Tara took Ryan directly to the family’s pediatrician, where initial testing failed to identify any underlying problems. Ryan was then referred to Children’s Hospital of Pittsburgh of UPMC where gastroenterologists ran a series of tests to determine why the bleeding persisted.

Biopsies of his inflamed colon indicated that Ryan may have Crohn’s disease, a condition that involves chronic inflammation of the digestive tract. Following his diagnosis, Ryan returned to Children’s Hospital almost every month for treatment and care.

In between treatments, Ryan enjoyed spending time in the hospital’s playrooms and taking part in the many activities planned by Children’s Child Life specialists. A sports fanatic, Ryan was thrilled to meet several of his Pittsburgh sports heroes from the Pirates and Steelers.

“After his first three or four visits to Children’s, Ryan didn’t want to leave,” says Tara. “He would tell me that he wanted to get sick again so he could go back to the hospital—that’s how much he loved it!”

To help relieve his symptoms, doctors placed Ryan on various medications. Unfortunately, the medications failed. As part of his ongoing evaluation, doctors repeated the biopsies of his colon to help determine further treatment. From these biopsies, Children’s gastroenterologists determined Ryan had ulcerative colitis and not Crohn’s disease. This finding meant that Ryan would need to endure surgery to remove his damaged colon and cure him of ulcerative colitis.

Over the course of eleven months, Ryan underwent five surgeries. In November 2009, he endured his first surgery in which his colon was removed. Despite feeling a little weak following the procedure, Ryan bounced back very quickly.

In January, Ryan experienced complications. A bowel obstruction brought him to Children’s Intensive Care Unit (ICU), where he endured emergency surgery to relieve the excruciating pain in his lower abdomen. When these complications persisted, specialists determined Ryan would need to undergo surgery, yet again, to clear another obstruction.

Tara attributes the success of these procedures to the expertise of Dr. Cartland Burns, clinical director of Pediatric General and Thoracic Surgery. “Dr. Burns is so experienced. His knowledge and skills put us completely at ease,” says Tara.

In July, Ryan underwent his fourth operation where surgeons created a “j-pouch” or internal reservoir formed of small intestine to assist with digestion in the absence of his colon. Weeks following surgery, x-rays revealed the pouch had healed. On September 23, 2010, Ryan endured his final surgery to reconnect his bowel. In total, Ryan spent more than 100 days at Children’s.

“The nurses really helped guide us through the entire process. When things got tough, they gave us that nudge we needed to continue on,” remembers Tara.

Now 7 years old, Ryan has enjoyed returning to school. After participating in the third annual DVE Rocks for Children’s radiothon held in the hospital’s Eat’n Park atrium, Ryan is quick to tell his first grade class about his on-air appearance. “He likes to think he’s famous,” laughs Tara.

Shannon’s parents, Lisa and Ric Bowser, immediately got in their car and drove to the hospital emergency room in New Castle.

A computed tomography (CT) scan revealed a bright area, indicating a mass of some sort, on the right side of Shannon’s brain. The next step would have been to do a magnetic resonance imaging (MRI) scan to better characterize the mass, but the New Castle hospital didn’t have an MRI machine. So in the early hours of Sunday morning, with her mother beside her, Shannon was transferred by ambulance to Children’s Hospital of Pittsburgh of UPMC, 60 miles away. Shannon’s father, his mind racing, followed the ambulance by car.

“A doctor’s just told you there’s a mass in your daughter’s brain,” says Mr. Bowser, recalling that night. “It’s human nature to think the worst.”

The MRI at Children’s Hospital revealed some bleeding in Shannon’s brain. It showed the mass to be not a brain tumor but a cavernous malformation – a tiny clump of abnormal blood vessels – near the surface of Shannon’s brain.

Although doctors can’t be absolutely sure, it’s possible the malformation had been there since Shannon was born. Some people have such malformations all their lives without any problems, but if one of the tiny blood vessels bursts it can set off a chain of events that results in a seizure.

For the next several months, the antiseizure medication that doctors at Children’s prescribed for Shannon seemed to be working – she had no further seizures. She was doing so well that when the Bowsers proposed taking a five-week driving trip to Alaska in the summer of 2008, Shannon’s doctors had no objection.

The family made it to Alaska without incident, but on the way back Shannon had another seizure. After that, her seizures began to occur more frequently. Some were “kind of a blank look, lasting 30 seconds or less,” said her mother. At other times, Shannon’s whole body would shake for several minutes. These full-body seizures always happened early in the morning when she was lying in bed.

