Research provides a window to the future

The future is a tough thing to predict.

Now you may be thinking, “No kidding, Mr. Obvious. If we could predict the future …”

And you’d be right. But just because something is obvious doesn’t always mean it’s not worth mentioning. Likewise, just because something is hard to predict doesn’t mean you should give up.

The future is, after all, what medical research is all about. Sometimes it’s a future of

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The Children’s Research Building on the Adele Hall Campus of Children’s Mercy – Kansas City.

tomorrow. Sometimes many years down the road. Or decades. Children’s Mercy has a long history of looking toward the future. And, with the announcement last week of some major gifts to help us build more space for research and the people who will bring us the future, we’re not going to stop.

Dr. Katharine Richardson, one of our founders, was a firm believer in medical research, as I explained last time. There’s more to the story, as Paul Harvey used to say. Dr. Richardson was always looking to the future, knowing research was so very important. She was unrelenting in her quest. Just months before her death in 1933, she wrote:

“Our work, yours and mine, is to hold Mercy Hospital to its very best while we live, to keep fully up with all that’s decent – to somehow, some way, get a Research Laboratory for children’s diseases – to work as though we are going to stay forever and to realize that what is best will live on in the hearts of others.”

Those who followed Dr. Richardson worked tirelessly to carry out her wishes. (I particularly like the idea of pursuing “all that’s decent.”) As Children’s Mercy evolved, so did its work in medical research. And the evolution continues. One of the great steps forward on the way toward the exciting news last week about our Children’s Research Institute, occurred in the 1990s.

As explained in “For All Children Everywhere,” the Children’s Mercy history book:

One part of Katharine Richardson’s vision that she did not live to see fulfilled was a comprehensive research program to combat childhood disease. Although research had long been a part of Children’s Mercy, hospital leaders unveiled their first comprehensive and detailed Research Vision in 1995. It began to crystallize with the hiring of Dr. Ralph Kauffman on July 1 of that year.

Children’s Mercy declared its intent to build, staff and support a top-quality pediatric research program and stressed what it would mean for children. The scientists would work in state-of-the-art laboratories. With its connection to Children’s Mercy patients and families, the research program would offer unrivaled pediatric “bench to bedside” opportunities.

Dr. Kauffman was an established researcher in clinical pharmacology and immediately began to assemble a team of respected scientists to continue that work. Much research had been done on pharmaceuticals for adults, but little on most of the medications given to children. The Clinical Pharmacology lab Dr. Kauffman established at Children’s Mercy

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The Clinical Pharmacology lab at Children’s Mercy

in 1996 was one of only seven funded by the National Institutes of Health in an effort to close that gap.

In addition to Clinical Pharmacology, the Research Vision included genetics and “core laboratories,” defined as work with the best chance to be developed quickly and taken directly to clinicians and children.

Continuing the research effort, the second of the two towers resulting from the Centennial Campaign opened in 1999, named for philanthropists Paul and Betty Henson. Henson had led the telecommunications company that became Sprint. The new tower included not only the

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Inside the Clinical Research Unit at Children’s Mercy

largest pediatric clinical pharmacology lab in North America, but also a unique Clinical Research Unit containing patient rooms and equipment to carry out a variety of research studies in a safe setting. Research was taking its place as a part of the hospital’s foundation.

That same year, the hospital launched the Discovering Tomorrow campaign to support research. By 2001, under the leadership of Dee and Fred Lyons, Discovering Tomorrow reached its goal of $34 million.

Fred Lyons was an executive at Marion Merrell Dow, successor to a pharmaceutical firm, Marion Laboratories, that had been started in Kansas City by Ewing Marion Kauffman. Kauffman, best known by most Kansas Citians of the late 20th century for founding and owning the Kansas City Royals, also created the Kauffman Foundation. The foundation, headquartered near Kansas City’s Country Club Plaza, focuses on entrepreneurialism and education.

