Wednesday, March 5, 2014

Reconnection: A Tale With A Twist for Child Life Month at All Children's Hospital

Twenty-four years ago, Carla Householder was a frightened, 13-year-old patient at All Children's Hospital, getting ready to have a biopsy performed on a spinal tumor.

Kristin Maier was working as a young specialist in the Child Life Department she now runs at All Children’s.

The two instantly bonded, and their friendship deepened as Carla was soon diagnosed with cancer. She underwent a series of three difficult surgeries, followed by grueling chemotherapy treatment over the next four years.

They talked endlessly, as Kristin encouraged Carla to stay strong and keep fighting.

They made each other laugh with their similarly playful styles – like the day Carla surprised everyone by tossing off her wig with a grin because it made her head too darn hot.

They cried together during the hard times, when uncertainty weighed on Carla’s mind, or when she learned that she likely would never be able to have a baby due to the harsh effects of the cancer and surgeries. And they cried again when Carla finally beat the cancer and parted ways with her dear pal from Child Life.

Once or twice over the years, their paths crossed. But for the most part, they moved on with their own busy lives as one decade rolled into the next.

Then, last  Friday, Kristin was walking in a hallway near the patient transfer elevators, reading an email on her cellphone.

It was a moment that could just as easily have slipped into the mundane flow of the day. But at the very same instant, a hospital visitor named Rhonda Householder happened to catch a glimpse of the familiar woman from Child Life who had once been such a godsend to her daughter, Carla.

“Kristin, is that you?!” Rhonda called out. Kristin recognized the voice and beamed as she saw Rhonda approaching her. They shared a warm embrace but there was no time for small talk. Rhonda grabbed Kristin’s hand and led her around the corner. There, sitting in a wheelchair – eight months into a pregnancy that was not supposed to be possible – Carla looked up in disbelief.

 “She saw Kristin and just started bawling,” Rhonda recalled. “And then all three of us were bawling.”

Carla had begun to have problems late in her pregnancy and was on her way to Bayfront Baby Place, housed on the third floor of All Children’s, to be induced a month early. The fears she’d felt only seconds earlier disappeared amid the glow of an improbable reunion, created by a simple twist of fate.

"Amazing," Maier reflected.

“How unbelievable that I would run into her on that day, at that moment,” Carla added. “When I saw her, it made me feel like everything was going to be okay.”

And, indeed, it was. On Monday, Carla gave birth to a healthy, beautiful baby girl named Isabelle. Kristin, of course, couldn’t wait to visit her former patient and infant daughter – two lives reconnected by a new one on just another day inside All Children’s.


Child Life Director Kristin Maier, day old Isabelle and new mom Carla Householder.

Monday, December 23, 2013

10 Stories About People, Places and Things That Helped Make All Children's Special in 2013

As 2013 rolls to a close, this seems like a perfect time to reflect on the individuals, programs and events that helped make All Children’s special throughout the year.

Those stories are told on a regular basis in the feature known as “Faces and Places,” giving ACH employees and the general public a closer look at uplifting aspects of hospital life. Some unfolded in the spotlight in 2013; others took place in less visible corners of the hospital or, in one case, bubbled up from the pages of history with a little-known link to a baseball immortal.

But the common denominator is that all underscored the caring spirit of All Children’s – from  the doctors, nurses and staff inside the building to the compassion of the people on the outside, moved to lend a helping hand in an array of powerful ways.

We rang out 2012 with a New Year’s Eve story about a remarkable baby named Sammy Carden, who earned the nickname “Nails” for the toughness he displayed as ACH Heart Institute doctors saved his life during a harrowing surgery.

While still in his mother’s womb, Sammy was diagnosed at ACH with an extremely rare condition: single ventricle with criss-cross atrioventricular connections. Rosie and Craig had no idea what the problem was when they made an appointment to speak with All Children’s cardiologist Kathryn Nardell, M.D. in 2012, reeling from the crushing recommendation by doctors not affiliated with All Children’s that the pregnancy be terminated.

