Pediatric surgeon tells little Connor’s story of hope

Written by Dr. Ana Ruzic, a pediatric surgeon at Kentucky Children’s Hospital.

Let me tell you a true story of hope. It may be difficult to read, but I promise you nowhere as difficult as being its main character. This is Connor’s story.

Nearly one year ago, Connor Stacy went home from the Kentucky Children’s Hospital Neonatal Intensive Care Unit, or NICU, snuggled in his mom’s arms, too small to fit in his elf hat but nearly three times as big as the day he was born. Just recently, his mom sent me a photo of Connor wearing that famous hat. He is getting close to walking and speaking. To anyone who took care of him in his six-month NICU stay, he is the definition of hope.

Connor Stacy and his elf hat.

A premature birth, then more complications

I met Connor and his family in August 2015. They had already lived through a hailstorm of trauma, experiencing a premature birth and the subsequent marathon of the neonatal ICU.

For a NICU family, meeting a surgeon is never an easy feat. While some of these consults involve more benign needs, such as reliable IV access or an expected hernia that can wait for a repair, all too often they indicate a need for an emergent operation. Along with our neonatologists, my three surgery colleagues and I carry the privilege and the burden of meeting NICU families on a sudden, unexpected and very bad day. And on the day I met him, Connor went from well to critically ill in a matter of hours.

In the morning, he was eating and growing, and by the early afternoon, he was in advanced stages of necrotizing enterocolitis (NEC), a severe intestinal infection often seen in premature neonates. By the early evening, he was in multi-system organ failure. More than half of babies with NEC do not make it, despite aggressive management and all the advancements of modern medicine.

Treatment for Connor

Our first step was to remove the damaged portions of Connor’s small intestine. Connor weighed only 1,200 grams and was so fragile we could not move him to the operating room. Instead, we did the operation in the NICU. In the course of the following five days, he underwent three major operations. And somewhere in the midst of it all, his kidneys stopped making urine.

When the kidneys fail, the body fills up with toxins and fluid and their function is replaced by dialysis. The dialysis continues until the renal function recovers or further

treatment becomes futile. Futility is the antithesis of hope, but we have the responsibility to our families, our patients and each other to recognize that point of no return.

I didn’t know if we would reach that with Connor, other than to tell his parents we would “keep going until we were no longer doing treatments for him, but to him.” That is not my quote, by the way.  It was taught to me by Dr. Joseph Iocono, some years ago when I was his resident. He is now my boss, my colleague and my mentor.

Thinking outside the box

Connor needed dialysis, but unfortunately, we don’t have a great way to dialyze 1,200-gram babies. With Connor, our care team had to improvise, think outside of the box and believe in something far greater than each of us individually: science, divinity, neither or both. Above all, we had to rely on faith in each other.

As joined as we are by this story, we are all different in the ways we approach medicine and patient care. We are guided by our own stories, each as different as the next. We do not always agree and that is exactly what Connor needed – for us to challenge one another, our biases and our previous outcomes. This is also the story of true multidisciplinary medicine, which takes the impossible and makes it the standard of care.

With the help of Dr. Aftab Chisti and Dr. John Raus, we devised an inventive technique to sustain Connor’s life by providing manual dialysis for Connor for two weeks until his renal function spontaneously recovered.

Connor’s team

In those two weeks Crystal, Mary, Becca, Kim, Lindsey, and a number of other nurses performed manual dialysis every 15-30 minutes for 12-hour shifts at the time.

And while the physicians came and went, Genine and Heather, Connor’s neonatal nurse practitioners, kept the care consistent and in order for the rest of us. For months to follow, Genine and Heather encouraged Connor’s family, nursed his wounds, protected his development, loved him and bonded with him the way only mothers do, before having to let him go. This is their story, as much as it is Connor’s.

By the time he was discharged home, Connor crossed paths with 11 neonatologists, four pediatric surgeons, 15 neonatal nurse practitioners and PAs, two nephrologists, nine surgery residents, and an array of respiratory, music, speech, occupational and physical therapists, each an essential piece of his puzzle.

I cannot begin to touch on the village it took to get him home. Nor can I begin to describe the dignity, compassion and kindness with which his parents, Chrissy and Dustin, graced each of us, despite living through a battle none of us will ever completely appreciate – that of a NICU parent. This, above all, is their story.