Lyons and another Marion executive, Ed Connelly, persuaded the Kauffman Foundation to endow the first of several research chairs at Children’s Mercy. Dr. Ralph Kauffman, no relation to Ewing Kauffman, became the occupant of the Marion Merrell Dow/Missouri Chair in Pediatric Medical Research. There is also a Marion chair in clinical pharmacology, and Fred and Dee Lyons personally endowed the Dee Lyons chair in pediatric genomic medicine.

The story doesn’t end there, of course. Children’s Mercy researchers have been involved in a wide variety of successful research over the years. Kidney disease. Cancer. Infectious diseases. Surgical techniques. Genomics. Heart disease. Diabetes. You get the picture.

And there is more on the horizon. Exactly where this is all going to lead is uncertain. Does that mean we stop? Does that mean we quit looking? I think it was Benjamin Franklin who said: “I did not fail, I just found 100 ways to do it wrong.” And then he found one that worked!

The future is unknown.

But it is bright. Hold on.

 

 

 

 

 

 

 

 

 

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Medical research is in, er, our DNA

It’s not always easy to get people excited about medical research. This is true even when we can point with absolute certainty to the benefits.

Remember polio? Many people can’t any more. And that’s because of a vaccine discovered through medical research — including some conducted by Herbert Wenner, MD, an infectious disease specialist who spent part of his career at Children’s Mercy.

So, we know it’s true — and undeniable — that research holds the key for a healthier future. But the key word here may be “future.” For a lot of people, “future” is a difficult concept to grasp. They like the here and now.

Well, here’s some “here and now” that’s all about the future.

Today, Children’s Mercy shared some big, big news. Two amazing and generous families

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Rendering of the Children’s Research Institute building on the Adele Hall Campus of Children’s Mercy, facing downtown Kansas City.

came together with gifts that will truly transform the future through medical research. You can read the details here. It’s gratifying, and humbling, to see the excitement this announcement generates.

The point I want to make here is that we at Children’s Mercy have been pounding the beat (or should I say “beakers?!”) for more medical research since even before our beginning in 1897.

So you see, research is an integral part of Children’s Mercy, along with clinical care and education. You can separate one from the other. To use an overused expression, it’s part of our DNA. And with the new Children’s Research Institute building that will change the skyline of Kansas City, it’s guaranteed that it will continue to be a major part of us well, well into the future.

I’ve been asked often, since I took up this Archives gig, what our founders would

1917 January
This edition of the Mercy Messenger from 1917 explains why Children’s Mercy wanted to establish a medical research laboratory: “Because we want to do the very best for every little creature that comes to us, and because we feel that out of the wonderful advantages of Mercy Hospital should come great discoveries for the actual prevention of the awful deformities which at present we can do little more than modify.”

think about how Children’s Mercy has grown up. I’m pretty confident they’d be proud of us. And I know 100 percent that Katharine Richardson, MD, one of those sisters, would be absolutely thrilled with our big announcement today.

Dr. Richardson was a firm believer and staunch supporter of research. As a medical student in Pennsylvania in the 1880s, she did her own research into the complications of pregnancy (probably one of the few fields open to women at the time). She even dared to reject the common practice of some doctors who ordered month of bed rest during pregnancy. Later, she sent a member of the Children’s Mercy staff overseas to learn more about the research into benefits of ultra-violet rays. One of the first doctors male doctors on the staff conducted ground-breaking research into congenital syphilis.

An excerpt from Chapter 3 of “For All Children Everywhere,” demonstrates the push for more medical research:

Despite all the advances and all the success, Katharine, as usual,  was not satisfied.

Chief among items on her to-do list was a research facility. Katharine knew that advances in medicine required research and that, if the research was done at Children’s Mercy, its own patients would benefit first. She also knew of bureaucratic and funding difficulties researchers faced at some of the established pediatric research centers in the eastern United States. She believed Children’s Mercy could attract talented researchers because of its large number of patients. Researchers needed children to test their theories.Despite all the advances and all the success, Katharine, as usual, was not satisfied.

“Before the scientists learned that your blood could be safely injected into my veins, but

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Katharine Richardson, MD

could not be safely put into Tom’s veins,” she wrote, “experiments were carried out for 15 years and eight thousand cases were held in evidence. Finally, the thing was done and transfusion of blood is now an everyday procedure.