Sammy today at 18 months
But Dr. Nardell spent four hours with the Cardens, reviewing echocardiogram images and drawing pictures of Sammy’s heart and anticipated surgeries. Rosie remembers saying, 'Just give it to me straight: We're going to be prepared and if his quality of life is such that he can't be here, then he can't be here. But I need you to tell me.' And she said, 'We can fix it.' “

That they did in a series of operations performed by Dr. Jeffrey Jacobs and Dr. James Quintessenza, including one to kick off the New Year on Jan. 3, 2013. Sammy came through with flying colors. And, with his G-Tube now removed, he’s become a thriving little boy.

“Sammy is an eating monster,” Rosie said. “He’s running around like a champion and talking, and is really, truly the happiest child I’ve ever met. We’ve been so fortunate.”

So have countless others who have been helped in some manner by the hospital. This year, that included more visits than ever from the Tampa Bay Rays, who signed a sponsorship agreement with ACH. Rookie pitcher Chris Archer even showed up twice on his own (even on the morning of a playoff game), while Bucs rookies made their traditional tour and there was even a surprise drop-in by “Special K” of the Harlem Globetrotters.

Here’s a look at 10 stories, in chronological order, that shine a light on the heart of All Children’s.



Jan. 10
Spiderman at ACHSpider-Man Thrills Patients and Washes a Few Windows
The crew from High Rise Window Cleaning in Clearwater provided patients with a thrill when they showed up to wash windows dressed as Spidey. The unusual sight had kids and parents turning their heads – and even made a splash on the NBC Nightly News.







April 1

Julia Ruth Stevens & Babe RuthThe Hospital That Babe Ruth Helped Build

The Sultan of Swat had a well-known soft spot for kids in need, having spent his childhood in a Baltimore orphanage. And back when his New York Yankees spent spring training in St. Petersburg, the Babe made a generous donation to help build the hospital that would one day become All Children’s. The story came to our attention this past spring, and we talked to Ruth's granddaughter, 96-year-old Julia Stevens, about her father’s kind gesture.





April 16

Dr. Allison Messina and Dr. Gregory HaleA Hair "Razing" Experience for a Good Cause

A pair of All Children’s doctors – Gregory Hale, M.D. and Allison Messina, M.D. – parted with their locks one evening with members of the Tampa Bay Lightning to help raise funds to help fight pediatric cancer. The event created a big buzz indeed for pediatric cancer awareness.







May 1

Dr. Paul ColombaniDr. Colombani: A New Hand That Shapes ACH Leadership, An Old Hand That Saved a U.S. President

As a senior resident at George Washington Hospital in 1981, Dr. Paul Colombani found himself thrown into currents of history – playing a vital role in helping save the then-president Ronald Reagan as he clung to life following an assassination attempt. Now his leadership as Chair of Pediatric Surgery helps guide All Children’s.





June 4

Kelly TyrrellMusic Therapist Kelly Tyrrell Brings a Tuneful Healing Touch to ACH Patients

With a wide array of instruments, songs and techniques, Kelly Tyrrell helps patients of all ages – from newborns to late teens – get through hard times with a finely tuned approach to healing through music.






Sept. 10

Jackie Sayegh Duggan: A Life Tragically Taken on 9/11 Enhances Young Lives at All Children’s

The Sayegh Family of New York was devastated by the tragic loss of daughter/sister Jackie Sayegh Duggan in the 9/11 attacks on the World Trade Center. But her loving spirit lives on in a multiple ways at All Children’s, thanks to a donation in her family made by the family after putting down roots in St. Petersburg recently.






Sept. 18

Welcome Guests Greet Patients in All Children's Rooms: Towel Animals

The housekeeping staff of All Children’s has been lifting spirits of patients in a unique manner: by mastering the fine art of creating towel animals, and putting them in hospital rooms to brighten the day for children and parents.







Oct. 16

All Children's Homecoming Dance Has All the Right Moves For Kids, Families and Friends

It was a night to remember for patients – a gala homecoming dance that allowed them to leave behind their pain and uncertainty and just be kids for a change. The event, masterminded by the Child Life Department, drew massive support from vendors in the community to create a magical evening.




Nov. 22

Anthony Napolitano, M.D. – A Leader Who Knows the Heartbeat of All Children’s Hospital

He played a key role in the growth of All Children’s Hospital’s neonatal intensive care unit and continues to shape ACH’s course as Chair of the Department of Pediatric Medicine. The journey started for Dr. Napolitano as a New Jersey teen, growing up in a family of first-responders.


