Today, for the first time, she inspects the device that will be surgically attached to her head for three months. Her family calls it her crown.
“We spoke a lot about her crown. What it’s going to do for her, how it’s going to help her breathe better, how it will be able to protect her eyes. We talked about the crown - it’s her halo - the crown she’s going to wear. We talked about the fact that they had to put it on and that she was going to have to go to the hospital,” said Kathrina’s dad, Paul.
“I don’t think she ever made the connection though that wearing the crown … protecting her eyes, helping her breathe better and the 12 hour surgery. As we kind of joke when she wakes up afterwards, she’s not going to be very happy with us when she’s made this whole connection of getting the crown on,” he said.
While Kathrina and her family prepare for the surgery the best they can, doctors at Seattle’s Children’s Hospital plot out the procedure, from start to finish; anticipating anything and everything that can go wrong.
“This surgery itself is one of the most difficult we do at the Craniofacial Center so on that scale it’s a 10 out of 10,” said Dr. Richard Hopper, Clinical Surgical Director of the Craniofacial Program at Seattle’s Children’s Hospital.
The amount of preparation is mind-boggling.
At a typical Monday morning meeting of the craniofacial team, 40 people from 20 different specialties discuss Kathrina’s case.
“A lot of that coordination had to happen before the surgery, with the pediatrician, with the anesthesiologists, with the nurses, with the social workers, with the child life specialist. The list goes on and on and on,” said Dr. Potter. “It’s amazing what they do both behind the scenes and with the patient to make an operation like this work.”
Because of the complex nature of these cases, and how rare the syndrome is, this surgery is also a rarity. Dr. Potter said he does five or six surgeries of this kind per year.
“Which is a large volume for this type of a surgery but it’s just so time intensive for the entire team that you need to see the patient so many times after the surgery, that you can only really concentrate on one child at a time,” he said.
Kathrina’s parents also play a major role in this procedure, participating in all of the decision-making. And it doesn’t end there. Once Kathrina goes home after the surgery, for the next three months they’ll be in charge of meticulously turning the screws on the distraction device that will slowly move her skull forward.
“What the parents are going to be doing is, starting two or three days after the surgery is using a screwdriver that fits over the end and they’ll be twisting this, one turn in the morning, one turn in the afternoon,” said Dr. Potter.
“I’ve tried to claim that I’m number six in line, after Tamara, her mum, my aunt, Matthew, Spencer and then me because I’m not so sure I’m going to be very good at turning the screws, but we’ll see how that goes,” said Paul.
In the evening before the surgery, Dr. Hopper mentally rehearses for the long day ahead.
“The operating room is prepared, everything is set up and ready to go from that point of view. What I’ll do is just the night before the surgery is go over everything in my mind, I like to get a 3-dimensional picture of what I’m doing, what I’ll be encountering.
Almost walking my way through the surgery step by step so that will probably be the last thing I do before we enter the operating room,” he said.
« Part 2: The Face of An Infant | » Part 4: A Long Day of Surgery