Honorary Captain
Jackie Montour
In 2009, 14-year-old Jackie Montour from Carlisle Iowa, was a healthy, active young teen. She had played basketball and volleyball and became a cheerleader (Flyer) for Carlisle High School.
Jackie’s heart problems began unexpectedly. She was hanging out at home, looking forward to a visit from her boyfriend. By the time he arrived, Jackie wasn’t feeling very well, and he noticed she wasn’t acting right; she seemed confused to see him and wasn’t walking straight. Not sure how to help, he called some of her good friends. When they arrived, they found Jackie in the bathroom; they noticed her face and skin were a grey, ashen color, and she was stumbling. They alerted Jackie’s father, and insisted they take her to the hospital. Next thing Jackie knew, she was being assisted into her family’s van and being told by one of her best friends that they were taking her to the hospital.
By getting Jackie to the hospital when they did, they saved her life.
At first, mom LeaAnne and dad Grant, thought it could be a migraine. Test results indicated something much more serious. Her troponin levels were very high (Troponin measures heart muscle damage; in older people, this is the indicator of a heart attack).
They admitted Jackie. When the heart doctor arrived, he asked, “Has anyone in your family just suddenly dropped dead” and “Are there any heart issues in the family”? At this point, it became clear something very serious was happening. The answer to both questions were yes. A paternal uncle passed away suddenly in his 60’s, and there were other heart issues on that side of the family. Jackie’s cousin, who was the same age as her mother, had undergone many open-heart surgeries beginning in her 20’s.
After monitoring Jackie, the episode was diagnosed as myocarditis, an inflammation of the heart muscle, usually caused by an infection. It would be several years before they found out it was caused by something much more serious. *
Jackie felt like someone was sitting on her chest. The damage to her heart was causing life threatening arrhythmias. Her heart also wasn’t pumping properly from the damage. Heart Echo EF was functioning at 30; it should be 50 or better. She received an internal defibrillator and pacemaker. She was placed on heart medications, instructed no physical activity, including gym class and cheerleading indefinitely, and would need continued monitoring of her heart.
This was devastating to an active teen. At this same time, Jackie’s maternal grandma, Judy Good, was admitted at another hospital with pneumonia, and ended up passing. Jackie did not get to say goodbye to her grandma.
After 3 years of no physical activity and the pacemaker not firing for arrhythmias, Jackie asked if she could do some lite cheerleading her senior year because she loved the sport. The doctor agreed, reluctantly, to give a trial for cheering only, NO flying acrobatics or strenuous activity, just basic yelling cheers, stomping and arm movement. Jackie was doing ok, until…
After cheering on her Carlisle Wildcats Wrestling team at Wells Fargo Arena, when she was climbing the stairs to leave, her defibrillator kicked in. She was shocked, literally and figuratively. She went immediately home, called her UI team, who ordered her to Iowa City the next day.
After that, the doctors would monitor and adjust the pacemaker as needed. Jackie was seeing a Pediatric Cardiologist is Des Moines, and a Pediatric Cardiac Electrophysiologist specialist from UI Stead Family Children’s Hospital. Even with best efforts and care, Jackie began to feel more fatigued.
At one point, she was life flighted to UI Stead Family Children’s Hospital, with her dad by her side, due to the erratic arrhythmia activity. She spent her senior homecoming dance in the hospital. Grant and LeaAnne recall, “We brought her dress, the hospital salon did her hair, and we had a mini homecoming dance. Her friends surprised her, driving to Iowa City, all dressed up in their formal wear to celebrate with her. There was a red carpet walk in the PICU for her and another little girl parading in a red tutu. We appreciated it so much.”
The Pediatric Cardiac Electrophysiologist did an ablation, a procedure to try to stop /reduce some of the arrhythmias from occurring. Jackie was released and being monitored.
Still, her heart continued to fail.
Jackie started to have pain in the middle and right side of her rib cage. She mentioned this during a follow-up appointment with the Pediatric Cardiac Electrophysiologist. He decided to do a heart echo after a physical assessment revealed an enlarged liver. The Echo indicated her EF dropped to 20, from 30, which meant her heart was declining/ failing. He gave them the news, a heart transplant would likely be needed, and referred her to the Pediatric Heart Transplant Team at UISFCH.
