In 2004, Kristina and Ron Turnis, from Dubuque, Iowa, were expecting their third child. Thirty weeks into a very normal pregnancy, Kristina had a routine ultrasound that revealed some very serious problems with the baby. She was immediately sent to University of Iowa Stead Family Children’s Hospital where the baby was diagnosed in uteri with a non-hereditary birth defect called Posterior Urethral Valves (PUV), a condition that causes chronic kidney disease. The baby’s urethra was completely blocked, which prevented proper elimination, which caused severe damage to lungs, kidneys, bladder and ureters. The doctors advised Kristina and Ron that their baby had a very slim chance to survive, and they should prepare for the worst and pray for the best- which they did.
Christopher was born 6 weeks early, on September 30, 2004. Due to PUV, he was very sick when he was born. He spent his first six weeks in the Neonatal Intensive Care Unit (NICU) of University of Iowa Stead Family Children’s Hospital. At 2 weeks old, he had surgery to repair his urethral valves. At that time, the doctors predicted he would also need a kidney transplant at age 2. Fortunately, he loved to eat as a baby and gained weight well, which was a critical factor in his health and healing. His kidney function improved slowly, and the doctors were “guardedly optimistic.”
At 6 months old, Christopher began severe vomiting and diarrhea. Combined with chronic kidney disease, this caused frequent dehydration issues that resulted in many more stays at University of Iowa Stead Family Children’s Hospital. His symptoms worsened over time, and at 3 years old, Christopher was diagnosed with Eosinophilic Esophagitis (EE), a rare inflammatory disease of the esophagus that causes vomiting and extreme discomfort. Today, he receives most of his primary nutrition and calories from two surgically placed feeding tubes: a g-tube that goes directly into his stomach, and an f-tube, that bypasses his stomach and goes directly into his small intestine. There are times he cannot tolerate any kind of nutrition through his digestive system at all, and relies on Central Venous Nutrition. The only safe foods he can eat are rice, potatoes, eggs and strawberries.
Christopher received a kidney transplant just after his sixth birthday. There have been complications associated with the transplant, but things are stable for now. Because of his young age, and the fact that transplanted kidneys function for 10- 12 years, doctors know Christopher will need future transplants. Matches will be difficult, so long-term dialysis may be necessary.
Both PUV and EE are chronic, life-long diseases, with no cure. At this point in time, Christopher takes 15 pills a day, and receives the majority of his calories from formula, administered directly into his stomach through a j-tube. As Christopher grows, he will require advanced specialty care and changing treatments to keep up with his changing body. His future is unpredictable, but hopeful.
After 40 surgeries, more than 100 hospital admissions equaling 1000 nights in UICH, and a strict diet, Christopher is an energetic 9 year old who slows down only to play video games with his 16-year old sister Kara, and his 14-year old brother Nicholas. He considers everyone a friend and is honest to a fault, the result of growing up in a hospital.
This Hawkeye fan is always there with a smile and a joke, and continues to inspire everyone who meets him.
Christopher recently kicked off a University of Iowa Stead Family Children’s Hospital event with a question for Coach Ferentz: “Hey Coach, what did the coach say to the vending machine?? — I want my quarter back!”
In addition to being 2016 Honorary Captain of our Ladies’ Football Academy, Christopher is also the 2016 Iowa Ambassador for “Champions Across America,” a national advocacy program of Children’s Miracle Network. Through this program, he will represent the 10 million kids treated at Children’s Miracle Network Hospitals every year. He will share his story, and what the lifesaving care he receives at University of Iowa Stead Family Children’s Hospital means to him and his family, with media, lawmakers, and people all over the nation, to raise awareness and support, not just for University of Iowa Stead Family Children’s Hospital, but CMN hospitals nationwide.
Make a donation to the University of Iowa Stead Family Children’s Hospital on behalf of Christopher.