All Shannon remembers of the seizures is getting “a weird feeling” and not being able to speak. “Sometimes I could feel myself shaking,” she says. “Or I could hear my parents talking to me. Afterward I would feel really tired.”

Shannon’s doctors prescribed a second antiseizure medication to keep her seizures under control. It worked. On her 17th birthday in August 2009 – seizure-free for more than six months – Shannon was able to get her learner’s permit and start taking driving lessons.

Surgery Now an Option
But both the doctors and Shannon’s parents were concerned about possible long-term adverse effects from the medications. Side effects may include sleepiness, slowed thinking, and learning problems. The medications can also cause birth defects, which would be a problem if Shannon were to marry and want to start a family in the future.

In December 2009 Shannon was admitted to Children’s to be evaluated for epilepsy surgery. To be a candidate for surgery, explains Deborah Holder, MD, medical director of the Pediatric Epilepsy Surgery Program and director of the Epilepsy Monitoring Unit at Children’s, “you have to have seizures that originate in one area of the brain and it has to be an area that can safely be taken out without leaving any functional deficits.”

After being weaned off her antiseizure medications, Shannon was hooked up to a video monitoring device via electrodes on her scalp to measure electrical activity in her brain. She also had a special type of CT scan that helps to locate the source of seizures by identifying patterns of blood flow in the brain. The results of these tests indicated that Shannon’s seizures did seem to be coming from a focal point on the right side of her brain.

Next came a test to determine where in Shannon’s brain certain speech, memory, and thinking functions resided, to minimize the chance that surgery might affect those functions. In most people, speech is controlled on the brain’s left side. For a small percentage of people, though, speech resides on the brain’s right side. Because Shannon couldn’t speak during her seizures, doctors were concerned she might be one of that small percentage. But the test confirmed that Shannon’s ability to speak was controlled on the left side of her brain and would not be affected by epilepsy surgery on the right side.

The doctors recommended that Shannon undergo a two-part procedure called brain-mapping surgery. In the first part of this procedure, electrodes placed on the surface of the brain generate electrical signals that enable doctors to precisely pinpoint the seizure focal point. In part two, the seizure focal point is cut out of the brain.

Shannon’s surgeries were performed by Children’s pediatric neurosurgeon Mandeep Tamber, MD, PhD. The brain mapping revealed that the focal point of her seizures wasn’t her cavernous malformation but another area of the brain a few centimeters away. So in the second surgery Dr. Tamber removed two pieces of Shannon’s brain – the malformation, just over half an inch (1.5 cm) in diameter, and a second piece, about two inches (5 cm) in diameter, next to the malformation, which the brain-mapping procedure showed was the area of brain generating her seizures.

“Nine times out of ten, taking out the malformation and a small rim of tissue around it would stop the patient’s seizures,” says Dr. Tamber. “But in Shannon’s case, if we had just done that, we would have missed the seizure focus. The brain-mapping procedure showed us we needed to perform a more extensive resection.”

Now, Seizure-Free
Shannon has been seizure free since the surgery in February. Her blonde hair has grown back to cover the incision on the right side of her scalp. Her postoperative MRI showed that the abnormal areas of her brain had been completely removed. A follow-up EEG in August revealed entirely normal electrical activity in her brain.

If Shannon continues to progress well, by next March she should be able to discontinue the medication.

“We usually keep patients on medication for a year to give the brain a chance to completely heal,” says Dr. Holder.

“Shannon has done fantastically well,” says Dr. Tamber.

Shannon’s mother agrees. “It’s amazing how quickly she’s bounced back,” she says.

For her part, Shannon, who turned 18 in August, says she feels great and doesn’t feel the surgery has affected her ability to function in any way.

That’s because “in epilepsy surgery we only take out brain that’s functioning abnormally,” says Dr. Holder. “Doing the brain mapping enables us to take out the part that’s causing seizures and leave the normal, functional brain in place.”

Just a few days after her 18th birthday, Shannon started in a nursing program at Butler Community College. She says her experiences as a patient convinced her nursing would be a rewarding career. “One day I’d like to work at Children’s Hospital,” she says.

To read more, please visit Promises.

When his symptoms worsened, Nick went to his family pediatrician where he was tested for strep throat and mononucleosis. Although the results came back negative, Nick’s parents Nancy and Richard were certain there was a problem.