Those of us who take care of neonates carry within us a healthy dose of realism, which we drown with cautious optimism every time we walk into the hospital. Hope is that intangible quality of pediatric physicians, in whose shadow we walk each and every day, careful not to share it too much or risk losing credibility. We hold it close nonetheless. It is our guiding light, held brighter by the courage of our little patients and their families, breathing life in the very walls that surround our children’s hospital.

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UK football coach Mark Stoops and players paid a visit to the Kentucky Children's Hospital.

Pediatric patients get a holiday visit from Coach Stoops, UK football players

UK football coach Mark Stoops and players from the team spread holiday cheer to kids at Kentucky Children’s Hospital on Tuesday.

Check it out!

Ashley Rapske's passion for baking flows into her work. She bakes and sometimes cooks for staff at Kentucky Children's Hospital several times a week.

Child Life worker’s ‘baking therapy’ spreads sweetness to KCH staff

It’s no one’s birthday, anniversary or retirement party, but Child Life specialist Ashley Rapske has a container filled with fresh-baked morsels free for the taking at Kentucky Children’s Hospital.

Rapske has worked in the KCH Child Life Program for the past three years, and most days of the week she brings cookies, bars, cakes and other baked treats with her to work.

Child Life specialists and assistants are in constant contact with patients and families, providing emotional support, procedural preparation and coordinating developmental and normative activities for children receiving inpatient treatment. They encounter hurting children and heartbreaking cases on a daily basis. Maintaining interests outside the hospital helps workers manage the stressful nature of their job.

When Rapske was interviewed for the job three years ago, her future supervisor wanted to know how she coped with stress.

“I said, ‘Oh, I like to bake,’” she said.

‘Baking therapy’ brings people together

A lifelong practitioner of “baking therapy,” Rapske finds joy and gratification in sharing the products from her oven. Her off-hours baking habit has turned into a ritual for sweets-seekers on staff at KCH. KCH nurses, doctors, therapists, maintenance staff, and Child Life specialists and assistants often stop by the Child Life Department to sample her homemade cookies, cakes, bars and snacks. She also cooks a crock-pot meal for her Child Life coworkers every week. Rapske said homemade pastries improve moods, encourage hardworking staff to take a break and bring people together during difficult times.

“I think it’s a little thing that can make a big difference,” Rapske said. “I’ve had nurses who are feeling down come in, and you can see their smile. They are like, ‘I do feel better. Thank you.’ ”

Rapske remembers how her treats brought staff together after the sudden loss of a patient on the floor. She said many staff members gathered around her batch of cookies to commiserate and work through the pain of the loss.

“We said, ‘Let’s be grateful that we get to go home at night,’” Rapske said. “It helped put things in perspective. We had a smile and a laugh, and it kind of got us over the hump.”

Sweet tooth? ‘Stop by the Child Life office’

Rapske’s recipes are often more extravagant than a standard plate of sugar cookies or tray of brownies. She dabbles with a variety of ingredients and plants unexpected surprises in her confections, such as stuffing caramel candies in peanut butter cookies. After Halloween, she repurposed leftover candy by baking a batch of Twix brownies. She also replicates nostalgic desserts, such as oatmeal cream pies, vowing the commercial version doesn’t compete with her homemade cookie. But her most popular recipe is the classic chocolate chip cookie.

“The word is out that if you need something good, stop by the Child Life office,” Rapske said.

Lessons from her mother

For Rapske, caring for children and baking were always two activities paired together. She started baking with her mother, a stay-at-home mom who ran a daycare in their home. Rapske learned recipes from her mom, but wasn’t always an expert baker. She started out by replicating her mother’s banana bread recipe. Now, she’s so familiar with her recipes that she can eyeball measurements and tinker with ingredients.

At the same time, she developed a passion for caring for children. Rapske found baking was an activity in which she could easily engage young kids. She has enjoyed showing her nieces and nephews how to crack an egg and sprinkle salt in a mixing bowl.

“They are so proud to show off their creation and what they helped to make,” Rapske said. “It’s a very sensory experience.”