Dec. 10

Beads of Courage: A Program that Chronicles the Bravery of Patients Comes to All Children's

A unique, worldwide program has come to All Children’s, giving kids a tangible way to “tell” the story of what they’ve endured so courageously. It’s a hit with patients, families and staff alike.

Tuesday, December 10, 2013

Beads of Courage: A Program that Chronicles the Bravery of Patients Comes to All Children's


The plastic containers arrived two months ago. Each holds all manner of shiny beads, carefully sorted by shape, color and design. And each holds a powerful, personal story to be told now by the patients of All Children’s Hospital.

In their own way, the beads are no different than medals earned by soldiers on the battlefield and displayed proudly on uniforms. Every small object has its own special meaning – standing for an experienced endured, a fight faced, an ordeal overcome.

They are Beads of Courage, a thriving therapeutic program for children in 170 hospitals worldwide, with All Children’s recently joining its ranks. In this holiday season of hope and giving, the beads are playing an especially fitting role: helping lift the spirits of many kids in need of a boost – thanks to the determination of the Child Life Department and generous support of donors.

The program recognizes that on any given day, young patients can face a stressful barrage of tests, shots, procedures, surgeries, pain and uncertainty. But at the same time, those frightening and difficult experiences can become a source of pride and success for children and family members – a way of visually conveying their individual journeys and conquests to anyone they meet.

It is a way of soothing the struggle, knowing that every difficult moment can be rewarded by a corresponding bead. And one by one, strung together in ever-growing strands, the beads convey a powerful, nonverbal tale of bravery on a very real battlefield for each child.

“So many of the kids who come to All Children’s Hospital have life-threatening, chronic illnesses that they deal with day in and day out,” said Child Life director Kristin Maier. “It’s very different than a typical childhood. And Beads of Courage is a way to capture that story and to build their legacy.”

If a child spends a night in the hospital, they get a bead for that. If they have a blood draw, undergo a procedure, or travel a long distance to get to the hospital, they receive a bead signifying each event. Some children wear their strands around their necks, some hang them from their IV poles or drape them across the walls of the room.

“For parents, it’s a way of saying, ‘Look what my child has gone through,’ – it’s very endearing and moving to them,” Maier added. “To children, it’s a sense of pride, like a banner: ‘Look at what I’ve done!’ ”

Due to the expense of the program, it has been initiated incrementally: first with Cystic Fibrosis patients, next with patients dealing with cancer and blood disorders, and then with children on the cardiology floor. But the plan is to eventually make it available to the entire patient population at All Children’s. And judging from the reaction of patients, family members and even the caregivers, that’s no surprise.

Just consider 8-year-old CF patient Scott Hosfield, who sat on his bed in the Pediatric Intensive Care Unit counting his latest haul of beads with Child Life specialist Katie McGinnis. His stay began at All Children’s seven weeks earlier and Scott became the first patient to be enrolled in Beads of Courage at the hospital.

All of his daily respiratory treatments, blood draws  from insulin injections, and experiences related to his care had pushed his total over the 800-bead mark on a recent morning – good for a special bead to signify that impressive total. His favorite: the yellow “Minion” bead modeled after the characters in the movie Despicable Me.

“Where we at Mom?” he asks mother Heather Hosfield as the counting continues. 847…848…849.

“I think it has helped him a lot in doing all his treatments and pokes he gets,” she said. “It’s given him something to look forward to for all this pain and suffering he has to go through while he’s here. Before we did a treatment and that was it. So I think it gives it something to say, ‘Oh yes, I get a bead now.’ He has all these beads and everybody tells him how crazy it is that he has this many but that it’s awesome that he does. It gives him something to look forward and it allows me to see him smile.”

There are smiles up and down the hall outside Scott’s door as McGinnis helps him stretch his long strand of beads past a group of admiring nurses and some 20 feet from his room. It was McGinnis who first suggested to Maier and the Child Life staff that the Beads of Courage program would be worth bringing to All Children’s. She had heard of it five years earlier at the annual Child Life conference while working for another hospital. That inspired her to help bring it there, and she immediately saw the impact it had on patients and parents.

