Why Katelyn Can’t Swallow

In light of the healthcare arguments in Congress and across the country, I thought I’d reprint a piece I wrote in June, 2004. Since then a number of readers have asked about my niece’s daughter, Katelyn, so what follows is the original piece, and an update.

Shortly after my previous rant about rising medical costs, I received an update from my niece Karen about her daughter, Katelyn, a 12-year-old who had undergone surgery for a brain tumor.

This occurred after years of taking Katelyn to doctor after doctor, who dismissed her headaches and stomach problems as mere childhood neurosis. Finally a doctor gave her an MRI and discovered a brain tumor at the base of her brainstem – apparently one of the worst locations for a tumor.

The surgery was successful as brain surgeries go, but it left Kaitelyn needing massive amounts of therapy, particularly “swallow” therapy because she can’t eat without a feeding tube.

Katelyn was in Boston’s Children’s Memorial Hospital for about two weeks after the surgery, as doctors fought to stabilize her blood pressure. Then the hospital released her to a rehab center to continue her therapy.

The entire family was grateful Karen is a full-time teacher, and therefore has insurance. Her husband, Jim, has a small roofing business and like many in the craft industry, can’t afford the cost of premiums.

Then we received this email from Karen:

“So, after four days of rehab, insurance has decided that Katelyn no longer needs to be here because she can ‘walk and talk’ – never mind that she can’t swallow or eat. We are being discharged on Saturday to go home. The rehab here is in the process of finding an intensive swallow/speech, five-day-a-week program for us closer to home. We will also get physical therapy one-two days a week for awhile, that is until insurance once again deems it’s not necessary for her any longer.

“Insurance has also informed us that they will cover 80% of the cost of the feeding machine (which, by the way, Katie NEEDS in order to survive), but won’t cover the bags, syringes, and FOOD for the machine. Nice, huh?? It seems the food is not a necessity??????? She can’t swallow, therefore she can’t eat. If she can’t eat, she can’t survive. How can she eat? With the feeding machine, of course, but let’s not supply the food to go along with it.

“Can you tell I’m a little frustrated??”

Sign of the times.

Your first reaction is probably the same as mine: How could that insurance company be so cruel?

But if you are responsible for the bottom line of your business, you know the answer. If the company doesn’t watch its costs, it will go out of business, and then no one will have insurance. And if the company doesn’t make a profit, stockholders will scream bloody murder. (By the way, if you have a 401K retirement plan, it’s possible that you’re one of those stockholders.)

So the insurance company has to draw the line somewhere, and it decided that if a little girl can’t swallow after all the money the company paid for her surgery, well, that’s her problem.

I think this is an issue we may all face, if we haven’t faced it already. Someone we love will require expensive, available treatment and our insurance company, if we’re lucky enough to have one, will say no.

Dr. Lewis Thomas wrote in his book, Lives of a Cell, how medicine has changed. As a boy Thomas would often accompany his father, a country doctor, on the family horse-drawn buggy as he made house calls. Decades later, Thomas became dean of the New York University Medical School and president of the Memorial Sloan-Kettering Cancer Center, and he won a National Book Award for his essays on medicine.

Two things struck me about Thomas’ book: First, before the discovery of antibiotics, doctors did not cure many illnesses. They had wonderful bedside manners because they couldn’t offer their patients much else. As science’s ability to actually relieve patients’ suffering improved, medicine became colder, more impersonal. Machines replaced the consoling words and comforting hands. But those machines are expensive.

Thomas also wrote about the money in medicine. His father was not wealthy; comfortable, yes, but no more so than the town banker, judge, or lawyer. Medicine was not an automatic ticket to riches.

I wonder what he would think if he heard what my wife, Barbara, heard as she was beginning to go under anesthesia for simple arthroscopic knee surgery a few years ago. The surgeon was complaining to a nurse that he needed to buy a bigger yacht.

That surgeon is no different than any of us. We all want more – more profits for our businesses, more return on our 401K, and of course more health care. It’s human nature to complain, “This is not enough.”

I suppose it comes down to philosophy, or economics, but I don’t care what you call it. I just want little Katelyn to be able to swallow.

Update, 2009

From Katelyn’s mother, Karen:

Katelyn started her freshman year at The College of Saint Rose in Albany, NY in September. She intends to study Early Childhood Education with a minor in math.

 After surgery, she had swallow therapy for about a year, and then moved into speech therapy for an additional three years. She never regained full use of her throat/swallowing due to the damage to her brain stem. She now has almost a complete swallow, but she cannot eat chunkier or drier foods because she can’t push the food down adequately enough on the right side of her mouth. Her tongue deviates to the right and tremors frequently due to atrophy. She has slight articulation problems, especially when she’s fatigued. 

For several years after surgery, Katie came down with pneumonia three or four times a year because she couldn’t move the mucus efficiently enough. She also used a CPAP machine nightly for sleep apnea; but a tonsillectomy/adenoidectomy done last winter seems to have cured her of the recurring pneumonia and obstructive apnea. Now, she just deals with mild central apneas, but not enough to need to wear the sleep machine on a nightly basis (as a new college student with a roommate, boy, was she thankful for that!!). 

Her blood pressure continues to be a battle for her and will be that way for the rest of her life. She takes medication 3x a day (plus more, if needed) to help regulate it. Even with the medicine, her blood pressure can get very low. Recent readings for her have been 49/32, 69/42, and 72/59 (with a heart rate of 130 – which is a whole other issue!). Just by changing body positions (for example, from sitting to standing), her blood pressure drops immediately, and often without her feeling it; it can take as long as five minutes to re-regulate itself. She’s got a “bank” of strategies to use when/if she does feel dizzy (open and close her toes into a clenched position, tighten her leg muscles, squat down briefly, etc.) to help stave off a black out. 

I think her biggest personal challenge has been to accept the fact that she can no longer participate in many sports activities. She used to be an avid swimmer on a swim team and ran track on a team as well. Now, any type of physical activity she does needs to be non-competitive and closely monitored due to her significant drops in blood pressure. She was also a bit of a wild woman when it came to roller coaster rides; she used to love the ones that turned her upside down or dropped her from high altitudes. But those days are gone now too because of her blood pressure. 

This summer, she was one of 236 college students across the nation who received a scholarship from the Pediatric Brain Tumor Foundation this year. It’s a phenomenal, non-profit group whose mission is to raise money for pediatric brain tumor research and to provide a higher quality of life and support for brain tumor patients and their families.

Katelyn was one of 11 pediatric brain tumor survivors honored at the Hudson Valley Ride For Kids in Central Valley, NY this past August 2nd. She and the other local pediatric brain tumor survivors were given a police-escorted motorcycle ride throughout the mountain roads of New York, and then a Celebration of Life and lunch was provided as well.

As horrible as Katie’s story is, there are so many others out there just as bad or worse. 

Through it all, Katelyn has remained remarkably strong in body, mind, and spirit. This whole experience has reaffirmed to me that there really is a God, and that God doesn’t give you things you can’t handle. I see this daily through Katelyn, who handles her ups and downs with such strength and grace.

xxx