A form of healthcare

As an amateur baker, Rapske can’t share her baked goods with children in the hospital, but she spreads sweetness to other children battling illness or living in poverty through a volunteer role. Every Tuesday, Rapske reports to Maxwell Christian Church to bake a custom cake for a child’s birthday for the nonprofit Sweet Blessings. She receives a description of the child’s interests and decorates the birthday cake based on the child’s wishes. Her creative cakes have ranged from Frozen princesses and superheroes to Lego constructions.

When asked why she bakes for everyone even strangers Rapske has a simple reply: baking is her way of showing others she cares.

“It’s healthcare you have to take care of yourself and help people take care of themselves too.”


Next steps:

  • UK Child Life helps provide play opportunities for sick children and their families. Learn more our program.
  • When your child is sick or hurt, you want the best care possible. That’s exactly what you get at Kentucky Children’s Hospital. Learn more about KCH.
Country artist Ben Rue visited a diabetes education class at the Barnstable Brown Diabetes Center

Country music star Ben Rue visits kids at Barnstable Brown Diabetes Center

Kids in the pediatric diabetes education class at the UK Barnstable Brown Diabetes Center welcomed a special classmate earlier this week.

Country music artist Ben Rue, who was in Lexington for the Acoustic Jam to benefit the UK Kentucky Children’s Hospital, stopped by the diabetes education class to talk with children recently diagnosed with Type 1 diabetes.

Ben was diagnosed with Type 1 diabetes when he was 14. He told the kids that living with a chronic illness can be difficult, but it doesn’t have to define their lives.

“Kids with Type 1 diabetes need to know that just because you have this condition doesn’t mean that it holds you back from being or doing whatever you want to do,” he said.

Watch highlights from Ben’s visit below, including an acoustic performance for the kids at Barnstable Brown.


Next steps:

  • Learn more about the Barnstable Brown Diabetes Center, which provides medical management in every area of diabetes as well as education support to assist in lifestyle changes.
  • Interested in donating to the Kentucky Children’s Hospital? Visit Give to KCH to learn more about ways you support our mission.
Dr. Scottie Day

Meet pediatrician Scottie Day: ‘Caring for the sickest of the sick’

Making the RoundsDr. Scottie Day, associate chief medical officer at Kentucky Children’s Hospital, is the featured physician in this week’s Making the RoundsA graduate of the UK College of Medicine, Dr. Day worked in Indiana, Ohio and Hawaii before returning to Lexington in 2011. He now works at KCH in the Pediatric Intensive Care Unit (PICU).

When did you know you wanted to be a physician?

As a child growing up in Eastern Kentucky, I always wanted to be a physician. And I held true to that. I think that I always felt like I wanted to be in some type of servant position.

Why did you choose pediatrics as your specialty?

I originally couldn’t decide on a specialty and wanted to take care of children and adults, which led me to do my residency in internal medicine and pediatrics. However, as I went through residency, I realized I wanted to take care of the sickest of sick of children.

Working in the PICU gave me a chance to take care of small babies all the way up to older teenagers and even some young adults with childhood diseases. It took my internal medicine-pediatrics resident training and allowed me to use this knowledge to take care of the most critically ill. There is nothing more rewarding.

What makes you want to come to work every day?

As a PICU physician, each morning I do what I love most: take care of the sickest children and their families with an amazing team and fulfill my calling and talents that I have been blessed with. The stresses are high, but the rewards are priceless.

How would your friends describe you? 

Easygoing, friendly, talkative. Conscientious about others’ feelings, wanting to do every single thing, never saying no.

Do you have any guilty musical pleasures?

I listen to all music. I play music myself; I’ve played since I was 5 years old. Piano, guitar, mandolin, ukulele, drums. I listen to every single type of music.

What is your favorite aspect about living in Lexington? 

It’s got the small-town community feel, but it still has some big city pleasures. I’m originally from Kentucky, and when I moved back to Lexington, I liked being in a college town. I feel like there’s a huge sense of community here.


Watch our video interview with Dr. Scottie Day, where he talks about his patient care philosophy.


Next Steps

  • Experts at the KCH PICU take care of critically ill children with a range of medical issues, including burns, trauma injuries, and cardiovascular and neurological concerns. Learn more about our state-of-the-art services.
  • When your child is sick or hurt, you want the best care possible. That’s exactly what you get at Kentucky Children’s Hospital. Learn more about KCH.
KCH pediatrician Dr. Asha Shenoi has traveled around the world training health care providers to instruct courses on systematic pediatric critical care.