“When we were expecting our second baby, we had no reason to believe that things would be different than they were with our first son, Jake, who was born after an uneventful nine-month pregnancy,” says Katie Baustian.
Katie’s water broke at 22 weeks gestation, and everything changed. It was too early and the pregnancy was not considered viable. While there wasn’t anything the doctors could do for Katie or the baby then, they advised Katie and husband Ryan to go to University of Iowa Stead Family Children’s Hospital; baby’s best chance at survival was to be born there.
“With that in mind, my husband Ryan and I drove to Iowa City and checked in to a hotel near the Children’s Hospital. Luke was born six days later, a day shy of 23 weeks gestation.”
Luke weighed just 1 pound, 5 ounces. His head was roughly the size on an egg, and his feet were about an inch long. He was alive, but breathing with the help of a special ventilator, designed to minimize damage to tiny preemie lungs.
Luke had a 40% chance of survival. If he did live, there was a 20% chance that he’d have a permanent disability. The statistics were frightening, but the doctors reminded them that they were just statistics; that Luke was unique, and might not to fall into any of these categories.
Early in the morning, after Luke’s first night in the NICU, Katie called to check on him. “I can still remember – word for word – the nurse’s description of his night, ‘his left lung collapsed a little, but we gave him some surfactant.’ To me a collapsed lung sounds pretty serious – certainly enough to scare a new mom – but the nurse was so calm. This set the tone for his hospital stay. Things happened that sounded terrifying – some of them really were pretty bad – but the doctors and the nurses knew how to handle everything. We soon realized what amazing people were caring for Luke and what a remarkable place he was in.”
Luke continued to make progress. One of his doctors told them that her plan for Luke was for him to start kindergarten on time and no one would even know he was a preemie. As confident as the doctor was, Katie and Ryan admit there were times it was hard to imagine that happening.
There were ups and downs, but overall things went well. Luke’s organs kept functioning, all of his neurological tests came back fine and eventually it was determined that he just needed time to grow. With help from the Neonatal Intensive Care Unit team, he got that time to grow. At 5 months old, he was ready to go home.
Since then, there have been countless doctors’ appointments, and a few hospital stays. Luke was on oxygen around the clock for about 4 years. He always had a 50-foot tube trailing behind him, but that didn’t slow him down. Now, he only uses oxygen at night. Luke’s enjoying his freedom, and on course for a healthy and happy childhood.
True to the doctor’s plan, Luke will start kindergarten in two years, on track with his classmates. Luke is truly a miracle. The entire family will be forever grateful to the highly skilled and specialized care he received at University of Iowa Stead Family Children’s Hospital.
Swarming Kinnick Field with the Iowa Football players will be a dream come true for many participating in this year’s Ladies’ Football Academy. For parents Toby and Jim Riddle, from Des Moines, Iowa, whose two daughters, Megan and Natalie, will be leading the swarm, it represents so much more. Both daughters suffer from Juvenile Arthritis, a disease that afflicts an estimated 300,000 children in the United States. Fortunately, with an early diagnosis, and the aggressive, state-of-the-art treatment received at University of Iowa Stead Family Children’s Hospital, Megan and Natalie demonstrate that children no longer have to be side-lined by this disabling disease.
Arthritis is commonly thought of as a disease of “old” people, and its development associated with a past injury. Rather, Juvenile Arthritis, a condition in which the immune system attacks the joints, has no known exact cause and no known cure. It can be difficult to diagnose because when a child limps or complains of pain in a limb, virtually no one thinks about arthritis as a potential cause. Megan and Natalie’s mom Toby describes the diagnosing of Juvenile Arthritis like this: “When you hear hoofbeats, you don’t think of zebras.”
Today, however, the Riddle family knows all too well that even the very youngest children get arthritis.