They would be taking over her heart care at this point. They were very upfront; based on the decline of Jackie’s heart, it would be surprising if she would make it another two years. They wanted to place her on the Organ Donor Registry before the age of 18 because pediatrics, at that time, received any donor hearts first. Then, if a pediatric patient is not a match, the adult with the highest need is next. Adults typically have a longer wait time. Because she was under 18 when she started care, she would be able to stay on the pediatric registry until after college.
Jackie was placed on the Organ Donor Registry in 2012, at age 17, midway through her Senior year of high school.
She continued to become more fatigued. As a short-term treatment, she was put on a milrinone infusion pump and given all kinds of medications. In some instances, milrinone can actually heal the heart muscle. This didn’t happen in Jackie’s case. By going on milrinone, it bumped her up on the organ donor list as a priority.
She was able to have the IV in her arm and carry the milrinone pack in a small backpack around school. The only freedom she received from the pack, was when she changed it out in the evening; she would do a “freedom dance” around the house for a few minutes.
Jackie continued her senior year. She could only go half days to her high school classes and had to stop attending her extra classes at the local community college altogether. She still graduated, and with honor roll status. “I walked proudly across that stage with my infusion bag in my dress pocket,” Jackie says.
Shortly after graduation and celebrating her 18th birthday, it was becoming harder to breath, and Jackie was feeling even more fatigued. She started to get shocked by the pacemaker more often. At one point she was so scared, she came in to sleep next to mom.
We reached out to the doctor and explained that she was extremely fearful and not acting her usual self. She was admitted to UI Stead Family Children’s Hospital for a few days of monitoring. Her main doctor and nurse were out of town at a conference. The doctors that saw her during that time determined that she did not have any significant issues on the heart monitoring so her pacemaker was adjusted so she would not get shocked until her heart rate got to a higher rate. She was sent home. Jackie was scared and did not feel comfortable going back home. Her parents asked her Paternal grandma, Janet Montour, a retired ICU nurse, to stay with them until the transplant.
Back home, Jackie told mom she just did not think she could go up the stairs to her room. They set up a pull-out couch bed for her and her grandma to use.
A few days later, Jackie went into cardiac arrest.
She was napping with her grandma. She decided to go up the stairs and take a shower. Her brother’s room was upstairs as well. He heard a struggle and a growling noise. Grandma then heard a big thud and ran up the stairs to find her brother begging for her to stop playing around with him (they had watched a horror movie the night before) He was scared and didn’t know if she was fooling around or if she was really in trouble. Grandma went to open the door and it was locked. Her brother used a hanger to get it open and pulled her out of the bathroom for grandma. While Grandma started CPR, brother called 911. **
Police and rescuers arrived. Jackie was unconscious and not breathing. She was immediately life-flighted to Mercy to stabilize her. The doctors at Mercy were in contact with UISFCH. With her mother at her side, Jackie was iced down to lower her temperature to conserve her brain. Her arms were moving in a way that indicated potential brain damage. They were all praying. She and mom were life flighted to UISFCH. She was shocked many times (at least 9) and had to be placed on life support as a bridge to transplant, to let her body recover. She was in a medically induced coma and could only move her tongue and finger. They had to take her off the transplant list until she was strong enough to handle heart transplant surgery. A tracheotomy was placed to help her breathe. She received an LVAD, a surgically implanted mechanical device to help the heart pump. She also had dialysis as her kidneys took a hit. (They recovered)
After 2 months of work and dedication from the Children’s Hospital staff, Jackie had regained enough strength to be placed back on the Organ Donor Registry. She was #4 on the nationwide waiting list, and #1 in Iowa. “They didn’t let me give up no matter how many times I wanted to,” says Jackie. Jackie had to learn to sit up, sit, hold up her head and stand again.
She was just beginning to be able to stand for one minute by herself. It was October 3, 2013, when she received the call. Jackie would be getting a new heart! She called all her friends to tell them the good news; it didn’t matter that it was 2 a.m.!
She was prepped and taken into surgery on October 4th, 2012, and due to complications, didn’t come out until October 5th.
In the middle of surgery, she had to be taken back to her room with her chest still open because they couldn’t stop the bleeding. Her family and hospital team were by her side, waiting for a miracle. They sang to her and talked to her until suddenly the bleeding was controlled. They used 62+ units of blood. They took her back to the OR and finished what amounted to a 24-hour surgery.