Dr. Asha Shenoi takes child-saving practices to developing countries

The first 24 hours of treatment determine the outcome of a child diagnosed with a critical illness or injury.

When healthcare practitioners respond with systematic approaches, children suffering from critical conditions such as shock or respiratory distress are more likely to survive. But physicians in resource-scarce countries often lack the advanced training to integrate such effective approaches.

The traveling pediatrician

That’s where Kentucky Children’s Hospital pediatrician Dr. Asha Shenoi comes in. She has traveled around the world training healthcare providers to teach classes on systematic pediatric critical care. Shenoi, who volunteers her time on behalf of the World Pediatric Intensive and Critical Care Foundation, is one of very few pediatric critical care specialists in the world designated by the organization to train physicians in developing or mid- to low-income countries on programmatic approaches to pediatric critical care. She is approved to administer the Pediatric BASIC critical care course – a foundational course for improving outcomes for critically ill and injured children worldwide.

Since joining the program in 2012, Shenoi has worked with pediatricians to adapt critical care training to specific parts of the world. She conducts a one-week training, which includes modules on running a skills station and coordinating simulations, and returns to the country intermittently over the next two to three years to update local instructors on current treatment methods. Instructors then host trainings for local and regional healthcare providers, bringing systematic critical care methods to otherwise unreached territories. The overarching goal of the program is to provide a sustainable system for improving critical care in disparate regions of the world.

Saving children across the globe

In October, Shenoi trained physicians at the National Children’s Hospital in Vietnam. She has conducted seven courses in four countries, including India, Vietnam and the West Indies, adapting each training to reflect the country’s native language and cultural considerations. The trainings emphasize dynamics and coordination in performing critical care procedures.

Shenoi learned about the program through her mentor when she was completing a fellowship at Emory University. Since then, she has become one of five certified trainers in the U.S. She has purchased every plane ticket herself, and the institutions where she is training provide accommodations. A native of India, Shenoi aspires to change the course of treatment for disadvantaged children whose lives might be saved through the kind of systematic critical care interventions she teaches.

“The majority of childhood deaths in these settings result from preventable and reversible causes; in the end, often what saves a child life is early recognition and systematic intervention,” Shenoi said. “Unfortunately, training opportunities in critical care in resource-limited settings are scarce, and we aim to train the trainers in these settings in developing locally relevant systematic critical care interventions.”


Next steps:

  • UK HealthCare is proud to be home to the Makenna David Pediatric Emergency Center, one of the only dedicated children’s emergency centers in the state, and the only one serving Central and Eastern Kentucky.
  • Would you know what to do if your child suffered a serious illness or injury? Check our tips now so you’re prepared if you need them.
5 ways to prevent preterm birth

5 ways to prevent preterm birth

Written by Diana Frankenburger, the childbirth education coordinator for UK HealthCare.

Prematurity and its complications are the leading cause of death in children younger than 5 in the world today. Infants born before 37 weeks gestation have more complications than full-term babies, including problems with feeding and digestion, vision and hearing, and breathing.

Premature report card

Each November, the March of Dimes publishes a Premature Birth Report Card, which grades the U.S. and each state on prematurity rates for the previous year. The goal is to be at 8.1 percent, an objective set by the Healthy People 2020 initiative, a science-based, 10-year program to improve the health of all Americans.

This year, the U.S. has a rate of 9.6 percent, earning a C letter grade. Kentucky’s rate is 10.8 percent, which unfortunately gives our state a D.

Tips to prevent preterm birth

While some risks for premature birth cannot be avoided, there are things you can do to help prevent a preterm birth. Here are a few tips:

  1. Stop smoking, or cut down to less than a half-pack per day. Smoking contributes to preterm birth, and a baby who lives in a house with smokers is also 3.5 times more likely to die of sudden infant death syndrome than a baby who doesn’t.
  2. Avoid alcohol and drugs.
  3. Get prenatal care. Learn more about prenatal care at UK Women’s Health OB-GYN.
  4. Practice oral hygiene and see your dentist. Oral infections can lead to infections that can cause preterm labor.
  5. Practice stress reduction. Be aware of how you are handling stress and get sufficient exercise and rest to help get you ready for your new family member.

