“I love you, Daddy”: The moment three years ago today that I’ll never forget.

Three years ago today, my youngest son, Eli, spoke to me. He was 7 years old and he had not spoken for exactly four months. The words were hard to understand and they came slowly, with painstaking effort. But he spoke. “I love you, Daddy.” Pretty sweet, huh?

But I am starting in the middle of the story. Here’s the rest:

On November 12, 2010, Eli had just run his third 5k race. For the second time, he finished in less than 30 minutes. He hadn’t been feeling well for a few weeks, but he ran really well that morning.

Eli running a 5k race, four days before his brain tumor diagnosis

Four days later, a CT scan revealed a 3.5 centimeter mass in the posterior of his brain. On November 17, Riley Hospital neurosurgeon Dr. Joel Boaz removed the tumor. Eli sustained a complication from the procedure called Posterior Fossa Syndrome, and he was unable to swallow, speak, or control most of his body while his brain started the process of rewiring itself. A shunt was placed in his head to assist the drainage of fluid from his brain.

In the meantime, an MRI revealed that the cancer had metastasized to his spinal cord and to other portions of his brain. Riley oncologist Dr. Melissa Markel led his cancer care, and along with Dr. Boaz, remains one of our favorite people. Dr. Jeffrey Buchsbaum, a radiation oncologist at the IU Proton Therapy Center in Bloomington, drove through an ice storm the day before Thanksgiving to discuss the benefits of proton radiation therapy, as opposed to standard photon radiation. He was adamant that proton therapy could benefit Eli, and with fewer side effects (like secondary cancers) than standard radiation. He was very persuasive.

After 30 treatments in Bloomington (riding in an ambulance each way from Riley), Eli was cleared for chemotherapy. The remaining portion of the primary tumor was reduced in size by over 50 percent during radiation. We could smell victory.

Eli had a complicated course, with shunt infection and removal, multiple gastric surgeries to try and address nutrition, and the blood count issues that are common with chemotherapy. We spent nearly 10 months at Riley, with only a few times when he could come home.

Eli resting at home in the sun during a rare break from the hospital during his cancer battle

Eli at a rock festival

We worked in shifts: Eli’s mom, Angela, stayed at Riley through the week while I stayed with Eli’s older brother and sister. On the weekends, the roles reversed. Spending that amount of time at Riley, we developed a strong bond with the staff and health care professionals. The nurses in particular became like members of our extended family.

Eli’s primary nurse, Debbie Andersen, was absolutely vital to our ability to care for Eli and still maintain our sanity. Often, Debbie (among many others) would sit with Eli to allow us to go for a sanity-preserving run.

Eli slowly improved.  After four months, he could speak. After eight months, he could eat. After a year, he could walk with a walker. Now, he can sometimes walk short distances without a walker. Last summer, he went to a multiple-band rock festival. He is back in school and, until a recent fundraiser for the St. Baldrick’s Foundation, he even had some hair to brush.

Eli is still slowly improving. He has goals. He wants to walk again. He wants to run again. He works diligently to achieve those goals. The physicians, nursing staff, and therapists at Riley and at IU Proton Therapy Center have all done their part; without them, Eli would not be here.

We are profoundly grateful for their hard work, their dedication, and their personal investment in Eli and in our family.

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“They Were Like Superheroes”: Sullivan’s Riley story

Any time Casey Spay is out working in the yard or shoveling snow at his Noblesville home, you can bet Sullivan, along with his trusty stuffed owl, will be right there by his dad’s side. The curly-haired 3-year-old has curious eyes that are full of wonder and exploration. Life wasn’t always this carefree. On the day he was born, Sullivan was thrust into a battle for survival.

Sullivan "Sully" Spay (right) from Noblesville with his brother, Leo

A Shocking Discovery

Stephanie Spay had a normal pregnancy, and on July 11th, 2010, a natural birth. But moments after their seemingly perfect 9 lb., 5 oz. baby boy entered this world, the Spays learned this would be nothing like the smooth ride they had with their firstborn. “Our doctor told us Sully had a heart defect and would need surgery immediately to survive,” said Stephanie. “Nothing can prepare you for a devastating moment like that.”

