The day was Christmas Eve, the year was 2003 and the Ketelhohns were resting and watching a movie in their home near Milwaukee, Wisconsin. It was an idyllic evening, but their youngest daughter, 8-month-old, Kate, had a slight fever.
It was the type of mundane malady that many young children experience countless times throughout their development. There was no reason to worry, until there was.
“On Christmas day we went out for festivities with our extended family, but Kate just didn’t seem herself,” her mother, Julie recalls. “Her fever seemed to be going up and down like a yo-yo. We called our pediatrician. We talked and decided that if she wasn’t getting better, we’d bring her in the next day.”
The next day Kate’s lethargic behavior was still persisting. The Ketelhohns brought her into their physician.
“They took a look at her and they couldn’t really find anything out of the ordinary. They decided to do a blood test just in case,” Julie says. “It was the decision that saved Kate’s life.”
That evening the Ketelhohns received a call at their home. The message: stop what you’re doing and get Kate to the emergency room immediately.
What Happens When Everything Falls Apart?
“It would be difficult to overstate just how much changed for us over the next several hours,” Julie says. “We sent our other two girls to our neighbor’s house and drove to our local ER. They told us that Kate had a blood infection.”
What happened next can only be described as a parent's worst nightmare.
Doctors told the Ketelhohns that Kate had a Strep A bacterial blood infection and when her immune system tried to fight the infection, it went into overdrive, causing a condition called sepsis.
The Ketelhohns could see the tangible symptoms of sepsis-like fever, difficulty breathing and increased heart rate, but inside her body, Kate’s organs were failing.
“We got into the ER and Kate was screaming and crying inconsolably. We were just trying to keep her calm,” Julie says. “They were trying to give her antibiotics and fluids, but her veins had collapsed and they couldn’t get the IVs in initially. They were finally successful, but Kate had developed a rash of tiny brown dots up and down her legs. Nothing was working.”
A real risk of sepsis is that it can lead to a life-threatening drop in blood pressure. Most often, this is referred to as septic shock.
“Kate was declining so quickly, all we could do was watch,” her father, Charlie says.
“At one point one of her providers told us that it was time to get the chaplain, that it was time to say goodbye. I remember looking at her and screaming, crying, we weren’t going to let her go. I think in a lot of these situations everything gets distilled down to one moment. We were right there at the brink and then, miraculously, Kate started to rebound.”
In the coming days it became clear that Kate would survive, but for the Ketelhohns, their journey was just beginning. Blood clotting during sepsis reduces blood flow to the extremities, and if blood can’t get to the tissue in the limbs, this can cause the tissue to die.
“Two weeks in—maybe even sooner than that—her left hand lost blood flow, then it spread up part of her arm. The same happened in her toes, parts of her feet and the tips of her fingers on her right hand,” Julie says. “There was no other decision to be made. A month later in January, the portions of Kate’s limbs that couldn’t be saved were amputated.”
Looking for Answers
Kate and her family were discharged from the hospital in March 2003 after nearly four months of medical turmoil. Shaken but unyielding in the face of the challenges the future might bring, one month later they celebrated Kate’s first birthday.
“I’m not going to sugarcoat it and make it sound like it wasn’t an awful thing that happened to us,” Charlie says. “But Kate was still with us, and that was the most important thing. We would do whatever it took to make sure she had every opportunity to live the life that she deserves.”
As Kate grew, the Ketelhohns spent quite a bit of time in doctors’ offices. The main issue: what to do about her legs?
Leaving out the fact that part of her left arm and portions of her right hand were missing, Kate’s development in her upper body was perfectly normal. However, the lack of blood flow from septic shock had damaged the growth plates in the bones in her legs, causing atypical development.
“We saw multiple specialists near our home in Milwaukee as well as in Chicago,” Charlie says.
