Kristin Paulson is pretty and sweet. She’s also modest and optimistic. She was a dancer. She was homecoming queen at Mankato East High School last fall. She graduated in the spring, and she’ll be a freshman at Minnesota State University this fall.
On the surface, she has everything going for her. And she’d probably tell you that, in many ways, she’s lucky.
For others who hear her story, however, her good fortune is quite literally skin deep. Underneath lies a whole host of medical problems — problems so rare, doctors believe Kristin’s case is unique.
Just to name a few, Kristin — “Tinner” to her family and friends — has a pacemaker for her heart. She has multiple spleens — more than 10 of them — and due to complications, they can’t be removed.
She also has heterotaxy syndrome, which means some of her organs formed on the opposite side of her body. She has problems with her liver, colon and small intestines, which doctors fear might twist and threaten her life. The list goes on and on.
While the number of medical problems Kristin is dealing with has been a shock, Kristin’s mom, Cindy, has also been surprised by the way her 18-year-old daughter is handling it all. No self-pity. No complaints. Not even when she sat wide awake all night in a hospital with a tube down her throat. Not even when she was so sick, the slightest movement made her gag and vomit.
“She’s never complained,” Cindy said. “She’s a very strong person. I could not have done what she has done.”
Unique from birth
Cindy says Kristin’s medical anomalies began at birth when she had a short, 10-inch umbilical cord — just the first example of what has made Kristin so unique.
When Kristin was in third grade, Cindy started noticing her daughter was fatigued a lot and had a gray color to her skin at times. Doctors found a heart murmur, which led them to also find a hole in Kristin’s heart.
During surgery to close the hole, doctors discovered all of the veins in Kristin’s body were tiny and abnormal, and she had just one artery supplying blood to her lower body rather than the normal multiples. That means she gets tired much easier due to decreased circulation.
Doctors also linked her cardiac abnormalities to a rare medical condition called polysplenia, which means multiple spleens, although they didn’t know how many she had at the time.
Four out of 1 million live births have polysplenia, Cindy said, adding that many children die due to additional heart complications and infections that often come with the disorder.
The Paulsons are thankful that Kristin has a fully functional immune system that helped keep her strong.
The Paulsons waited as long as they could, but when Kristin was in 10th grade she had to have a pacemaker installed. A normal heart rate ranges from 60 to 100 beats per minute. At times, Kristin’s was 21 beats per minute. Such a low heart rate is very hard on the body.
“It was so hard to exercise,” Kristin said. But it also wasn’t in her nature to stop trying.
“Her phy-ed teacher said, ‘I hope it’s all right I used Kristin as an example in class today,’” Cindy said. “‘I said, ‘Kristin here with the heart condition is working harder than everybody else.’”
After the pacemaker surgery in 2008, Kristin received the diagnosis of heterotaxy syndrome, as well as abnormalities with large veins that carry blood to the heart. With plans for Kristin to go to college in Milwaukee, doctors recommended she have a CT scan of her upper and lower abdomen in May of this year.
They found more than 10 spleens with tortuous splenic veins, which Cindy describes as being like varicose veins. Her liver wasn’t positioned normally, her intestines were rotated and twisted, and there was a severe risk her bowel would twist and become obstructed, a condition that is life-threatening.
Doctors recommended surgery, involving releasing bands between her colon and abdominal wall so her intestines and colon could relax in her abdomen.
Because of complications from Kristin’s multiple spleens and her heart troubles, the surgery was a risk.
A very hard day
Kristin went into surgery July 12 at St. Marys Hospital in Rochester for what was supposed to be a three-hour laparoscopic surgery.
The team of six surgeons weren’t expecting to find such distorted and unusual anatomy, including a cocoon of tissue encapsulating the bowel, which affects less than 1 percent of the population. They also found a Meckel’s diverticulum — a bulge of tissue from birth on the small intestine, which about 2 percent of the population has.
Surgeons also found a hernia new to medical science on the first section of the small intestine and colon, which was twisted around an artery.
“(The hernia) will probably be named after the doctor who found it,” Cindy said.
Surgery lasted eight hours, and they had to open her abdomen.
Every patient is assigned a number posted in the waiting room. When the number is green, the patient is in surgery. Blue means surgery is complete. Gray means the patient is in recovery.
For eight hours, the Paulsons stared at their daughter’s green number, praying she was OK.
When a surgeon came walking down the hall, head down, looking defeated and reluctant to approach, Cindy and Troy, Kristin’s dad, hoped he hadn’t just come from working on their daughter. He had.
The surgeon started explaining all the complications, that her intestines had been outside her body on the table for hours, and that they couldn’t fix her bowel completely.
“It was just awful,” Cindy said. “I said, ‘Just wait a minute. Is she OK?’”
Kristin was OK. But because her intestines had been manipulated for so long and to such an extent, they didn’t function at all for nine days, which worried doctors and her family. She didn’t eat for 14 days. She had IVs pumping fluids into her body, so much that she gained 30 pounds. And worst of all, the surgeons weren’t even able to fix the problem.
A month later, Kristin still is in the process of healing. But mentally, she’s as healthy as she’s always been. Never one to complain or feel sorry for herself. Not about the big stuff, anyway.
Cindy remembers the first thing her daughter said when she was brought to her room after surgery.
“She said, ‘Did I miss ‘The Bachelorette’?” Cindy said.
At any point, Kristin’s bowel could twist or obstruct, and she might need another surgery. Doctors aren’t sure what complications might come from her distorted anatomy in the future. Diabetes might be a result of issues with her pancreas, which only partially developed, but they don’t know that for sure, or when to look out for it.
“They can’t really give me any specifics,” Kristin said. “They’re just taking it day by day.”
She also had to change plans for college, opting to live at home with her parents and attend MSU rather than go away to school. She was really hoping to meet new people her freshman year, and she hopes forgoing the dorm experience won’t change that.
Still, Kristin doesn’t dwell on the negatives.
“My whole health thing is just ongoing,” she said, which has helped her take the bad news a piece at a time and in stride. “I’m thinking about it now because I’m trying to heal.”
“But (her health) is never really something she’s focused on,” Cindy said.
Kristin also doesn’t think about whether or not her condition will shorten her life.
“That’s not really how I am,” she said. “I don’t think I’ve ever been like that.”
A mother can’t help but worry, however.
“As a parent, that’s always a concern,” she said.
But Cindy tries to remember the words Kristin said to her in the midst of all her struggle.
“God only gives us the challenges we can handle.”