Sullivan was born with a heart condition called transposition of the great vessels. The two main arteries that carry blood and oxygen to the heart and out to the body were switched, preventing his body from receiving ample oxygen.

Within the hour, a team from Riley Hospital for Children at IU Health arrived at the north-side Indianapolis hospital where Sullivan was born and airlifted him to Riley. “They were like superheroes,” said Casey. “They came in and took over, and I knew he would be okay.”

Fighting for Life
The next day the family received more bad news. Sullivan had developed pulmonary hypertension. That meant surgery had to be pushed back, and Stephanie and Casey couldn’t touch their day-old son. “I cannot describe the anguish of seeing your newborn child fight for his life and not being able to even hold him,” Stephanie said. “If it were not for the amazing, caring doctors and nurses at Riley, I don’t think we could have made it through those first dark days.”

Sullivan was placed on ECMO, an infant lung and heart bypass machine that kept him alive while he awaited surgery. Seeing Sullivan hooked up to life support was, at times, overwhelming for his parents. “I just thank the Lord for the men and women in the NICU,” Casey said. “That has to be the hardest job in the world, and they stayed calm and kept us calm in a horrible situation.”

Road to Recovery

After many sleepless nights for the family, Sullivan rallied, and Riley heart surgeon Mark Turrentine, M.D., performed a successful open heart surgery. “Two things kept me going,” recalled Stephanie. “One, we are truly fortunate to live 30 minutes from one of the very best children’s hospitals in the country. Also, the fact that Dr. Turrentine eats, sleeps and breathes his job brought immeasurable comfort.” Sullivan continued to make steady strides, and went home 44 days after he was born.

Normal Life, Joyful Hearts

Today, other than a yearly visit to his cardiologist, Sullivan is a happy, healthy, 3-year-old who adores his big brother Leo. “Now Sully has a chance to be a normal kid,” says Stephanie.

Stephanie, Sully, Leo and Casey Spay, Noblesville

“He can enjoy sunny days and trips to the park thanks to the unmatched care and ability of the Riley staff. They saw him as a very sick little guy, but I wish they could see him now—how he runs and plays with joy in his amazing little heart.”

Sharing your family’s Riley story is a powerful way to give back and inspire others. Click here to submit your Riley story so we can consider sharing it in one of our Riley Children’s Foundation publications.

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A Dog, a Surprise Delivery and a Tattoo: One Unforgettable Riley Story

This is Lolita Guerrero.

She and her fiancé, Willie, are from Coram, New York.

This is Rocky.

Lolita and Willie were on their way to Northern Indiana last November to pick up their new dog Rocky, but during their trip, they also got a surprise.

This is Ariel.

Lolita went into preterm labor and gave birth to Ariel in South Bend. She was born at 26 weeks’ gestation (14 weeks premature).

This is how tiny Ariel was when she was born.

She weighed a little more than 2 pounds.

This is Ariel a few months later in her room in the NICU at Riley Hospital for Children in Indianapolis.

She was transferred to Riley by ambulance during a December snowstorm because she needed intestinal surgery.

This is Carrie Gorski-Murphy, RN, one of Ariel’s many friends in the NICU.

Carrie is one of countless Riley nurses, doctors, Child Life staff members and social workers who teamed up to take care of the whole family during their unexpected four-month stay. After Willie had to return to work at home in New York, Riley social workers even provided a flight voucher (courtesy of Southwest Airlines) so he could return to Riley to visit his daughter.

These are footprints and handprints from Ariel and Lolita, transformed into mermaids and sea creatures.

This artwork will soon be on display for Riley families to enjoy in the new outpatient surgery family waiting lounge.

And this is how much Ariel’s father appreciates the hospital that saved his daughter’s life.

Willie wears a new Riley wagon tattoo on his arm.

As the family prepares to bring Ariel home, this is Lolita’s message of gratitude for Riley Hospital’s staff:

“I’m so blessed. They are the best here at Riley. I am very thankful to them for saving my baby. She is a miracle. She is a fighter.”

Riley Children’s Foundation is grateful to the thousands of generous donors who help make stories like this possible. Thank you for supporting Riley Hospital.