After additional testing, Nick’s pediatrician called Nancy at work and explained they had found a malignancy.

“When the pediatrician told me to sit down, I immediately knew there was something seriously wrong,” said Nancy.

Nancy rushed Nick to Children’s Hospital of Pittsburgh of UPMC where physicians diagnosed him with acute myeloid leukemia (AML).

“I was in shock,” remembers Nancy. “Dr. Ritchey really took his time explaining things. He was so patient and compassionate.”

On February 1, 2010, Nick began chemotherapy treatment. For the next six months, he spent a month living at Children’s Hospital, returning home approximately every two weeks following treatment.

Unable to leave his room due to the risk of acquiring an infection, Nick passed the time by playing Xbox, using the hospital’s laptops, and spending time with friends who came to visit.

“Nick handled everything with incredible strength and so much dignity,” said Nancy. “He never said ‘why me’ or complained once throughout his treatment.”

In June, Nick acquired an infection so severe that it sent his body into septic shock. As he was wheeled into Children’s Intensive Care Unit (ICU), doctors asked him how he was doing. Nick’s response was “super-duper”.

Despite his struggles, Nick always kept his sense of humor. He was able to battle the infection and his organs remained undamaged.

Nick has completed treatment and returns to Children’s once a month for follow-up care. After recently celebrating his sixteenth birthday, Nick is eager to hit the road with his driver’s permit. He is also back to skateboarding and playing hockey with his friends.

“One day your life completely changes and you are at the complete and utter mercy of the doctors and nurses. You never want to have to go to Children’s, but I don’t think [Nick’s experience] could have been any better than it was,” says Nancy.

Nick (center) and his family pose with Sean McDowell during the DVE Rocks Children's Radiothon

Josh returned home after a short hospital stay, but his life is no longer the same. He has headaches, dizziness, stiffness, and difficulty sleeping. Comprehension and concentration also are challenging, and Josh is currently home-schooled. “At first, he tried going to school for a half-day, but the lights and noise were too much for him to handle,” says Josh’s mom, Gwenn.

Josh is expected to recover, but now, the time he spends reading, watching TV, and playing video games is limited. Prior to his crash, Josh played football and baseball. He doesn’t any more, due to the risk of suffering a second concussion.

“Our lives have pretty much changed,” says Ken, his father. “We all have gained a new outlook on life. Considering how bad it could have been, Josh was lucky.” When asked what he’d like to say about his experience, Josh simply said, “I should have worn a helmet.”

“Developmentally, Ethan was on schedule,” said his mother, Cindy. “He was very active and always running around. We never would have known there was a problem if it wasn’t for his pediatrician.”

During a routine check-up, Ethan’s pediatrician detected a heart murmur. Cardiologists at Children’s Hospital of Pittsburgh of UPMC then diagnosed him with an atrial septal defect (ASD), which is a hole between the two top chambers of the heart.

After a successful and routine surgery to repair the hole, Ethan had two unexplained cardiac arrests. A subsequent emergency cardiac catheterization revealed that Ethan’s coronary arteries were extremely narrow and unable to sustain his heart.

“The doctors told us that our two-year-old had the coronary arties of a 95-year-old man, and they didn’t know why,” Cindy remembers. “The only hope for him would be a heart transplant.”

Ethan was then placed on ECMO (extracorporeal membrane oxygenation), a machine that did the work for his heart and lungs. Because ECMO is considered to be only a temporary measure, his doctors, led by cardiac surgeon Peter Wearden, MD, PhD, requested and received approval from the Food and Drug Administration (FDA) to place Ethan on the Berlin Heart.

The Berlin Heart is a pediatric heart assist device that has been used with success in Europe but is still considered experimental in the United States. Dr. Wearden and his team at Children’s are among a handful of physicians in the country who have undergone special training to implant the device in children as young as Ethan and must get FDA approval for each procedure.

“Ethan had two strokes which doctors feared would leave him blind and with other neurologic deficits,” his mom said. “He was on the Berlin Heart over a period of six weeks, and we never gave up hope.”

The hope was well-placed. Ethan started showing signs of improvement and Dr. Wearden ordered another cardiac catheterization.

“Following the catheterization, the doctors came out of the room and they were in tears.” Cindy said. “Ethan’s coronary arteries appeared to be completely normal and clear. He was weaned off the Berlin Heart the next day and was removed from the transplant list a few weeks later.”

Ethan developed compartment syndrome of his right leg, and required a few more surgeries to repair the leg before he returned home.