Their oldest daughter, Megan, now 13, developed a limp and the inability to extend her knee when she was just 13 months old. These symptoms regressed with minimal therapy, but recurred at 4 years of age. Toby recalls, “There was a major worsening at 6. We noticed that not only was her knee swollen, but now it was both knees, both ankles, one of her wrists and her jaw that were affected. Treatment with non-steroidal anti-inflammatory medications, like ibuprofen, helped some when it was just one knee, but no longer helped. Megan was in pain each day. She couldn’t participate in sports and couldn’t keep up with her friends during regular childhood play; she couldn’t run. She was seen by a local pediatric rheumatologist but wasn’t getting better. Her jaw wouldn’t open all the way, she had lost muscle mass in her right leg and had growth abnormalities in her knee.”
Toby and Jim sought a second opinion at the University of Iowa Stead Family Children’s Hospital. Pediatric rheumatologist, Dr. Polly Ferguson confirmed Megan’s diagnosis of Juvenile Arthritis and she instituted a more aggressive treatment plan. Megan improved and was once again able to keep up with her peers.
“I remember the tears I shed the first time I saw Megan run!” says Toby. “We were so grateful and thankful to have access to the care Megan needed. Dr. Ferguson, was and continues to be full of compassion and understanding of not only Megan’s physical needs, but also the arthritis related emotional needs of our family as well.”
However, the Riddle family was taken by complete surprise when one year later, Megan’s younger sister Natalie, who was 3 at the time and is now 9, started limping shortly after recovering from a gastrointestinal illness. Toby and Jim struggled to believe that Natalie too, could have juvenile arthritis, but the morning stiffness and swelling of the knee prompted them to bring her to Iowa City to see Dr. Ferguson. Toby says, “The news was devastating; not only one, but both of our daughters had Juvenile Arthritis.”
Juvenile Arthritis use to be one of the most common disabler of children, but according to Dr. Ferguson, treatment options have improved greatly and virtually no child ends up in a wheelchair any more. Still, the disease can be difficult on the child and family. Treatment includes multiple pills,weekly shots and frequent blood draws. It is fortunate to have this high level of pediatric specialty care available here in Iowa.
“Our family is truly grateful for Dr. Ferguson and the Pediatric Rheumatology Department at University of Iowa Stead Family Children’s Hospital. In 2009, our family attended the National Juvenile Arthritis Conference in Houston, TX. We were astonished to meet other kids and families who have no pediatric rheumatologists in their state and therefore are not treated, or are under-treated by adult rheumatologists who are less aggressive with medication therapy. It brings me to tears as I think about all that University of Iowa Stead Family Children’s Hospital has done for our girls and our family, thank you!!!” says Toby.
At the 2013 Iowa Ladies’ Football Academy, honorary captains Bridget, Caroline and Jamie Schmid can stand tall among the towering Iowa Hawkeye football players. Born nine years ago, they weighed barely two pounds and struggled to breathe through underdeveloped lungs. Today they can out-sprint the ladies and prove that champions come in all sizes.
In 2004 the Schmid triplets from Dubuque were born at University of Iowa Stead Family Children’s Hospital at 27 weeks gestation, or nearly three months before a normal newborn’s due date. Preterm labor was likely caused by a serious condition during pregnancy known as twin-to-twin transfusion syndrome, which can hinder a baby’s growth and development.
The Schmids knew that multiples often arrive early but hoped to carry the pregnancy ideally to 34 weeks. This was not to be the case. Parents Mike and Liz remember a crowded room of doctors, nurses and specialists on hand for the delivery, all working in tandem with neonatology experts assigned to each child.
“It was an unbelievably stressful time,” says Liz. “We were thrilled to become first-time parents but worried constantly about the long-term risks affecting infants this size and age.”
The Schmids joined the other critically ill babies in the Neonatal Intensive Care Unit with similar lifelines—breathing and feeding tubes, cardio-respiratory lines, and catheters all supplying their little bodies with nourishment and medicine. The medical team worked quickly and efficiently to stabilize the three Schmids and replace the support normally provided during pregnancy. The first weeks were the toughest, acknowledges Liz. Preemies this fragile can sometimes encounter scary complications such as infection, respiratory distress, and intraventricular hemorrhage or bleeding in the brain, which can cause long-term developmental problems in serious cases.