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Skylar’s Riley Story: “They make you feel almost like it’s their baby too.”

Surprising Start

Skylar Miller, Elkhart, with her mother, Danae Miller

Like most mothers of newborns, Danae Miller of Elkhart spent the first several months changing diapers, giving baths, feeding, rocking, and playing with her baby. Unlike most mothers, her daily routine took place 150 miles south of her hometown, in a private room inside Riley Hospital’s new Simon Family Tower NICU.

Skylar during her early days in the Riley NICU

Her daughter, Skylar, has been full of surprises since her first day of life. She was born seven weeks prematurely, weighing 4 pounds, 6 ounces. Danae and her husband Erik quickly discovered Skylar had a bigger complication than prematurity: her heart had a hole called a ventricular septal defect (VSD) that would need to be repaired, and an arch that wasn’t attached as it should be.

Lifeline

Skylar was airlifted to Riley Hospital for surgery to correct the arch. It was a terrifying time for the new parents, but Danae says she and Erik were comforted by the compassion and expertise of their medical team. “The doctors explained everything to us,” she recalls. “They made us feel like they had all the time in the world to talk to us about it. They drew us pictures. It’s just amazing.”

Riley heart surgeon, Dr. John Brown operated immediately on Skylar’s tiny heart to connect her arch. She needed more surgery soon afterwards because the blood flow still wasn’t strong enough to supply her abdominal organs. Pediatric surgeon, Dr. Alan Ladd performed emergency abdominal surgery to remove some damaged sections of intestine. Then, pediatric cardiologist, Dr. Mark Hoyer placed a stent in the arch of Skylar’s heart to improve blood flow. Just before Christmas 2013, when Skylar was strong enough for her final open heart procedure, Dr. Brown closed the hole in her heart.

Another Twist

Doctors at Riley also discovered Skylar had a small cleft in her palate. Genetic testing revealed that her medical issues were part of a condition called DiGeorge Syndrome.  Along every twist and turn of their Riley journey, Danae says she has been comforted by the dedication of their care team. “They make you feel almost like it’s their baby too. It puts me at ease because I know they are watching out for her.”

The Miller’s Message for You

All that TLC paid off. Take a look at Skylar today.

Skylar Miller today

Her parents are amazed by how far she has come. She weighs nearly 12 pounds and is “growing like a weed.”

Skylar is scheduled for surgery to repair her palate next July. “Other than that, we are enjoying a normal life with our baby finally with us at home,” says Danae.

This grateful Riley family has a message for everyone who supports Riley Hospital through fundraising and donations: “I didn’t fully understand what a great place Riley was until we were there. It’s important for people to know how much of a difference they’re making by donating to Riley—not just for these little kids, but for their families.”

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Story Power: Our doctor’s surprising advice

I expected to hear a lot of advice and information from the doctors and nurses at Riley Hospital for Children when my son was diagnosed with leukemia, but I wasn’t expecting this one.

“Start a blog,” the doctor told me. “Put all the information about your son’s treatment in one place on an online journal so that you don’t have to repeatedly tell your friends and family all of the details along the way. And later, it will serve as a great journal for you.”

Karson shared the scrapbook of his leukemia journey with his classmates

That conversation occurred seven years ago when I first became a “cancer mom.” Seven years in the world of technology is like a century. At that point I didn’t know many people who had blogs. My grandma didn’t even have the word “blog” in her vocabulary. It seemed like strange advice coming from a doctor, but it turned out to be some of the best advice I was ever given.

The blog allowed friends and family to keep up with Karson’s progress during the long three-plus years of chemotherapy. But even now, seven years later, with Karson healthy and in remission, I’m still reaping the benefits of having such a detailed record of our journey.

Karson was only 2 years old when he was diagnosed. He was 5-and-a-half when he finished treatment. He remembers some things, but now he wants to know about the parts that he has forgotten. We tell him what we remember. There are some moments that I remember with such clarity that bringing them to mind elicits a physical response of weak knees and teary eyes. But other moments are blur. How did we get through three years of chemo? Which medicines did we hate the most? How did we feel during the first month of our son’s treatment?

