When Victoria Reece found out she was pregnant, she and her husband were elated. During their 20-week ultrasound, they found out they were having a boy and left the appointment over the moon with excitement, envisioning a bright future as a family of three with their baby boy in tow.
The next day, they received an unexpected call.
“That’s when the chaos began,” Reece said.
The couple went back for more ultrasounds and their baby was diagnosed with a bilateral cleft lip and palate.
“We were really scared,” Reece said. “I had so much anxiety about it.” Read full post »
Twins Melody (top) and Lyric Allen were born amidst the COVID-19 pandemic. Melody, like her mother, was born with a condition called craniofacial microsomia and needed care through in-person and telehealth appointments provided by Seattle Children’s Craniofacial team in the immediate days, weeks and months following her diagnosis.
Just weeks after the state of Washington went under shelter-in-place guidelines, Jenalysse Renaud gave birth to two beautiful babies on April 17, 2020. Renaud and Donovan Allen, the twins’ musician father, named them Melody and Lyric.
Melody, a whole two minutes older than her little brother, faces a few challenges. Her left eye is smaller than her right and is being monitored for potential blindness. In addition, she likely has hearing loss or deafness in one ear, all features of hemifacial microsomia. After several tests, she was also diagnosed with malrotation— an abnormality in which the intestine does not form in the correct way in the abdomen—at just a month old. Thankfully, she shouldn’t face any prolonged consequences from that diagnosis after undergoing corrective surgery in May.
Renaud herself was born with hemifacial microsomia, the same condition Melody now faces. Craniofacial microsomia, also known as hemifacial microsomia, is a congenital condition in which the tissues on one side of the face are underdeveloped—as well as some hearing loss. Renaud was also born with a solitary left kidney. Read full post »
From day one, 21-year-old Sean Gallagher has been able to command a room. He jokes that it’s because he has a flair for the dramatic; it could also be because of his bright and infectious personality.
Sean was born with a facial difference, and his medical journey has been long and complex. MaryJo Gallagher and her husband David knew their son would be born with a small jaw, but the extent of Sean’s condition was beyond what they had envisioned. Immediately after the delivery, Sean was whisked away by a frenzied team of doctors and nurses.
The next couple days were a blur of emotions as the couple grappled with their son’s condition and what it meant for his development. They had many questions, but not nearly enough answers.
Dr. Michael Cunningham, division chief and medical director of Seattle Children’s Craniofacial Center, said he’ll never forget the first time he met Sean’s family. Sean was only 2 days old at the time. Cunningham went to visit them at the hospital where Sean was delivered.
“I was standing across the bed talking to Sean’s mom and said, ‘Everything is going to be okay,’” Cunningham said.
MaryJo said she’ll never forget that day either. She said it was like a physical weight had been lifted off their shoulders. They felt hopeful.
“He’s a family hero,” MaryJo said. “He explained to us about Sean’s condition. He knew right away what it was. We were so appreciative of him reassuring us. This is not the road we would have chosen for our little boy, but we are glad we are on it together.” Read full post »
The author with her daughter, Mariana, 7. Mariana has a rare disease called Pfeiffer Syndrome.
Often in life we have a vision of what we want or imagine our lives to be like, but along that journey, life presents obstacles and opportunities for us. It shapes us and makes us who we are.
My own journey started with its own twists and turns. I was born in Medellin, Colombia and moved to Seattle with my mom at the age of 7. Two months later I got sick. I couldn’t stop throwing up and had a hard time waking up. A year after being hospitalized on and off at Seattle Children’s, I was diagnosed with a cavernous malformation and had brain surgery two months later. My chances of surviving the surgery were small. In Colombia I would have died, but Seattle Children’s saved my life.
When I gave birth to my daughter, Mariana, 27 years later, I never imagined that she too would face a serious medical condition. Much of my life was impacted by my medical condition, but it was nothing compared to what our family would experience as we learned Mariana had an incurable rare disease. It was the beginning of a life-changing journey for our family. Read full post »
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 »
Representing about 70% of cleft lip and palate cases worldwide, non-syndromic cleft lip and palate typically occurs in isolation without other physical abnormalities. Credit: Getty Images.
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 »
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.
Read full post »
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 »
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 »
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 »