One story always stays with her: how a young girl with a brain tumor had collected the longest of bead strands during treatment that spanned 18 months. She had been out of school the entire time, and when she returned McGinnis accompanied her with her seemingly unending length of beads. The girl was reintroduced in the gymnasium before more than 500 classmates, and she used the thousand-plus beads as a tool to tell her story without words.

“She held one strand of the beads – the students and teachers all parted – and I walked through the gymnasium with the other strand and it stretched all the way across to the other end of the gym. There was a collective gasp: teachers were crying, kids were crying. And then everybody just burst into applause. So the moment went from this patient feeling awkward and scared about going back to school to being so proud of all that she had done. Her peers were just amazed and rallied around her.”

McGinnis has observed another kind of magic in Beads of Courage – the bond it reinforces between patients and caregivers, hospital staff and families.

“If a nurse has to come in and do a blood draw, or access their port, that can be something they don’t enjoy doing,” she said. “But with Beads of Courage, it’s really awesome because the nurses and other caregivers are the ones who actually give the patients the beads. … If a nurse has to access a port, she can follow up right after that and give the patient a black bead, which represents a poke, and say, ‘I’m really sorry that I had to poke you, I know that wasn’t fun. I’m so proud of you – you were so brave.’ ”

For 17-year-old Madeline Jones, Beads of Courage has been a constant source of encouragement and pride for eight years. As a child, she was hospitalized in Pittsburgh Children’s Hospital with hypertrophic cardiomyopathy, a condition in which the heart muscle becomes thick and makes it difficult to pump out the blood. Her hospital had instituted the Beads of Courage program and it gave Madeline an immediate boost.

“I thought it was really cool to be able to see everything I went through,” she said. “Sometimes, you think it’s just one blood draw, but it turns into 100. It makes a difference because you can tell people everything you’ve been through and they can also see it at the same time.”

Madeline has been through a lot, indeed. She recently underwent a heart transplant at All Children’s, and a large, blue heart-shaped bead on her long strand prominently signifies that experience. She and her parents, Gina and Keith, were understandably delighted when All Children’s added Beads of Courage, which meant Madeline could continue adding to the collection she’d started in Pittsburgh, and meticulously fill out the accompanying journal that describes each new bead she earns.

“She loves this program, and we love it,” Gina said. “She wears the beads like a badge of honor. I remember when we were up in Pittsburgh, and I’d go past the other rooms, and we would look at their strands and go, ‘Wow – and now we’re one of those wows.”

 “It gives the kids something else to focus on,” Keith added. “This distracts them, and they can now focus on something else when they see Child Life representative come, or the nurse come with a fist-full of beads. They get excited.”

The beads are not your run-of-the-mill, crafts store variety, either. They are high-quality, glass-based objects that are both durable and aesthetic. That’s one reason the Beads of Courage is an expensive program to incorporate, it’s why it took roughly two years for the Child Life department to add it to their many patient-friendly endeavors.

“We knew we would have to get philanthropic support for it,” Maier explained. “So we wrote a proposal to the Northeast Exchange Club, the local chapter, and shared the story of how Beads of Courage can make a difference in the lives of our patients. They embraced it and they funded the whole start-up, which was near $20,000.”

The All Children’s Foundation obtained additional sources of donor support, including a generous gift from the Sayegh Family, whose daughter Jackie lost her life in the World Trade Center terrorist attack on Sept. 11, 2001.

“They picked up an additional year of funding, so we’re good for two years,” Maier said. ”The beads are finite, but the procedures and the kids are not. So we’re going to need ongoing funding for the program.”

Meanwhile, Maier and her staff are enlisting volunteers from within the hospital and the community to help create special “Bead Bags” with eye-catching patterns to store and transport each child’s bead collection. (Instructions on how to do so, along with how to obtain an official logo to be sewn onto each bag, can be obtained on http://beadsofcourage.org).

Inside each one, the story of a child’s courageous fight is ready to unfold for the world to see.

Faces and Places” is a regular column written by Strategic Communications Editor Dave Scheiber highlighting those people, places and things that make All Children’s Hospital special. Video by Mollie Scheiber.