From the day she was born Hannah Schow has had more than her share of obstacles. Breathing was number one.
Seattle Children’s Hospital took over her care at seven months of age and now Hannah is 9 years old is living life with passion and so much more.
“If there’s a beat in the elevator, she’ll start dancing,” says her dad Tracy Schow.
Songs on TV, the radio or a cell phone playing music, anything with a beat and you’ll find Hannah dancing, but she now has, even more, reason to tap her toe.
“Today we’re able to leave the hospital trach free,” says Hannah’s mother, Jennifer Schow.
Trach is short for tracheostomy - a plastic tube that allows people to breathe when their airway is blocked.
“Its kinda cool, I don’t really know what to say about it cause I’ve had it ever since I was 2 weeks old,” says Hannah.
Nine years of breathing through a plastic tube, her whole lifetime, “kinda cool” could be an understatement. But Hannah has been through a lot and getting to this point is just another day in her not so ordinary life.
“She has an amazing spirit, she’s very resilient and happy go lucky, and that helped us in moving forward and trusting what Dr. Hopper had come up with the new surgery she had had in August,” says Jennifer.
“It’s a huge deal for Hannah; it’s a surgery that she was the very first patient to have it done. To breathe through Hannah’s nose, this area right below her brain was completely squished shut,” says Dr. Richard Hopper the Surgical Director of the Cranial Facial Center at Seattle Children’s Hospital.
“Hannah has a condition called Treacher Collins Syndrome. It’s a relatively rare condition that appears in one in 50,000 individuals,” says Dr. Michael L. Cunningham, Division Chief of Craniofacial Medicine at Seattle Children’s Hospital.
Kids born with Treacher Collins syndrome have a major issue; they’re jaw tends to be extremely small. Which can cause obstruction of the airway.
”Frustrated by trying to treat children like Hannah with Treacher Collins and severe airway diseases and just not being able to improve the airway with traditional techniques, so we had to do something different,” says Dr. Hopper.
Different led Dr. Hopper, Dr. Cunningham and the entire Craniofacial Team at Seattle Children’s Hospital to invent an entirely new procedure which is a game changer for the treatment of children with airway diseases and Treacher Collins Syndrome. Hannah just happened to be the very first.
“It made us nervous, it was scary, it was a situation that you couldn’t research to be able to get information on it. So we had to put our trust in the doctors, and we had to put our trust in what was going to happen to be able to get to this point,” says Tracy Schow, Hannah’s father.
So what the surgery entailed was to make a very careful break of her face all the way beneath the skull base, right through her lower jaw and upper jaw and eye sockets to make her entire face one moving segment. It was no longer attached to her skull,” says Dr. Hopper.
A hinge was then installed high on the bridge of the nose. That allowed the entire facial bone structure to pivot forward.
“So now the entire face of Hannah’s would be able to swing forward based on this hinge and open up that entire airway. That opens up that entire skull base in a way that we haven’t done before, opening up that airway and letting her breathe normally for the first time.
“The surgery was very successful, and Dr. Hopper is the architect of this procedure. We’ve only performed it on a handful of children, but it looks like the procedure we’ll use going forward,” says Dr. Cunningham.
"Team Hannah" as the family calls itself played a big part in Hannah’s success. Her brother Jacob who she relies on for support is a key player.
“My mom said that she looks up to me, but actually, I look up to her because she’s very strong,” says Jacob Schow, Hannah’s brother.
”It can make people less nervous since I was pretty much the first one to have it done. I can pretty much go through without stopping,” says Hannah.
“Even knowing that she went through a hard time that we all went through a hard time as a family it will help others,” says Jennifer.
Next up for Team Hannah is to get her feeding tube removed. She has been able to eat solid food and looks forward to a regular diet and the enjoyment of everyday life. Including lots of dancing.