“But there are yet hundreds of unconquered diseases. Those of children alone would fill the wards and balconies of such places as the Mercy, where last year 20,000 young people came for help.”

She made her plea for contributions to build a research laboratory and even declared: “Never in the world did Mercy want anything so much as it wants the Laboratory. Never in all its undertakings was there so great a possibility of good to be accomplished. And only money is lacking.”

The hospital already was involved in research, including the use of animals, which caused some uproar. The active anti-vivisection movement opposed using live animals in research, holding that the practice amounted to cruelty. In fact, Katharine pleaded with the operator of the hospital laboratory’s “animal house” to make sure the research subjects “be made just as comfortable as possible.”

The estate of Joseph Tyler Bird, former president of the Emery, Bird, Thayer Dry Goods

1927 ca_NurseTraining Addn
Nurse Hall, which opened in the 1920s, took the place of a research building on the Children’s Mercy campus on Independence Avenue in Northeast Kansas City. It is now part of Kansas City University of Medicine and Biosciences

Company, offered land in July 1924 just west of the Children’s Mercy building. A structure to be built on it would be “used solely for a laboratory for hospital research into the nature and causes of diseases of children and the best methods of treatment, alleviation, cure and prevention,” according to Central Governing Board minutes. The building was to serve as a perpetual memorial to Bird.

However, after fundraising for the structure began, the focus shifted. Nothing in hospital records provides an explanation, but on November 24, 1925, the contract with the Bird estate was amended. Instead of research, the land and the proposed building were to be used for no other purpose than the “housing, training and caring for nurses in connection with the operation of Mercy Hospital.”

Why the dramatic change? Perhaps Katharine understood that for research to be effective it needed a large patient population and that nurses were essential to attracting and maintaining that population. Student nurses were also a source of inexpensive labor; they worked for free in the hospital as part of their education. Or it could be simply that the hospital’s commitment to nursing, which stretched to its very beginning, won out in the competition for limited resources. It is known that the nurses’ home had long been a desire and Katharine had written that families of young women training to be nurses “demanded it.”

This was almost 100 years ago when the home for nurses became a priority over a building for medical research. But research never stopped being a part of our work or our dreams. I’ll have more about that next time.

But as the announcement today makes clear, we set our sights high. We dream big dreams at Children’s Mercy. And while they may not come true today, we never give up. Just like the scientists that work here today and into the future: we seek answers. We transform lives.

Just like we have been doing all these many years.

 

 

 

Say, how about a year-in-review?

Back in the day, when I was in the newspaper business (back in the day when there was a newspaper business), I never really appreciated the traditional “year in review” story compilations.

You know: The Top 10 lists. The Best of. The Most Memorable.

I considered them filler.

We did them — spoiler alert! — not because there are a great demand for it from the readers. Nope. And we didn’t do it because there was a great news value. How could there be? We were just repeating the news we had already reported.

No, we did it because there was no other news to report.

Traditional news sources — government offices, schools, the courts — tend to offer little in the way of news this time of year. Congress packs up and goes home. The kids are out of school. A lot of sports is hardly newsworthy, either. Does anybody really care about the Cheribundi Tart Cherry Bowl or the Bad Boys Mowers Gasparilla Bowl? (I am not making those up.)

There are also a lot of people on vacation this time of year. Fewer sources around to quote. Fewer reporters to write stories. Fewer days to get them written. So, we turned to something easy. We had, after all, lots and lots of pages to fill. Back in the day, of course, the newspapers grew even bigger during the holidays because of the advertisements. That meant even more pages to fill.

And so, the “year in review” was born.

As I grew older though, I got a different perspective. (About a lot of things, actually). In this case, I now recognize that it’s healthy to look back. To learn lessons. To see how far (or not-so-far) we have come. To remember. The good and the bad. And, to be grateful for all that was accomplished and for a chance to start fresh with the new year.