“We experienced a rollercoaster of emotions,” says Liz. “With three babies it seemed like we were dealing with all of the big problems in one child or another. The NICU became our home away from home, as we watched the monitors, fretted about test results and marveled at these beautiful tiny babies.”
As soon as it was physically possible and safe, the Schmids were able to bond more closely with their babies, something most parents take for granted. “It took a while, but I was finally able to hold one of the girls after three or four weeks, and the nurses showed us how to care for all three. It meant so much.”
The Schmid family stayed at Children’s Hospital for ten weeks. During this time, Liz says she came to count on the personal, straight-forward information she received from the medical staff, as well as the caring support during the toughest days.
“It’s hard to believe how far our daughters have come since then,” says Mike. “Critically ill preemies like ours can sometimes face long-term developmental challenges. Thankfully, we were spared that. Instead, Bridget, Carrie and Jamie are happy, healthy and active little girls, all working beyond grade level at school and loving every minute of it. We couldn’t be more blessed.”
Liz agrees. “We owe it all Children’s Hospital. We have fine medical centers in our hometown, but they can’t duplicate the levels of skill, experience and service available in Iowa City.” She adds, “We’re more than cheerleaders for Children’s Hospital, we’re proof of the NICU’s exceptional outcomes.”
Korrie continues to do wonderful with Uncle Mitch’s kidney! She is now in college and engaged to be married.
Korri Hoeger of Earlville, Iowa, wasn’t feeling well over the 2009 Labor Day weekend, so her mom, Mitzi, took Korri to see their family doctor in Manchester. What began as a routine visit, however, quickly turned serious. Korri was immediately transported by ambulance to UI Children’s Hospital.
After several tests, including xrays, blood work, an ECKO, CT scan, and a kidney biopsy, a team of specialists diagnosed Korri with Wegener’s Disease. Wegener’s Disease is an autoimmune disorder that causes inflammation of the blood vessels and organs. Korri was hemorrhaging in her lungs, and her kidneys were not functioning properly. It was more than serious; it was life threatening.
“We were scared to death,” says her mother, “but we also knew that Korri was getting the best care anywhere.”
Korri received immunosuppressive medications to treat her disease. After three weeks in the hospital, Korri was able to go home. She would need to return to UI Children’s Hospital three times every week for dialysis.
After a few weeks at home, however, Korri was once again not feeling well. “We called the doctors at Children’s Hospital,” recalls her mom. “We couldn’t explain what the problem was; Korri said she ‘just didn’t feel right.’ The doctors trusted her instincts and urged us to bring Korri back to Iowa City so they could check her out. We’re really glad we did.”
Due to her weakened immune system, Korri had developed a serious fungal infection. Korri spent 38 more days in the hospital. She went home the day before Thanksgiving—a great moment for the Hoeger family! Mitzi praises the UI Children’s Hospital team with identifying and treating Korri’s infection, and credits them with the wonderful outcome.
Through it all, Korri remained positive. When asked what she told herself during her hospitalization, Korri doesn’t hesitate, “I knew I was going to make it through and everything was going to be OK. I just wanted to be home by Christmas, and I got home by Thanksgiving, so that was exciting.”
It was predicted that by the time Korri was a high school senior and fully recovered from her infection, she would be an eligible candidate for a kidney transplant. That was two years ago. Since then, she and her parents made the 160 mile round trip from Earlville to Iowa City, three days every single week, for dialysis.
That was up until November 2011! In 11th grade at Maquoketa Valley High School, Korri became the first UI Children’s Hospital patient to receive home hemodialysis. Korri’s nephrologists suggested the home hemodialysis as an alternative to the drive to Iowa City 3 times a week for dialysis. This was an option Korri and her family were grateful to choose. Not only did this made things easier for Korri and her family, it allowed all of them to return to a more “normal” schedule. Korri then became able to attend school everyday and found time again to hang out with friends!