“They all had an aura of polite ignorance. No one knew what to do for Kate. Eventually, they recommended amputating Kate’s legs below the knee and being fitted for prostheses. We were at a point where it’s like, we’ve endured this tragedy and we’ve been forced to make decisions that no parent should ever have to make. All throughout, we tried to save as much of our daughter’s body as possible, but these additional amputations were a bridge too far. We thought, we might end up there (with amputations), but we didn’t want to start there. It was right around that time that we heard about a Dr. Dahl at Gillette Children’s in Minnesota.”
Mark Dahl, MD and his team at Gillette Children’s Specialty Healthcare are international leaders in limb-lengthening and deformity correction and care for patients from all over the world, but if not for a serendipitous encounter, the Ketelhohns may never have been sent his way.
“My wife and I occasionally facilitate retreats with our congregation,” Charlie says. “During these retreats you talk about a lot of personal things. I was speaking about Kate and the issues we were going through regarding her medical care, and a woman in the group stood up and said, have you heard of Mark Dahl? She had a similar, though less severe, condition as Kate when she was born, but there she was, up and walking around. We decided that this was definitely a doctor we needed to see.”
The Ketelhohns soon obtained an appointment and traveled to Minnesota.
"The first thing that stood out to us about Gillette was just how kind the staff was. They didn’t give Kate’s missing limbs a second look. They saw her instead,” Julie says.
“Dr. Dahl was the same way. Some of the doctors in the past had been kind of stymied and stumped, but he was really positive. He spent more than two hours examining Kate and looking at her X-rays. Then he said the words I won’t forget, ‘I can do this, we can fix this. We can get her walking.’ I just burst out crying. After months of trying to find help for Kate, hearing that was almost unbelievable.”
However, Dahl also explained that the road would be a long one.
“The treatment plan I laid out would require numerous procedures throughout the course of Kate’s development. It would require a great deal of commitment and perseverance,” Dahl says. “I could tell that Charlie and Julie were incredibly united as a couple and as a family, and through the hundreds of hours I’ve now spent with them through the years, I’ve always been impressed by their ability to make adjustments.”
"Our first meeting with Dr. Dahl was very interesting in retrospect,” Charlie says.
“We were interviewing him to see if he could provide any answers for Kate. He was interviewing us to see if we were strong enough to go through this long and arduous solution. Dr. Dahl had no doubt he could help Kate straighten and lengthen her legs with a series of surgeries over multiple years. His confidence gave us the confidence to move forward.”
Kate’s treatment plan would be a carefully orchestrated process.
First, Dahl performed surgery to straighten Kate’s ankles so that they would heal together. Next, he straightened her knees, followed by a limb-lengthening process known as distraction osteogenesis. Bit by bit, day by day and procedure by procedure, Kate’s legs were able to grow and develop properly.
“Looking back on it now, I’m not sure how we got through all that,” Julie says. “There were certainly many times that it wasn’t a lot of fun. But as a parent, you do what you can for your children; it’s just what you do.”
Left to right: Kate's legs post and pre-surgery
A Treatment Process Nearing Its End
Today, Kate is 15 years old. Though her treatment is ongoing, she is currently finishing her final round of leg-lengthening using an internal fixator called a PRECICE IM Nail. To date, her legs have been lengthened nearly seven inches.
Just as importantly, with the help of prosthetics in her shoes, Kate walks just fine. She uses a prosthetic for her left arm to help herself navigate the world—and navigate it she does. Armed with a big smile and outgoing personality, she’s active in her local theater and recently received the 2018 Positively Milwaukee Award for Inspiring Youth.
Sure, there are some things she has to do differently, but given the tools she needs, it’s clear that there’s very little she can’t do.
“It’s really remarkable,” Julie says.
“This could’ve gone quite differently. We almost lost Kate and now we have a 15-year-old who wants to go to Harvard and become a doctor. We’re so grateful to Dr. Dahl and the medical staff at Gillette for the help that they have given us over the years. Kate really looks up to Dr. Dahl and sees him as a friend. He was there for us when we didn’t have a path to move forward. He provided that for us. Though we are eager to complete Kate’s treatment, it will also be bittersweet.
Kate and Dr. Dahl following a recent appointment