Today, Ethan is back to being a healthy and active toddler, and will soon start his second year of pre-school. He still returns regularly to Children’s Hospital for check ups, and just as doctors do not understand why his heart initially failed, they don’t understand why it completely healed itself.

But his mom knows. He is a true medical miracle.

Oliver, who is back to being a rambunctious, fun-loving boy, had plenty to say and plenty of hugs to go around.

It was October 2009, and inflammation continued to ravage Julie Stierer’s colon. Medications prescribed to control it had stopped working months earlier, turning the cheerful life of a 9-year-old into one of frequent diarrhea, fatigue, anemia, and dehydration. More and more mornings came when she’d be too sick to go to school. Dance and other activities she once enjoyed were out of the question.

“Everything stopped,” says her mother, Kari Stierer. “She was lucky to get through the day.”

Although medications had failed, a surgical option to relieve Julie’s condition remained. Children’s Hospital of Pittsburgh of UPMC surgeon R. Cartland Burns, MD, explained to the family that in a series of operations he could remove Julie’s chronically inflamed colon and reconstruct her small intestine so she would feel better and have normal bowel function.

As difficult as it was to accept the idea that Julie needed major surgery, her parents found some comfort in the fact the operations would be performed as minimally invasive procedures, rather than conventional open surgeries. That meant much smaller incisions — the longest being less than two inches long — and an easier, much quicker recovery.

A few days after her colon was removed, Julie was back home. “She felt better instantly,” says her mother. One week later, Julie was back in school telling her teacher and classmates all about her operation.

A Better Way of Doing Surgery
Children’s Hospital is a national leader in minimally invasive procedures. Nearly half the hospital’s 13 surgical suites are equipped with state-of-the-art minimally invasive technologies. Children’s Hospital surgeons are also among the nation’s most experienced in minimally invasive surgery. Today, they are performing an increasing number of these procedures, which range from more common operations such as appendectomies to complex neonatal, abdominal, and chest surgeries.

The term “minimally invasive” describes the key reason patients like Julie benefit from this type of surgery. In conventional, “open” surgery, surgeons usually make a large incision to create an opening big enough to see what they are doing and to perform the operation with conventional surgical tools.

But minimally invasive surgery requires much smaller incisions. That’s because surgeons perform the operation using tiny surgical instruments that can be threaded through very small openings. Surgeons also insert a small tube-like telescope — either a laparoscope or a thoracoscope — and a camera through the same small incisions. These imaging technologies allow them to see inside the patient’s body and send highly detailed images to a series of movable television screens in the operating suite.

For surgeons, using a laparoscope has certain advantages over conventional open surgery. “There are certain parts of the body that are hard to reach because they are under the ribs or way toward the back of the body or down near in the pelvis where you can’t see easily,” says Dr. Burns, associate professor of surgery at the University of Pittsburgh School of Medicine and co-director of the Intestinal Care and Rehabilitation Center at Children’s. “With the laparoscope, you have the ability to drive up into those areas and look around. In some of these operations, you see so much more than you ever saw before. a lot of the things we used to do by feel, we now do by seeing.”

For patients, the much smaller incisions used in minimally invasive surgery usually means less time spent under anesthesia, less pain, less time on narcotics to control pain, much less scar tissue, shorter, easier recovery, and a much shorter time between their operation and when they can return to full activity, including sports.

“Minimally invasive surgery isn’t a deviation from the gold standard,” says Dr. Burns. “It’s an improvement above it for those reasons.”

Tiny Instruments, Big Benefits
Symptoms of the disease that required Julie Stierer to have minimally invasive surgery surfaced in late 2008, when she and her parents began to notice blood in her stool. At first, it was believed she had Crohn’s disease, an inflammatory bowel disease without a known cure that causes inflammation of the lining of the digestive track and leads to abdominal pain, severe diarrhea, and other problems.

Medications prescribed to keep it under control worked at first. But by May of last year, her symptoms had returned, including the discomfort, blood in her stool, frequent diarrhea that kept her up most of the night, anemia from blood loss, and the constant risk of dehydration.

Out of options, her parents agreed to a series of three minimally invasive operations to be performed by Dr. Burns at Children’s Hospital. During the first, which was done in October, Julie’s inflamed colon was removed and her small intestine attached to the wall of her abdomen, in a procedure called an ileostomy. The ileostomy allows digestive waste to exit the body through a small hole in the abdomen called a stoma and into a bag that can be emptied. In Julie’s case, this was done as a temporary solution.