Because she was still learning how to stand and walk all over again from the cardiac arrests months earlier, and further weakened from the extensive transplant surgery and bleeding, Jackie had a tough road ahead.
Her kidneys took another hit and she began dialysis again.
Jackie could not hold food down.
Her adrenal glands took a hit and were no longer making hydrocortisone, so Jackie needed additional help of a Pediatric Endocrinologist. (Adrenals regulates the hormone for Flight or Fight)
Because the dialysis bags contain sugar, she became diabetic and needed insulin shots.
When the heart stops working, so do a lot of other things. As the doctors got everything under control, Jackie began to feel better and was able to eat again.
3 months after her transplant, in January 2014, Jackie was transferred to a rehab facility close to home. Once released, the first thing she wanted to do on her way home was to stop at the gym to see the cheerleading coach and the girls- to show them she made it!
With a walker and a wheelchair, and still regaining her strength, Jackie returned home for the first time in 7 months. She attended physical therapy for a year and occupational therapy to relearn how to walk and eat. After 6 months, her kidneys made a complete recovery and dialysis was no longer needed and the diabetes went away. Shots no longer needed to this day!
“Through all of the trauma, I was able to survive because I had such a great team of nurses, doctors, family and friends who refused to give up on me,” Jackie says.
One year after her surgery and still recovering, Jackie attended Iowa State University. She graduated in May 2018, with a degree in Interior Design.
She is committed to raising organ donor awareness and supports various heart health causes.
Something else Jackie holds dear is the memory of her heart donor. “I can’t imagine not keeping in touch with my heart donor’s family,” Jackie says. Something his family tells me he always wanted to do was fly a plane.” So, this year in his memory, Jackie plans to do just that!
*After the transplant, Jackie’s old heart was sent to a lab for study, testing and dissection, among other things. It was discovered she had a congenital heart defect that caused all the trouble- a “new” type of congenital defect- not yet on the books.
** Jackie’s family was told later that CPR has to be administered just right to get someone out of cardiac arrest. Less than 5% survive a cardiac arrest.
Caroline Naeve
When Caroline was delivered in a Bettendorf, Iowa, hospital after a fairly uneventful pregnancy, her skin tone was a concerning bluish purple. The nurses performed pulse oximeter testing and initially thought the machine was malfunctioning when it registered her oxygen level at 60 percent. Thanks to the quick thinking of the OB/GYN staff there, an echocardiogram was performed and revealed Caroline had an undiagnosed congenital heart defect, dextro-Transposition of the Great Arteries or d-TGA, where the two main arteries that carry blood to the heart are reversed. Babies diagnosed with this defect require surgery soon after birth to restore adequate blood flow to the rest of the body.
Caroline was immediately life-flighted from Bettendorf to UI Stead Family Children’s Hospital and received a Rashkind procedure where a catheter with a balloon is threaded up through a vein to create a hole between the walls of the heart so that oxygenated blood can reach the entire body. Two days after her birth, she underwent a lifesaving open-heart surgery, called an arterial switch, where the arteries are switched to their correct positions. The coronary arteries (small arteries that provide blood to the heart muscle) also must be moved and reattached. Caroline spent 19 days in UI Stead Family Children’s Hospital after her surgery. Out of all congenital heart defects, d-TGA is one of the few that requires immediate action after discovery but has a low prevalence of future surgical interventions. Caroline will continue to be monitored to assure the affected arteries grow with her and her heart valves continue to function properly.
As Caroline’s mother, I know her excellent prognosis is directly related to the exceptional care she received when diagnosed and the continued care she receives through UI Stead Family Children’s Hospital. From the amazing cardiology and Pediatric Intensive Care Unit staff to the physicians, nurses, aids, and support staff that cared for her, our family felt, and continues to feel, well taken care of. I remember how motivated the staff was to get me pumping so that Caroline would have breast milk when she was allowed to eat. Members of Caroline’s team came in on their breaks to give me tips and tricks that they used with their children. During one of Caroline’s examinations, she was in a need of a diaper change—which was quite the feat with all the wires and tubes—and the physicians stopped what they were doing to carefully change her diaper. There was no hesitation or calling someone else to complete the task—they never missed a beat. These experiences are just a few that exhibit why UI Stead Family Children’s Hospital is such a special place. The people there truly care about making a difference in our children’s lives.
