Similar to One Used in Movie “The Abyss” Saves Infant’s Life, Doctors Encourage FDA Approval of Clinical Trials

Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got ‪FDA‬ approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.

Visit with Macklemore Helps 6-Year-Old Heart Patient Recover

AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore. Read full post »