Craniofacial

All Articles in the Category ‘Craniofacial’

After a Long Journey of Nose Reconstruction, Tristan is Smiling Again

Tristan, 9, recently underwent a three-stage nose reconstruction.

For most of the past year, 9-year-old Tristan Beck has been on a long, challenging journey toward nose reconstruction after a traumatic accident left him with a missing nose.

December 20, 2017 was a normal day of winter break for the Beck family. Tristan and his older sister were visiting their mother’s office to drop off food for a party. When they returned to the car, a dog was in the parking lot, showing no signs of aggression. However, when Tristan began to throw the dog a piece of food, it lunged at Tristan’s face and pulled him down. Tristan’s sister pulled him back, and the dog ran away.

All Tina Beck, Tristan’s mother, remembers is the blood on his face when his sister brought him back into her office.

“There was so much blood it was hard to see exactly what was wrong,” said Beck. “It was very hard for me to look at my son at first. My heart hurt and I was blaming myself for what had happened, but I wanted to be strong for him.”

The family called 911, and Tristan was transported to Seattle Children’s Emergency Department. Read full post »

New Genetic Causes of Cleft Lip and Palate Revealed

Representing about 70% of cleft lip and palate cases worldwide, non-syndromic cleft lip and palate typically occurs in isolation without other physical abnormalities.

A study conducted by an international research team, which included investigators from Seattle Children’s Research Institute, implicates variants in four genes as a primary cause of non-syndromic cleft lip and palate in humans. The genes, associated for the first time with cleft lip and palate, encode proteins that work together in a network, providing important insight into the biological basis of one of the most common physical malformations. Read full post »

One Mother’s Mission to Share Her Love of Books With Kids, Offers VIP Seahawks Experience

Kai was first seen at Seattle Children’s Craniofacial Center when he was 5 months old.

Samantha Alexander first met Dr. Emily Gallagher, a craniofacial pediatrician in Seattle Children’s Craniofacial Center, when Alexander brought her 5-month-old son, Kai, to the clinic. Kai’s primary care doctor thought plates in his skull had fused together too quickly. He was evaluated for a metopic ridge, creating a point on his forehead.

While she feared he may need surgery, everything turned out fine. Alexander lovingly jokes, “He has a really big head.”

But from that initial clinic appointment, Alexander and Gallagher bonded over an unlikely love: children’s books. After the appointment was over, they chatted about their favorite books for nearly 30 minutes.

Alexander was an elementary school teacher before moving to Seattle with her husband, DJ Alexander. They moved in 2017 when DJ, a professional football player, was traded to the Seattle Seahawks. She had given up her teaching career, but she held fast to her love of books.

During that first appointment, Gallagher brought up a program called Reach Out and Read, which gives books to children 6 months to 6 years old during well-child visits. Gallagher started the program in the Craniofacial Center as a novel program outside of primary care. In the Craniofacial Center, pediatricians encourage families to read aloud together as a way to promote language development, with an additional focus on children with craniofacial differences who may face additional challenges with speech. Although Alexander’s son was too young for the program at the time, she says she instantly knew she wanted to help Gallagher expand the program.

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Asher Pens a Letter of Gratitude to the Doctor Who Cared for Him and His Dad

Asher was born with Robin sequence, which causes a smaller lower jaw and the tongue to be placed further back than normal. These features tend to block the baby’s airway.

The same day Kirstin and Chris King found out they were having a baby boy, they also received some unexpected news.

“We weren’t anticipating anything out of the usual,” said Kirstin. “But the look on the doctor’s face told us something was wrong.”

The ultrasound images revealed their son’s jaw was visibly stunted, which left the family with more questions than answers.

“I remember going home and thinking, ‘What just happened?’” said Kirstin.

Kirstin described the experience as a whirlwind. Read full post »

Helping Kids With Cleft Lip and Palate Thrive

Cleft lip and palate is the most common condition Seattle Children’s Craniofacial Center treats.

Finding out your child will be born with a cleft lip and palate can be unexpected and distressing for many families. Plagued with questions, parents may wonder if their child will be able to thrive, have speech issues, or what their smile will look like. Dr. Craig Birgfeld, a craniofacial plastic surgeon at Seattle Children’s, enjoys being able to ease a family’s anxiety. At Seattle Children’s, he knows these families are in good hands.

“When patients come to see us they become part of our family,” said Birgfeld. “To me, the best part of our job is seeing these kids grow up and be completely normal kids. It’s hard to remember them as a baby with a cleft. That’s the true test, and one of the reasons we do what we do.” Read full post »

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 one in 50,000 newborns: Treacher 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 »