So with 2017 in the rear view mirror and a long, long path of 2018 staring us straight in the face, I took some time this week to look back at the “For All Children Everywhere” blog. And I offer, in pretty much random fashion, some of my favorite blog posts. They really are, in my rather biased opinion, worth reading again.

And don’t worry, there are plenty more stories where these came from. I’m really looking forward to telling more and more in 2018 and beyond.

  • One of the biggies for the year, of course, was when The Book was finally published. I wrote about the almost surreal experience of visiting the printing plant where the book was coming to life. It was a good day!
  • Earlier in the year, the two founders of Children’s Mercy, Alice Berry Graham and Katharine Berry Richardson, were inducted into the Starr Women’s Hall of Fame at the University of Missouri – Kansas City. I took a few minutes to remember my mom and the other strong women in our lives that make us all better.
  • One of the things I have grown passionate about during this historical odyssey is the preservation of great stories (and the various things that help us tell and remember them.) The work of Children’s Mercy with Wheatley Provident Hospital in the 1920s is one of those stories. And I am saddened that the building, at 18th and Forest is in danger of being torn down. It made me ask a question, with the help of a 30-year-old Kansas City Star editorial if Kansas City cares about its history.
  • One of the great surprises of the year happened one day when I happened to pick up my phone and “met” Marjorie Croy, a 90-something-year-old former hospital employee who has lots and lots of stories to tell. She even invited me onto the TV program at her retirement community to swap anecdotes.
  • My email also included a number of surprises. Including the story of a family from Utah whose home-away-from-home became Children’s Mercy 20 years ago and they just wanted to let me know how they were doing today.
  • The one blog post that received the most comments from people outside Children’s Mercy had to do with the question: how do science and spirituality co-exist? It led me on an interesting journey or discovery that went beyond the walls of Children’s Mercy.
  • And finally, I found time to wax poetic about the value of the history and the stories we tell. If we’re lucky, they will live on long after us.

If you have story ideas, let me know. That’s something else I learned from the newspaper business. News does not happen in a vacuum. We need people to tell us, “What’s up?!” Please do.

Happy New Year!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It takes a special kind of person

When I was doing an oral history interview for the Children’s Mercy history book, which carries the same name as this blog, our first CEO summed up the kind of people who work at children’s hospitals: they are cut from a different cloth, Dr. Marv Kolb told me.

I liked that. And not just because my wife is a quilter and seamstress and I’ve picked up more about fabric than any man not named Lauren, Versace, Armani or the like. It was just nice to be have someone else acknowledge it: there is something different here. And it’s the people.

Not that all the people at Children’s Mercy are the same. Heavens no! There is incredible, powerful diversity at work among the people who fill the jobs it takes to make this organization hum. But there is something in common that makes us tick. Something I felt soon after I started working here in 1994. Something that pulls us together.

I believe I uncovered part of what that is when I was working on the deep history of “For All Children Everywhere.”

As our two founders, the youngest and oldest of three girls born to Stephen and Harriett

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Stephen Berry: His obit described him as “a genial, companionable man, full of ideas, sometimes wrong and sometimes right.

in the 1850s, were growing up, they learned a lot from their rather outspoken father. He was the one who encouraged them to “always do something to help others.” That was likely one of the lessons that led them into medicine. But another of his sayings is more closely linked to them working for children:

“The mother who looks after her own children derives no special consideration,” said the man described in his obituary as having “peculiar characteristics” and being “often aggressive.” The key phrase followed:

“The truly charitable woman is big enough to help children other than her own.” 

Since neither of our founders, Alice Berry Graham, DDS, or Katharine Berry Richardson, MD, had children of her own, the children of Children’s Mercy became their charge. Their lives became the care of children other than their own. Charity – perhaps best defined as the voluntary giving of help to those in need — became their lives.

So, if we fast forward to the 21st Century and look for a common link among the people who work at Children’s Mercy today, perhaps this is it. Charity. Caring for children other than our own. Giving to those in need.

