Hannah Schow dreamed of swimming with dolphins.
Stuck in a hospital bed after her 12th surgery, then 8-year-old Hannah had her jaw wired shut, couldn’t use her hearing aid and her eyes were swollen. She could barely see, talk or hear.
Her only means of communication was the white board her mother had given to her days before. She wrote messages looking for family members or asking to listen to music, so she could “dance” in bed.
Her room featured Hawaiian decorations. Her family was saving money for a trip: Hannah’s light at the end of the tunnel.
“It’s been amazing to be a witness to this human being that dealt with this pain and suffering,” Jennifer Schow said of her daughter, who is now 9 and starting a new phase of her life as a medical pioneer after innovative surgery at a Seattle hospital for children.
Hannah, of Post Falls, was born with Treacher Collins syndrome, a condition affecting 1 in 50,000 people that leaves facial bones underdeveloped. In Hannah’s case, her small jaw didn’t give her airway the room it needed. At just 2 weeks old, she had a tracheostomy to allow her to breathe. The tube made swimming impossible.
In April, after a first-of-its-kind procedure that began with last year’s surgery, which included wearing a brace on her head for months, Hannah’s airway finally opened.
The trach was closed. Hannah and her family, with help from Talk It Up TV fundraising, went to Hawaii.
She swam with those dolphins.
“I thought they would feel like all slippery and soft and stuff,” Hannah said. “But actually, they feel like a wet, rubbery tire. They’re kind of sticky.”
On June 16, Hannah got her trach removed. The whole family – parents Jennifer and Tracy Schow, and Hannah’s 15-year-old brother, Jacob – made the trip from Post Falls, as they have since Hannah was 1. Hannah was at Seattle Children’s hospital, formerly Children’s Hospital and Regional Medical Center.
The procedure to extend Hannah’s jaw and give her airway more room — conceived by Dr. Richard Hopper and his team — involved setting up a brace called a halo around Hannah’s head. For about a month, she stayed in the hospital for what is called the “turning” phase, in which her face was slowly rotated to expand her airway. That was followed by months with the brace holding Hannah’s face in its new position to heal.
The surgery replaced a less-effective and more-painful method performed on many children, including Hannah.
Because of the toll the previous operation took on the family, they almost turned down the groundbreaking method.
“He (Dr. Hopper) called us at home and said, ‘That one didn’t work, now it’s time to bring out the big guns,’ ” Jennifer Schow recalled. “But I told myself ‘No more,’ after the first one and all the pain she went through.”
But Jennifer and Tracy brought Hannah and Jacob together to discuss the surgery. The parents wanted everyone to be in agreement one way or another, and they all decided to move forward.
The procedure’s success is now documented, and more have been done. Hopper’s work has been honored nationally, and he is teaching surgeons around the world how to carry out a “subcranial rotation distraction.”
“My responsibility is to make things better in my career than they were at the beginning of my career,” said Hopper, surgical director of Seattle Children’s Craniofacial Center. “These kids really deserve and benefit from these surgeries. They’re very high-functioning kids. ... The trach is something that can really break a family apart all because of something around a kid’s neck.”
Hannah’s condition hasn’t frayed family ties, despite the challenges, including Jennifer missing work as a bank teller and Tracy taking time away from his job as director at a retirement center.
During Hannah’s lengthy hospital stays, Jacob flew to Seattle from Post Falls by himself to spend weekends with his family, going to school during the week. Even with that schedule, he managed a 3.9 GPA.
SOFTBALL, PIERCED EARS
Hannah’s 12-hour surgery was performed in August and the halo removed in late November. In addition to freeing her airway, Hopper was able to reconstruct parts of Hannah’s face, giving her something she’s always wanted: cheekbones.
With the extra protection for her eyes, Hannah can now play softball, which she’s long wanted to try. She can wear necklaces comfortably, do her hair differently and continue competing in gymnastics.
She’s still missing part of an ear, but she likes it that way, so long as her mom will eventually let her get them pierced.
“My mom won’t let me, but the doctors will,” she protests.
Strangers staring isn’t something that bothers her, either. It amuses her.
“People don’t realize that when they stare at me, they look really funny,” she told her mom recently after laughing at a gaping boy.
Moving forward, Hannah will require fewer major and less frequent surgeries.
In June, after her trach removal, the Schow family wore custom T-shirts, reading “She’s one tough cookie” on the front, with the hashtag “#teamhannah” on the back.
They usually wear them when she has surgery, but had a different incentive this time.
“We thought it was important to wear it because it was a victory,” Jennifer said as Hannah jumped out of her seat, into the air and pumped her fist.