Delivering at full term will help your baby be healthier, stronger and avoid the complications that come with preterm birth.


Next steps:

  • Learn more about the UK Birthing Center, the leading facility in Central Kentucky specializing in high-risk pregnancies and deliveries.
  • The Birthing Center also offers a Childbirth Preparation Program, which will help prepare you for the changes that happen during pregnancy, labor, birth and postpartum. Find out more about our class offerings.
Mom Katie Schaftlein bonds with baby Sadie for the first time.

Quintuplets arrive at UK, granting mom a special birthday wish

The smallest of the quintuplets, Sadie, defied her size with her energy, churning her legs inside and out of the womb. Her sister Scarlett, on the other hand, established herself as the calm and docile member of the bunch. And family members have already pinned Lucas, the sole boy in the group, as the sweetheart perhaps a future golfer, his dad speculated.

“They have the same personalities as they did in my belly,” mom Katie Schaftlein said while getting situated for Kangaroo Care bonding with baby Sadie.

Surrounded by her 6-day-old babies in the Kentucky Children’s Hospital Neonatal Intensive Care Unit (NICU), Katie Schaftlein beheld a lifelong dream fulfilled overnight. She always wanted five children, although her husband Lucas thought they might end up with three or four. The couple’s quintuplets arrived as on Katie’s 26th birthday. She delivered five early but healthy babies Sadie, Sofia, Scarlett, Savannah and Lucas at the UK HealthCare Birthing Center before the stroke of midnight on Friday, Nov. 11.

Preparing for quintuplets

The Lexington couple and UK graduates found out early in Katie’s pregnancy that five babies were on the way. They consulted with high-risk obstetrics specialists at UK HealthCare and neonatologists at Kentucky Children’s Hospital in preparation for delivery, with the goal of sustaining the pregnancy through 28-weeks gestation.

An interdisciplinary team of doctors, nurses and therapists from UK Women’s Health, Obstetrics and Gynecology and Kentucky Children’s Hospital coordinated a integrative care plan for the Schaflein quintuplets, whose expected early arrival would require specialty care in the region’s only Level IV Neonatal Intensive Care Unit.

Quintuplets are extremely rare, with the Centers for Disease Control reporting 47 national cases of quintuplets or higher order multiple births in 2014.

On a Friday morning in September, Lucas boarded a flight for a business trip to Japan. As soon as he landed on the other side of the world, he learned Katie, who was 22-weeks pregnant at the time, was admitted to the hospital while he was in flight. He booked a flight back to the U.S. as soon as possible, flying home a couple days later.

“I left her that day and kissed her goodbye, and three four hours later she was in the hospital,” Lucas said.

Five babies in four minutes

Katie remained in the hospital on bed rest for two months before delivering the babies at 29 weeks and five days gestation. Teams of nurses were assigned to each of the five babies upon arrival, and the medical teams made special accommodations to ensure three additional neonatologists were on-call at all times. Five NICU beds were reserved for the Schaftlein quintuplets.

Neonatologists met with the family during inpatient treatment to assess infant development and predict the status of each baby upon arrival. Katie’s ultrasound a day prior to delivery provided the comprehensive medical team with current information on the development status of each baby.

When Sadie’s water broke at 7:30 p.m. on Nov. 11, Dr. Wendy Hansen’s obstetrics team alerted KCH neonatologists to prepare to receive the babies and took Katie into surgery for an emergency caesarian section. The operation started at 11:30 p.m., but all the babies were delivered in time to share a birthday with their mother.

Hansen, who delivered five babies within four minutes, presented each baby to Lucas and Katie before sending the infants to the NICU for precautionary care and respiratory support. Hansen delivered the last baby at 11:56 p.m., a declaration that sent a cheer through the halls of the UK Birthing Center.

“We were worried because we didn’t want them to have two different birthdays,” Katie said. “Everyone cheered, and at that point I was like, ‘Okay, they are out.’”