There is a common misconception that doctors and nurses turn to pediatrics because they don’t like working with adults. If that’s the case, it would backfire tremendously. You see, we not only have to work with kids who sometimes can’t tell us where it hurts or what they’ve been into, we also have to deal with sometimes overly anxious and protective adults — their parents. And their grandparents. We work for lots of grownups.

We’re not kidding when we say our care is about the whole family. We couldn’t do it without the parents. Even if we wanted to, most of them wouldn’t let us.

On a drive home from work the other day, the sky was overcast, it was a little chilly and it felt like rain, or worse. On the radio came a song by Cat Stevens made re-popular by the movie “Guardians of the Galaxy” (II, I think.) The song is “Father and Son.” A lyric: “Look at me: I’m old, but I’m happy.”

Maybe it was the cloudy day. Maybe it was the holidays which make me sentimental. But for whatever reason, I found myself thinking about my mom, who died earlier this year. The past few years, in failing health and living alone (despite multiple offers from her children for room in their homes) I don’t think she could have sung that line in the song. I’m not so sure she was happy. That made me sad, then and now. And so I wondered just what did make her happy?

It was children. She loved being surrounded by children. She had seven of her own. She was a Head Start teacher for decades and a first grade teacher before that. Was she the epitome of what Stephen Berry was talking about: the truly charitable woman?

I hadn’t thought about it until then, but I know she helped instill that love of helping children in me. And why, almost instantly upon walking in the doors of Children’s Mercy as a job applicant, I felt welcome and “at home.” And why, I jumped in head first and have spent the past couple decades trying new and different ways to tell the Children’s Mercy story. To do my part in taking care of “all children everywhere.”

It also gives me a new appreciation for the 8,000 other people who work at Children’s Mercy. Who give of themselves, in their own special ways, to help. Just like our donors and our volunteers. We do what we can. We are all responsible for patient care.

And the world, I am convinced, is better because of it.

Thanks, Mom, for leading me here.

 

 

Sometimes, though, a present is just right

Last week, after I wrote about “presence over presents” I got talking to some friends who have young children. The kiddos, of course, don’t get it.

“Yeah, right, dad,” one friend said he heard from his 8-year-old when he suggested his Christmas present might be a day of family togetherness. “But I get to bring my new DS along too, right?”

Sometimes, of course, presents are all called for. There are a variables to be considered:

  • Age of the recipient
  • The occasion
  • Your budget
  • Interests of the person receiving the gift

And more.

But you get the idea.

And so, as we were talking, my mind turned to “For All Children Everywhere,” the new final FRONT cover-cropChildren’s Mercy history book. And it occurred to me, this is the perfect gift! Let’s think about it:

  • Age of the recipient — well, the book is rated G so it’s good for all age groups. I tried to limit the number of medical terms. And there are lots and lots of pictures.
  • The occasion — A book is the perfect gift for every occasion. Everybody knows that.
  • Your budget. This can be a little tricky. But for a 224-page, full-color coffee-table book, $24.95 is a steal. And you can get it even cheaper if you’re a hospital employee.
  • Interests of the person receiving the gift — Let’s see: who doesn’t like stories of hope and joy and love and mercy? “For All Children Everywhere” features amazing characters, great stories of triumph over tragedy and an intermingling of local and national history along with the history of Children’s Mercy.

Honestly, I can’t think of a better gift this year. I know I may be a little biased in the matter. We’ve already sold thousands, but we have plenty more where that come from. And believe me, I’d be more than happy if we needed to order a second printing.

So … if you procrastinators out there haven’t done your shopping for the holidays yet, there is still time. You can find the book at the Children’s Mercy gift shops (Adele Hall Campus on Hospital Hill or Children’s Mercy Hospital – Kansas), through Amazon and through the Children’s Mercy Web site.

The later two options will involve shipping and you might not get the books by Christmas or New Year’s. But — good news — wouldn’t it be great to start the new year with a good book to curl up with next to the fire?

Go ahead, you deserve it. And so do people on your lists.

 

 

Presents? Or presence? Funny you ask

I received a lot of gifts from my mother, some more obvious than others. Just like all of us, I’m sure. This being the first Christmas since my mom died, I’ve been thinking a lot about her. And given this is the season of giving, I’ve been thinking about that, too.