But we have that blog, and it has been printed and transferred into scrapbooks over the last several years. It is priceless. Our whole story is there. The thousands of words and hundreds of updates that our fingers typed are a window into how we felt during those years traveling down a long, hard road.

Just last week, Karson had the opportunity to take his book to school and share his story with his 3rd grade classmates. His class has been studying various types of illness and cancer, and Karson decided that he wanted to share about his cancer with his friends. When I asked him why, he said, “Not many kids get cancer, and I want my friends to know that I’m a survivor.”

Sharing the story meant so much to Karson, and the scrapbooks made it so much more real to his classmates. It was a joy to sit with my son as he told his classmates about his cancer and showed them pictures of his ever-changing looks during those years of hair loss and weight gain.

I’m so thankful that Karson is a survivor who is able to share his story and inspire others.

I’m so thankful for the doctor who gave me such wonderful advice to record his story in written words.

And I’m so thankful to be a contributor to this Riley blog, which is giving more Riley families, supporters and staff members a chance to raise awareness about Riley through the power of their stories.

Would you like to share your Riley story? If you are a Riley Hospital patient, family member, employee or supporter, we invite you to click here submit your Riley Story through our main website, RileyKids.org, so we can learn about you and consider sharing your story in a Riley Children’s Foundation print or online publication.

 

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Q & A with Dr. Marshalleck

Riley Pediatric Interventional Radiologist Francis Marshalleck, M.D.

When Riley Champion Sneha Dave is asked about her “dream job,” she has a clear vision: she wants to follow in the footsteps of Dr. Francis Marshalleck at Riley Hospital and become a pediatric interventional radiologist.

Born and raised in Belize, Dr. Marshalleck  attended medical school at the University of the West Indies, then returned to Belize for two years to work as an emergency room physician.

He  completed a transitional year in pediatrics at University of Miami’s Jackson Memorial Hospital, and subsequently a residency in Diagnostic Radiology at the University of Texas, Houston. Dr. Marshalleck then completed an adult interventional radiology fellowship at Indiana University and an additional fellowship in pediatric IR in Toronto, Canada. Two years ago, he attained U.S. citizenship.

Today, we introduce you Dr. Marshalleck – one of the many health care professionals making a difference for kids at Riley.

Q: Can you describe what your daily work as a pediatric interventional radiologist entails?

A: We do a lot of venous access, percutaneous biopsies and drain insertions. Unique to pediatrics is the management of congenital vascular malformations which we treat with sclerotherapy and embolization. This aspect of the work has grown tremendously, and currently we are a part of a multidisciplinary clinic dedicated to the treatment of vascular malformations. It is the only clinic of its kind in the state of Indiana.

Q: What do you find most rewarding about your work at Riley?

A: Working with children is a blessing. Parents and referring physicians are very appreciative of what we do. I always enjoy the cards of thanks I get from families, some of whom keep in touch even long after their procedure. Having three children of my own ages 8-15, I apply what I learn at home to my job. That helps me tremendously in dealing with children of all ages.

Q: Riley’s Child Life program is made possible largely because of donors’ gifts through Riley Children’s Foundation. How do Child Life Specialists make a difference for the children you work with?

A: We depend on Child Life Specialists to help us, especially with patients who are not being sedated for a procedure. They are a vital component to our team to ensure that the patients are comfortable and appropriately distracted during the procedure. The Child Life Specialists at Riley Hospital do an amazing job keeping the children at ease and allowing us to be efficient in our jobs. iPads rock!

Q: What do you want the public to know about Riley Hospital?

A: That Riley Hospital fulfills the needs of not only the children but also the family as a whole. Riley continues to be the main institution in the state of Indiana dedicated to the care of children. Throughout the 11 years that I have been here, I continue to be amazed at the dedication of the staff towards continued improvement of care. Interventional radiology has blossomed over the years, providing state-of-the-art therapy. Riley is the only institution in the state with dedicated pediatric interventional services.

It is my pleasure to be a part of the Riley team.

Read more about Dr. Marshalleck here in a faculty profile article from the IU School of Medicine.

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Surprises and Smiles: Why this inspiring Riley kid got a standing ovation from his entire school

Champion Surprises

Owen George, Newburgh

Over the past few months, my family has been honored to help Riley Hospital through a unique opportunity. My son Owen was selected to serve as one of the seven 2014 Riley Champions presented by Kroger.