After the tissue of Julie’s colon was examined, it was determined that she had ulcerative colitis, another kind of inflammatory bowel disease. Unlike Crohn’s disease, ulcerative colitis usually attacks only the colon. That meant that once Julie’s inflamed colon was removed, she was unlikely to ever again experience the symptoms of the disease.

As part of the process, Children’s staff made sure Julie and her parents were educated about her condition, how her body has changed, and the care she needed. This included teaching them how to live with and care for her ileostomy during the few months she needed to use the external bag. In fact, she was given a special doll that helped explain it.

Had Julie had conventional surgery to remove her colon, she probably wouldn’t have been able to return to full activity for six weeks and would likely have needed narcotics to manage pain for up to a week after returning home.

But after her minimally invasive operation, Julie experienced minimal pain and only needed one or two doses of pain medicine, her parents say. She had the operation on a Wednesday and was home on Saturday. “She was back in school a week later with her ileostomy doll, explaining everything to her class,” says her father, Ray Stierer. “That shows you how quickly she was feeling better and that she was at peace with everything.”

A second minimally invasive operation was performed in December so that Julie wouldn’t have to live with the ileostomy bag for much longer. Using the same tiny instruments that required only small incisions, Dr. Burns created a pouch in part of her small intestine and attached it to the cuff of the rectum during a two-hour operation called an ileoanal anastomosis, or ileoanal pull-through. The pouch acts as a reservoir that allows a patient to pass waste normally and not wear an ileostomy bag.

Patients such as Julie receive long-term observation at Children’s Hospital. Three months after her final surgery, Dr. Burns described her prognosis for living life free of the symptoms of her disease as excellent. “Now she’s back to being a kid,” says her mother. “She’s playing softball for the first time, she goes to school, she rides her bike — everything.”

Read more in Promises.

Julie Stierer (left) and her friend, Bella Janowiak

R. Cartland Burns, MD, Clinical Director, Division of Pediatric General and Thoracic Surgery

Zachary Weight, Age 16

In September 2009, Zachary Weight was riding his dirt bike at his home in Belle Vernon, Pa., when the family’s dog ran out in front of him. To avoid a collision, Zach slammed on the brakes, falling directly onto the handlebars as he was thrown from the vehicle.

Having witnessed the crash, Zach’s father, Dan, rushed to his side. Moments later his mother, Christy, called for an ambulance. Zach was taken directly to the Pediatric Trauma Center at Children’s Hospital of Pittsburgh of UPMC, where pediatric radiologists determined he severely lacerated his liver, fractured a rib, and lacerated his spleen.

Due to the severity of his injuries and his strained breathing, doctors feared Zach’s body would be unable to handle major surgery. He was sent instead to the Pediatric Intensive Care Unit for recovery, where he endured abdominal drains to remove the large amount of fluids overwhelming his body. “From the trauma team to the housekeeping staff, everyone was so kind, they truly cared,” says Christy.

For 45 days, Zach underwent continuous testing and treatment including physical and respiratory therapy before he was sent home after a full recovery. Zach has since returned to playing soccer, football, and wrestling for his high school teams.

Zach with his dog Taz

Twenty-five dollars later, he and systems analyst Fred Roberts had a prototype. Now they have a patent application, and a safer pharmacy.

Assisting patients throughout this adventure are four distinctive characters: Haley the Hippo, Tillie the Tiger, Marcellus the Monkey, and Tara the Toucan. Patients and families embark on a safari adventure for Nuclear Medicine, relax at “Cozy Camp” for PET scans, take a trip to outer space for MRI scans, explore the ocean for CT scans, and discover the beach for Radiation Oncology.

Distraction Therapy
The focus of the Adventure Series is to provide successful distraction therapy that will appeal to all five senses. Three-dimensional decorative elements were created for an enhanced viewing effect, and lights, sounds, and aromatherapy were added to create a one-of-a kind experience for each and every patient.

Themed educational coloring books for each modality are under way to better prepare children for their procedure in an entertaining way. A relaxation CD for “Cozy Camp” is in the beginning stages of production from Children’s own Music Therapy Department. “Cozy Camp” postcards, signed by the radiology staff, are given to patients after their PET scans to tie in their themed adventure.

The Department of Pediatric Radiology at Children’s Hospital is a leader in transforming the pediatric imaging experience by engaging children and their families in this interactive, unique adventure.