Christmas when I was growing up, was a grand affair. My parents had seven children and most years, as least one grandmother would also be around the house during the holidays. As my older brothers grew up and got married, that added to the chairs around the massive dinner table. Under the tree were piles and piles of colorfully wrapped gifts (using the Sunday comics was a favorite of mine.) Most of the presents were practical (socks, underwear, chocolate-covered cherries), but there were occasional extravagances (a drum set one year, a five-speed bike another.)

So sure, I remember some of the material items. But those are not the presents from presencemy mom that I cherish most during the holidays and throughout the years.

Maybe it was her upbringing during the Great Depression, but my mom was not much for material things. When asked what she wanted for Christmas (or a birthday or any other holiday) she would almost always say, “Your presence is the only present I want.”

I liked that. Especially as she grew older, I grew to appreciate it even more. And I tried to honor that. After she died last spring, I tried to calculate how many trips I had made between Kansas City and her home in Iowa since I moved down here in 1979. And how many snowstorms I weathered to make sure and be there to hear the old German music box turn the tree and serenade us with its tinkling?

My mom was not the only one with the presence vs. presents philosophy, of course. I have a good friend who tells me each year he vows to his wife to “be present” more than he usually is. To him, that means leaving the cell phones in the other room when they have dinner or sit down to watch TV and leaving work at work.

The philosophy of presence over presents was in the media this week, too, with reports of a study published this summer about showed that most people prefer the small acts of kindness over the grandiose. From NPR:

During the holiday season, many of us feel pressure to find our loved ones the “perfect” gift. Why? Because gift-giving has long been considered a prime way to express love. However, recent research suggests that gestures don’t need to be large or have a hefty price tag to feel meaningful.

The study, published this summer in The Journal of Social and Personal Relationships, suggests that small acts of kindness, not grand overtures, make people feel most loved and supported.

“Our research found that micro-moments of positivity, like a kind word, cuddling with a child, or receiving compassion make people feel most loved,” says Dr. Zita Oravecz, a professor in human development and family studies at Pennsylvania State University and one of the study’s researchers.

This all got me thinking, of course, about one of the founders of Children’s Mercy,

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A Christmas party with special guests brightened the days in 1950s Children’s Mercy.

Katharine Berry Richardson. She could have used a little more “presence” in her life. An early draft of “For All Children Everywhere” put it this way:

All the praise and all the smiling children and grateful families could not stave off loneliness. Maybe it was her relentless drive, or perhaps her off-putting manner, but Katharine had few friends. …

“So engrossed in Mercy was Katharine Richardson that she had nothing else in life,” wrote Roger Swanson in the history of the hospital published in 1961. “Essentially she was a woman of deep loneliness when away from Mercy. In a rare confidence, she once complained of a fear of the holidays – Thanksgiving and Christmas – because of her aloneness, of no place to go and nothing to do.”

During that alone time, when there were no children to care for, Katharine attended to one of her hobbies: gardening, basket weaving and woodworking. While the flowers may be gone, they certainly offered a splash of beauty in the often ugly lives of the children she served. Examples of her woodworking have survived, including at least one set of drawers she built that is still used in an office at the hospital. One report suggested she cultivated the hobbies in part to give her something to talk about in social circles. She worried that she was not as well read as others because she could not afford much of a personal library. “Please don’t mind if I don’t talk very much,” she would say. “Just let me sit and listen.”

Re-reading this reminds me of one of my favorite authors, Anne Tyler. I don’t remember in which book – I’ve read or listened to many — but one of her quirky characters had a tendency to invite home for the holidays what her family called “strays,” people mom just met who had no where else to go.

I wonder if anyone in Kansas City invited Katharine Richardson over for Christmas dinner? They might have thought she was too busy or too important to accept. But did anyone even bother to ask?

And how about all of us? Is there someone on your neighborhood or community or even your own family who might be alone this holiday season. Can you offer “presence over presents?”

Can you “Give Joy” or “Give Hope” or “Give Love?”