We accepted the honor in order to give back to an organization that we have benefited from over the past 14 years. (Owen was born with spina bifida, and our family deeply appreciates the care he receives not only at Riley Hospital in Indianapolis, but also at Riley’s regional clinic at Deaconess Gateway Hospital in Newburgh, Ind.)

But when Owen was selected as a Riley Champion, we had no idea what that would mean and the friendships that would form.

The 2014 Riley Champions presented by Kroger at the Riley Annual Luncheon: Paige Rawl, Diana Overman, J.T. Wood, Carter Swathwood, Dylan Shumaker, Owen George and Sneha Dave

We encountered another surprise soon after Owen was named a Riley Champion: we learned he would have to have three surgeries in a matter of weeks, including two different hospitalizations over Thanksgiving and Christmas amounting to four weeks in the hospital.

In between these surgeries was the Riley Annual Luncheon, where the Riley Champions made their public debut. Of course, in typical Owen spirit, he attended the luncheon with all smiles, showing he was more than happy to be a representative of Riley.

Inspiring Determination

From myself, my husband and daughter, to Owen’s aunts, uncles, cousins and grandparents, Owen’s determination has taught our family so much.

There are days where I think, “Can I do this?” Then I think of how hard Owen and the other Riley Champions work to overcome obstacles. That is all I need.

Classmates’ Ovation
Owen was formally recognized as a Riley Champion during a pep assembly at his school – Castle South Middle School. (Little did we know that Owen’s shunt was starting to malfunction at this time, but of course he still did a wonderful job.) School leaders, classmates and the Riley Children’s Foundation joined forces to celebrate Owen and make him feel like a champion. But this was the moment I’ll never forget:

Owen’s classmates at Castle South Middle School in Newburgh, Ind., gave him a standing ovation during his Riley Champion recognition event in December 2013 – See more at: http://blog.rileykids.org/?p=3505&preview=true#sthash.mY8rGbjg.dpuf

Owen's classmates at Castle South Middle School rise to their feet to congratulate him

Watching the student body give my son a standing ovation was probably one of the most heartfelt things I have witnessed.

Thank You

Owen and Mindy George

As a parent of a Riley Champion, I would like to thank all of the nurses and doctors at Riley Hospital who are involved in the day to day care of the children. There were several nurses on the units where Owen stayed who were excellent and went above and beyond for the kids.

I also love the fact that several Riley doctors regularly visit clinics in different parts of the state to provide care – this is much appreciated by the parents.

Also, thank you to everyone who supports Riley Hospital.

Your generosity makes Riley a place where kids and parents can receive the care they deserve.

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My Dance Marathon Story: “It is truly one of the best feelings in the world.”

Happiness, excitement and pride don’t even begin to touch upon all of my emotions as I attended Ball State University Dance Marathon (BSUDM) this past weekend. The marathon was especially personal to me because I am an alumna of the organization and now working for Riley Children’s Foundation.

Colorful Riley Magic

It’s hard to describe the magic that is Dance Marathon. The combination of brightly colored outfits, peppy committee members, crazy dance moves and games make the events fun, but at the end of the day the most important and emotional part is hearing from the Riley families.

How Do They Do It?

Prior to the marathon, a friend asked me how dance marathons raise the amount of money they do and how they continue to grow year after year. Although I’m not sure there’s a precise answer to that question, there is one thing I know for sure: as the dollar amount grows from year to year, so does the passion of the students participating in the event. I think the trick is getting students to the marathon, because once they’re there and realize the impact they’re having on Riley families, it’s easy to get hooked.

Riley Champions Unite

BSUDM reunited me with the 2014 Riley Champions presented by Kroger: (Back row) Sneha Dave; J.T. Wood; and Dylan Shumaker. (Front row) Diana Overman; Paige Rawl; and Carter Swathwood. (Owen George, not pictured, also attended.)

This year, I was lucky enough to introduce all seven of the 2014 Riley Champions Presented by Kroger to BSUDM, including Ball State student Paige Rawl. For some of them, it was not only their first BSUDM experience, but also their first university Riley Dance Marathon experience. It was a fun opportunity to show all of their families the marathon that led me to become involved with Riley.

