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.
Keeping a close eye on baby Asher
The rest of Kirstin’s pregnancy was monitored closely. They planned to deliver their baby by a scheduled cesarean section at the University of Washington Medical Center, but things didn’t go as planned.
Baby Asher’s heart rate began to drop during the delivery. Doctors and nurses needed to act quickly to get him out as soon as possible.
“I just wanted him to survive,” said Kirstin. “There were at least 30 people running in and out of the delivery room. Everything was happening so fast, I didn’t care as long as he was okay.”
Asher arrived on July 14, 2009. He was immediately taken away to be stabilized, and Kirstin was sent to recovery. Because of his small jaw, Asher needed to be intubated.
The next day, Asher was transported to Seattle Children’s Neonatal Intensive Care Unit (NICU). Kirstin and Chris had to wait three days before they were able to hold their baby for the first time.
“He was so adorable,” said Kirstin. “He had humongous eyes, a wrinkly forehead and a tiny jaw. Those three days felt a lot longer than they actually were. It was really hard for us.”
Asher was diagnosed with Stickler syndrome, a disorder that affects the connective tissue of the body’s joints and organs. It is common for children with Stickler syndrome to have a combination of features called Robin sequence, which causes a smaller lower jaw and the tongue to be placed further back than normal, which can obstruct a baby’s airway. Many children with Robin sequence also have a gap in the roof of their mouth known as cleft palate. Robin sequence affects one in 8,500 to one in 20,000 newborns worldwide.
“The challenges facing an infant or child with Robin sequence vary from one child to another depending on the cause of the Robin sequence, the severity of the feeding and breathing difficulties, and if the child has a cleft palate,” said Dr. Anne Hing, a craniofacial pediatrician who has treated Asher since infancy. “Health concerns related to eating, speech, hearing, breathing, and dental alignment must be closely followed as the child grows.”
For Chris, the diagnosis was familiar. He also has Stickler syndrome.
A new home, familiar faces
Walking into Seattle Children’s NICU felt like home. A nurse on the unit came over to the family with tears in her eyes when they arrived. “I saw your name on the wall,” she said.
Chris’ parents recognized her right away. That same nurse cared for Chris when he was a baby. Chris was one of her first patients, and Asher would be one of her last. She was retiring.
“It gave us a weird sense of normal,” said Chris. “We knew everything would be okay.”
Children with Robin sequence need coordinated care from a multidisciplinary Craniofacial Center, like Seattle Children’s. Seattle Children’s craniofacial team is experienced in treating children with complex craniofacial conditions, including Robin sequence. Every year, the team cares for more than 300 children with cleft-related conditions.
“Seattle Children’s Craniofacial Center providers see many children with conditions such as Robin sequence and work together to provide children and their families with information, support, and a coordinated plan of care,” said Hing. “For many children and young adults with Robin sequence, growth, development, and general health outcomes are quite good.”
Many of the same doctors who treated Chris as a child also treated Asher, like Dr. Richard Hopper, surgical director of Seattle Children’s Craniofacial Center.
“When I first met Asher he was a few weeks old, weighed six pounds, and was struggling so much to breathe, he turned blue without oxygen,” said Hopper. “All our team wanted to do was to help this young boy breathe normally as quickly as possible.”
Chris grew up at Seattle Children’s, making yearly trips to the hospital for various things, and so he knew firsthand the expert care his son would receive.
“Seattle Children’s was like a second home to me,” said Chris. “I would usually go once or twice a year. I’ve gone through what my son’s gone through, which adds a level of comfort. When I met Dr. Hopper, he was just starting out.”
It was surreal to see so many familiar faces from his childhood, but also reassuring to Chris and his family.
More than just care
Asher spent the first month of his life at Seattle Children’s. When they finally went home, their normal as new parents was learning how to adjust to tubes and suctions.
“It was our normal,” said Kirstin. “We didn’t know any different.”
When Asher was about 3 months old, he underwent his first surgery at Seattle Children’s, a mandible distraction, to distract his lower jaw and help open up his airway. The small metal device lengthens the jawbone. Hopper performed the surgery.
The distraction surgery went well. Once the device was in place, Kirstin and Chris needed to turn the device daily, much like a clock, to slowly move Asher’s jaw forward. A couple months later, the family returned for a second surgery. Asher’s jaw was in a new position and the device needed to be removed. Hopper performed the second surgery as well.
“The distraction surgery was able to unlock Asher’s growth potential in his lower jaw,” said Hopper. “It allowed him to catch up and start to breathe normally. It is so gratifying when our team is able to offer this one surgical intervention to a struggling baby like Asher, and then to see him grow up into a healthy, happy 8-year-old boy with an exciting life in front of him.”
Chris underwent a similar procedure when he was a patient, and so it helped put the family at ease. They knew what to expect.
“I didn’t have a moment of fear while we were at Seattle Children’s,” said Kirstin. “I knew we were in good hands. They not only took care of us in physical ways, but they also made us feel comfortable and at ease. They even offered us massages while we were there.”
Growing up at Seattle Children’s
Asher’s last surgery occurred when he was 2 years old. It was to repair his cleft palate.
“We’ll never forget the people who cared for us,” said Kirstin.
According to Kirstin, Asher’s wounds aren’t visible anymore. He doesn’t need more surgeries, and he no longer has any issues with speech. He’s just like any other kid.
“People used to tell us, ‘I’m sorry,’ and I never could understand why,” said Kirstin. “We’re so grateful for the life we’ve been given. It makes you appreciate things more.”
Giving the gift of gratitude
Today, Asher is 8 years old and doing great. He loves Legos, video games, art and has a compassionate, empathetic heart.
“He wants to help people,” said Kirstin. “He cares so strongly for others.”
This year, Asher wanted to thank the people who cared so deeply for him while he was in the hospital, and so he wrote a hand-written letter to Hopper and the craniofacial team.
In his letter he writes:
Thank you for helping me. Thank you for helping all of us kids. You save us from a hard life.
The sweet letter is one of gratitude. It’s a feeling the family shares for the place they called home.
“When we look back, we only remember the good,” said Kirstin. “Seattle Children’s will always be a part of our family too.”