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The lobby at Children’s Mercy Hospital on the Adele Hall Campus, is decorated for the holidays.

 

OK, let someone else tell a story for once

It’s been a bit of a problem to catch a breath these past couple of weeks.

Holidays you know. There’s decorating to do (and I don’t do much.) There are shopping lists to make. (Ditto.) Special foods to prepare. (I love to eat though I hardly need the peanut brittle and fudge, thankyouverymuch.)

And, of course, there are parties and dinners and lunches and … sometimes I wish we could just spread these “let’s get together” times throughout the calendar, instead of concentrating them in six weeks near the end of the year. I know, I know: Call me Scrooge.

Another reason I’m feeling rushed these days is because I have half a dozen speaking engagements on the books over the next couple months. I’m not complaining. This is something I want to do. I need to do it. And I like to do it. But it takes time.

Since the book was published, I’ve only given talks to groups of hospital employees (and that one TV program at the retirement community.) They are one kind of audience. Now, I am beginning to speak outside, spreading the gospel of Children’s Mercy further. I’ll tell you more about that when I get a couple more talks under my belt.

Today, I want you to hear from someone else.

When I was searching for stories about patients to include in “For All Children Everywhere,” I turned to a variety of sources. There were newspaper accounts. There were memoirs of former employees. There were personal experiences of the families that I was honored to work. And there were the stories of friends who also happened to be part of the Children’s Mercy family. That’s the story behind what follows. (And published on Page 146.) I happen to think, as our current advertising campaigns suggests, this story “gives hope, gives joy, gives mercy.”

You get what you expect

The genetics counselor handed my wife a business card. It belonged to Dr. Fred Hall, head of the Spina Bifida Clinic at Children’s Mercy Hospital.

 “I know this is difficult news. You should call Dr. Hall. He can help you understand what to expect.”

Nick at NICU
Nick in the neonatal intensive care unit

We were just given a diagnosis that our unborn son had Spina Bifida. In 1989, pre-natal testing was new, but a blood test flagged that something might be wrong with our first child. A level II ultrasound confirmed that there was an opening in the lumbar region of his spine. We left the doctor’s office for what  was to be an emotional afternoon. We went home and cried. We contemplated our future with a child whose disability we knew nothing about. Kim called Fred Hall’s office. He could meet with us later that afternoon.

Dr. Hall’s calm demeanor minimized our uncontrolled emotions. I was beginning to think his business card should read “Zen Master.” We told him, again getting upset, that we didn’t know anything about Spina Bifida, and the doctor we consulted told us there was a possibility of severe brain damage. Our son may never recognize his parents.

“I see a lot of children with spina bifida,” Dr. Hall said. “And those children are bright,

Nick on horseback
Nick on horseback: No China doll here

compete academically, play sports and have full lives. If you treat any child like a China doll they are going to become a China doll. The children I see aren’t like that. You get what you expect” We walked out of Dr. Hall’s office with confidence that we could manage the challenges in front of us.

A few months later, Eric Nicholas was born on the coldest day in Kansas City history. Fred Hall was in the delivery room. Later that day, Nick was transported to Children’s Mercy Hospital to have a shunt inserted and closure surgery on his back. That was Nick’s first trip to Children’s Mercy.  Over the years, there would be many others, for visits to the spina bifida clinic and a handful of surgeries over the next 18 years. Along the way, we worked with fabulous doctors and staff like Dr. Ann Modrison, urologist Dr.

Nick Ratliff
Nick Ratliff

John Patrick Murphy, Dr. Nigel Price, who performed an extraordinary 17-hour back surgery when Nick was a teenager. Carol Hafeman was the nurse at the Spina Bifida Clinic during the 18 years he went there. Over the years, I left a number messages for
Carol about one concern or another. They were all answered promptly and cheerfully. No question too foolish or indelicate.

Nick graduated from high school and from Children’s Mercy. He went on to graduate from KU, get a driver’s license, and has a full-time job. Thanks Children’s Mercy.

Jon Ratliff, Nick’s dad