By the Numbers

This year’s BSUDM racked up some impressive numbers! A few of the highlights:

-More than 30 Riley families attended the marathon.
-More than 1,300 dancers participated at the marathon.
-More than 300 committee members and 21 executive board members worked throughout the year on BSUDM.
-$42,000 was raised at the marathon itself
, and more than $700 was raised by four courageous women who shaved their heads.
-And of course, an amazing grand total of $344,801.21 was raised FOR THE KIDS!

Pride and Gratitude

It truly is one of the best feelings in the world to watch an organization you were a part of flourish and thrive after you are gone. It gives you hope that you have planted some seeds to help encourage the organization’s future success.

I could not be more proud to say I am an alumna of BSUDM, and I know I would not be working at Riley Children’s Foundation today if I had not gotten involved.

Thank you to all past, present and future executive board members, committee members, dancers and sponsors—your dedication and passion are such an inspiration.

You have helped change the lives of kids and families at Riley Hospital for Children!

To learn more about the Riley Dance Marathon program, which includes collegiate and high school events, click here.

 

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Dance Party Prayers: A Caleb Update

Caleb and I at our "other home."

I know it might sound weird, but I love going to Riley. It’s like going to my other home, with friends I miss and love to catch up with. It’s the place where my son got better—where we got another chance for a life together as a family.

It was our home for a year, and that doesn’t go away quickly.

Or maybe ever.

Caleb went in recently for his third biopsy since his heart transplant, so we spent the day at Riley. They used a catheter to go in through his neck to take samples of tissue from his heart. I went back with him to the cath lab and stayed with him until he was all the way asleep under anesthesia.

He never once cried.

Caleb held my hand, laid himself down on that table, let them put the mask on him, and breathed into it steadily until he was asleep. As unsettling as it is to see your child go under anesthesia, my discomfort was outweighed by my pride. Caleb is so strong, and I could not be more proud of him.

Riley offers lots of happy distractions, including bubbles, for kids like Caleb who are preparing for procedures.

While at Riley, we visited with lots of nurses and even some of our friends who are still inpatient after months in the hospital. It made my heart ache to spend time with them, since I so desperately want them to have what we have: a new heart for their child so they can go home.

The next morning we were all exhausted after spending the day in the hospital and getting home and to bed late, but Caleb still did great at his physical therapy session. On our way home, we got a call from our transplant coordinator: The results from Caleb’s biopsy were great, and the team is thrilled with how Caleb is doing.

We celebrated by getting McDonald’s for lunch (not my choice) and having a dance party in our kitchen. We cranked up the music and Jonah attempted to break dance while Caleb tried to copy. My husband Daniel’s moves were probably my favorite of all. We finally had to stop because my poor children were desperate for a nap. Caleb slept for four hours—I think he’d earned it. A full day at the hospital including a heart cath, and he gets up in the morning and rocks it at physical therapy? That kid could have probably asked me for anything and I would have said yes. (Good thing all he wanted was a McDonald’s cheeseburger!)

Caleb was amazing at his physical therapy session (with Brett Fischer) one day after his biopsy

I know we won’t always be the ones getting good news, so I cherish these days. I remember, all too well, that not long ago we were the ones sitting in a hospital, waiting and watching our child get sicker. Tonight I am going to pray for those friends who are still waiting for their good news.

I’m praying they get their turn to have a dance party, and for God to sustain them while they wait, just as He did us.

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Good Nights: A Riley sleep expert shares wisdom about kids and sleep

Nearly every parent has battled the exhaustion and frustration that can result when a child has trouble sleeping.

But sometimes, a child’s sleep problems are serious enough to require medical attention. The Riley Hospital for Children Sleep Disorders Center is Indiana’s only pediatric sleep clinic, staffed with caring experts trained to help children sleep more safely and soundly.

Deborah Givan, M.D., is the director of the Children's Apnea and Sleep Disorders Program at Riley Hospital for Children

Today,  Dr. Deborah Givan, the director of the Children’s Apnea and Sleep Disorders Program at Riley Hospital for Children at IU Health, shares some of the insights she has learned during her career in pediatric sleep medicine.