As her mom says, “She’s a strong kid.” Both Mitzi and dad Russ stress that words cannot express the appreciation they feel toward the doctors, nurses and staff members at the University of Iowa Stead Family Children’s Hospital. “I like to use the word ‘amazing,’” Mitzi says. “They will do anything to help you, and all they want is to get kids well and back to normal… that’s their goal, and they do a wonderful job.”
On January 12, 2012 Korri received a kidney transplant. Her Uncle Mitch was her donor. The initial plan was to wait until Korri was a senior in high school but the doctors began evaluating Korri early and determined she was eligible for transplant.
Since her accident, Alivea has had multiple steriod injections and several scar revision surgeries to remove the larger scar bands from the grafted tissue on her torso. These surgeries are necessary because the scarring restricts her movement and effects the way she grows. They are performed by a plastic surgeon and take four hours. Barring complications, they can be done as an outpatient. Recovery is painful and requires a week of bedrest and inactivity. How many more surgeries will be needed depends on how much Alivea continues to grow.
Currently, Alivea is now a junior in highschool, involved in many things. Because of her accident and experience with University of Iowa Stead Family Children’s Hospital, she serves on the Youth Advisory Council for University of Iowa Stead Family Children’s Hospital, which provides important input and feedback on issues of patient care, as experienced through the eyes of a child.
“She has continued to build on the confidence she gained being the Honorary Captain of the 2011 Ladies’ Football Academy, and is becoming a beautiful young woman,” her mom Lynnette is happy to report!
Alivea is also involved with Miracle Burn Camp at Camp Foster at Lake Okoboji, Iowa. Camp is for children ages 8-18 who have experienced a burn injury or other traumatic injury or wound requiring skin grafting.
Miracle Burn Camp is conducted by a staff of professional firefighters, burn survivors, burn care professionals, and YMCA camp experts. These volunteers serve as camp counselors and activity leaders.
Summer camp is a special experience for children. It is an opportunity to become independent from their parents, make new friends, explore different experiences, and enjoy the great outdoors.
Children who attend Miracle Burn Camp at Camp Foster experience the fun of camp and have the opportunity to be themselves in a non-threatening environment. They meet others who have experienced similar feelings, fears, and concerns.
Every year, Alivea and her mom, Lynnette, team up with the Iowa Ladies’ Football Academy to raise money for the University of Iowa Stead Family Children’s Hospital. “This opportunity allows us to give back to all those who gave so much to us during our time of need. University of Iowa Stead Family Children’s Hospital will always hold a very special place in our hearts.”
Alivea Carnahan’s life changed on August 10, 2009. She was lighting a fire to make s’mores at her home out in the country when her shirt caught on fire. While she had learned to “stop, drop and roll,” her first instinct was to panic. She was rushed to a local hospital,but due to the severity of her injuries, she was transferred to University of Iowa Stead Family Children’s Hospital. She suffered burns on 19% of her body, mostly her stomach, chest and arms.
She was put in isolation and had to be fed through tubes while receiving hydrotherapy to remove all the burned skin. She required 5 hours of surgery to graft skin from her legs to her stomach, chest and arms. She was released from the hospital after 11 days, and after a few weeks she was able to return to school full time.
One and a half years later, she is still undergoing painful physical therapy and plastic surgery, but she has pretty much returned to a normal life with her family.
“I owe the University of Iowa Stead Family Children’s Hospital a BIG thank you for helping me and my family thru this journey. The nurses, doctors, child life therapists and social workers are great! They are supportive, caring, honest and tough. It is thanks to them that I was able to overcome this accident and return to a normal life. They spend everyday helping kids like me.”
“Your support is important. I challenge you to sign up and BEAT the $500 goal!”
“Good Luck & Go Hawks!”