It takes a team

Dr. Peter Giannone, the chief of the Department of Neonatology at KCH, credits the dedication of the Schaftlein family, as well as collaborative efforts and streamlined communication among obstetricians, nurses, neonatologists and therapists, for a positive outcome for the quintuplets.

The two departments recently formed the Obstetrics, Maternal-Fetal-Medicine, Neonatology, and Infant (OMNI) follow-up care service line, eliminating communication and collaboration barriers common in academic medical systems by coordinating cross-disciplinary efforts and uniting medical teams to enhance family-centered care.

“My biggest memory is the teamwork that everyone showed to pull this off so seamlessly,” Giannone said.

The Schaftlein quintuplets will remain in the hospital for several weeks before they are ready to go home. In the meantime, UK neonatologists will monitor the respiratory strength and development of the babies. Lucas and Katie Schaftlein, as well as family members in Louisville and Lexington, are visiting and bonding with the babies in the NICU.

The couple said they are grateful for the support, dedication and poise of members of their integrative medical team. Katie was put at ease by the calm demonstrated by Hansen as her water broke and delivery was imminent. Several nurses who assisted the family throughout Katie’s hospitalization were present at the delivery to “catch” (or retrieve) each baby to the NICU.

“It came full circle,” Katie said. “Everyone who helped in the beginning was there for the delivery.”


Next steps:

Media inquiries: Elizabeth Adams, University of Kentucky Public Relations and Marketing, elizabethadams@uky.edu

The Makenna Foundation is partnering with Barnes & Noble in Hamburg for a book fair and drive to benefit KCH's Child Life Program.

Book fair and drive to benefit Kentucky Children’s Hospital

The Makenna Foundation, a non-profit organization that helps support Kentucky Children’s Hospital, is partnering with Barnes & Noble in Hamburg for a book fair and drive to benefit KCH’s Child Life Program.

The KCH Child Life Program is a service that provides patients and families with play opportunities. Through playing, KCH patients are given the opportunity to experience normal childhood growth and to reduce the stress of being in a hospital.

Some activities the Child Life Program offers are:

  • Individualized play in the child’s own room.
  • A large playroom with toys, games and more.
  • Encouraging reading.

The Child Life Program also includes a Multi-Media Room, complete with computers for patients to use.

The book fair will be held Nov. 26 at the Hamburg Barnes & Noble, with all proceeds going to the Makenna Foundation. Customers will have the option of donating 10 to 20 percent of their purchases.

And, from Nov. 1 to Dec. 31, you can also donate books you purchased at the Hamburg Barnes & Noble to KCH as part of the book drive.


Next steps:

Missy Scanlon and her family pose for a photograph.

Neonatal ICU receives generous donation, new name

When the Neonatal Intensive Care Unit (NICU) moves into its revitalized space at the Kentucky Children’s Hospital, it will have a new name to go with the upgraded space and services.

The gift of perserverance

The Betti Ruth Robinson Taylor NICU, set to open in the spring of 2018, honors the $2 million legacy gift from KCH Development Council chair Missy Scanlon. The gift was endowed in memory of Missy’s late mother, Betti Ruth Robinson Taylor, whose determination and perseverance over life’s obstacles mirrored the devotion of the NICU medical staff.

“They serve the families, whether it’s a good outcome or not a good outcome,” Missy said of the NICU staff. “They see the tiniest of babies with these situations and they don’t give up, and that’s how my mom was. She was a good soul, and she tried her best. Whatever you have to do, whatever you have to make happen, you have to keep going until you get it done.”

Missy’s generous gift will equip the NICU staff with the resources and increased capacity they need to care for families as the only Level IV NICU for Central and Eastern Kentucky.

Renovations for patients and workers alike

The expansion includes spacious patient rooms and areas for family consultation and privacy. Designed with a theme representing Kentucky native wildlife and landscapes, these rooms will offer more convenience for long-term patient families through features such as sleeper sofas, wardrobes and kitchen areas. A simulation room for training exercises and “huddle” rooms for staff mentoring and team building are among other advancements.

“KCH is near and dear to my heart; it’s my happy place,” Missy said. “There are so many things that are happening there, and there are so many things that need to happen there.”

Missy’s legacy gift will help make the children’s hospital a happier place for the children and families who depend on it. If you’re interested in donating to KCH, visit www.givetokch.org.


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