Q: Tell us about your background and how you joined the sleep lab team at Riley Hospital.

A: I grew up in a very small town in Southern Indiana (Milan, which is located near Cincinnati) and went to college at Hanover. While in college, I became interested in science and then medicine. I attended medical school at IU and did pediatrics at Methodist but took several rotations at Riley. Even then,  I appreciated the cooperation between the specialty services that I felt led to giving patients good care. I did a year of pulmonary fellowship at Riley, where one of my duties was to push around  a recording unit to do physiologic studies on children.

My husband took a neurology residency in Texas and I spent time there in a pulmonary fellowship at Texas Children’s Hospital. I met Carol Rosen, who was performing sleep studies in infants with equipment she had to put together. I then spent two years in Philadelphia and worked with the neurologists to do rudimentary sleep studies there.

When I returned to Indiana, they were doing sleep studies in the Riley emergency room and preparing to set up a real sleep lab. With the help of my colleagues, we started with one bed and now have eight beds at the Riley Sleep Lab. There are also eight beds at our IU Health North location in Carmel. We have performed over 50,000 studies during the 29 years I have been here.

Q: What kinds of conditions are addressed at the Riley Sleep Lab?

A: We now have a full-fledged sleep program and take care of children with every kind of sleep disorder. The most common one is sleep apnea. This one requires a sleep study to diagnose. Other sleep disorders evaluated in clinic (and sometimes with a sleep study) include narcolepsy, parasomnias (sleep walking, confusional arousals, and sleep terrors), periodic limb movements of sleep, behavioral and circadian rhythm disorders. We now have three (soon four) boarded sleep disorders specialists and an accredited sleep disorders lab.

Q: So many children have issues with sleep. How can a parent know when to seek a doctor’s help with their child’s sleep problems?

A: A parent should consult their pediatrician if they are concerned about the child’s sleeping. I would like to stress that snoring is never normal in a child. It is not always pathologic, but could be, especially if the child is very restless, sweats during the night, and has daytime behavior problems. Children between the ages of 4 and 11 years are rarely sleepy since they tend to protect their sleep. If they are chronically sleepy, something is wrong.

On the other hand, teenagers are chronically sleep deprived, usually from social obligations and the perception that they don’t need sleep. Most teenagers need nine hours of sleep a night and few are able to obtain that. Habits that promote staying up later and sleeping in on weekends tend to create circadian sleep disorders making it difficult for the teenager to fall asleep early, even when they want to. Sleep deprivation increases risky behaviors, depression, and auto accidents.

I find that educating families about sleep really helps improve most sleep disorders. I would like to have sleep education as part of the health curriculum in middle and high school.

Q: What is the most rewarding part of your work?

A: Working with families to solve issues surrounding sleep is very satisfying. In the case of severe sleep apnea, treatment with tonsillectomy and adenoidectomy can cure the sleeplessness and behavior problems and sometimes save a life. However, just explaining the mechanism of sleep to parents can allow them to make simple changes that really impact quality of life and school issues.

Q: Is there an example that stands out in your memory of a patient who you were able to help?

A: I once took care of a 5-year-old boy who was having behavior problems that were directly related to not sleeping. I recommended  some behavioral therapy including removing the TV from his bedroom and sleeping in his own bed. He wanted no part of that and became very agitated. You could see him becoming angry and ready to spurt something out. He looked at me and my raspberry colored jacket and yelled “You pinkie!” (His mother later confided that she didn’t know what he was going to say). At the next visit, he was doing very well with no more tantrums, sleeping well, and feeling much better. He brought me a pink carnation.

Q: What would you like people to know about Riley Hospital?

A: I would like the community to know how much the people at Riley care about what they do. Everyone goes the extra mile and works harder to make sure that the children get the best care possible.

Most children’s hospitals are very special places. It is hard to describe what is unique about Riley, but I think that it starts at the top. Dr. Richard Schreiner (the former Physician-in-Chief at Riley) once told me that he wanted physicians at Riley who were good physicians and good teachers, but more importantly good people; people who, through their actions and words, serve as examples to those who come after them.

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