Caroline’s recent diagnosis of juvenile idiopathic arthritis (JIA), an autoimmune inflammatory joint disease, has sent us to a new department in the UI Stead Family Children’s Hospital for treatment. About a week after Caroline had what we would call a normal childhood fall, her knee swelled up and she was limping. Her knee worsened to the point where she could not get out of bed and was not her normal energetic self. We worked with local specialists who referred us to the UI Stead Family Children’s Hospital when Caroline’s symptoms did not improve. A simple blood test indicated Caroline’s body was having an autoimmune response—in essence, her body was attacking and damaging healthy tissue. We were able to get into rheumatology quickly, which resulted in an early diagnosis of JIA and minimal damage to Caroline’s joints. Caroline will receive care for this diagnosis for the foreseeable future. It is not thought that Caroline’s heart defect is related to this diagnosis. Although it is another health roadblock for Caroline, we know she is in good hands with the amazing rheumatology team and will continue to thrive under their watchful eye.
Whatever the future may hold, our family is forever grateful for everything that the University of Iowa Children’s Hospital has done for us, and families like ours all across Iowa. We are all extremely blessed to have a world-class children’s hospital in our home state.
Mason Miller
After a very healthy and normal pregnancy and delivery, new parents, Amanda and Brad Miller, began an unanticipated journey with baby son Mason. Today, eight years later, frequent trips to UI Stead Family Children’s Hospital have become routine. Names and detailed explanations of many pediatric illnesses, common and rare, roll off their tongues. They are well versed in everything from severe acid reflux, hernia surgery, high blood pressure, Celiac Disease, Kawasaki Disease, Pediatric arthritic issues, and abdominal migraines. As many babies do, Mason struggled with acid reflux from the time he was born. Unrelated, at four weeks, he required hernia surgery. At six weeks, he developed high blood pressure. Pediatric Nephrology treated him, and within six weeks his blood pressure normalized. All the while his acid reflux worsened. At eight months, he had his first endoscopy and started medication to treat the condition. At four months, he had a second hernia repair surgery. Before his second birthday, his symptoms of acid reflux were getting worse; he was throwing up, suffering diarrhea, and losing weight. Mason was seen by UI Pediatric Gastroenterologist, Dawn Ebach. He was diagnosed with Celiac Disease, an intolerance of wheat and gluten. A very special and limited diet manages the disease, but did not end Mason’s GI issues. Today, he continues to deal with Acid Reflux, and has had five endoscopies and one colonoscopy. At age four, a case of strep throat persisted. After a week of high fevers, rashes, swollen face and tongue, and a lot of tests, Mason was diagnosed with Kawasaki Disease, a rare childhood illness that causes inflammation of the mucous membranes, lymph nodes, walls of the blood vessels, and the heart. It took 13 weeks to treat, during which he developed inflammation and pain in his joints. He required the specialized care of a Pediatric Rheumatoid Arthritis Doctor, Polly Ferguson. Because Kawasaki can attack the heart muscles, Mason needed an Electrocardiogram and Echocardiogram every three months. Add Pediatric Cardiology to his healthcare team. After a year of this careful monitoring, thankfully, it was determined his heart was not affected by the Kawasaki disease. Very quickly, Mason got strep again, times 10. Just coming off his Kawasaki symptoms, it really took a toll on his body. He got Post Strep Reactive Arthritis and his joint issues intensified. Through a drug regimen of antibiotics to prevent strep, and prescription Naproxen to ease his joint pain and inflammation, he made it a whole year without getting sick! He still deals with joint pain and swelling, on and off, and remains under the care of Pediatric Rheumatoid Arthritis doctor Polly Ferguson. No sooner had this strep-free year passed when Mason started doubling over with stomach pain. He would cry in pain for hours at a time. After extensive testing, he was diagnosed with abdominal migraines. He now takes daily medicine to prevent the abdominal migraines, but if he misses a dose, he suffers an attack. He can take a pain medicine that eases the attack and gets him feeling better in a few hours. For the past year, Mason has dealt with fevers on and off, sometimes 3-4 times a week, with no other symptoms. He often struggles with joint pain during these fevers, but they are short lived episodes. Dr. Ferguson is following him for these, and fortunately, they seem to be easing somewhat these last few months. He receives regular physical therapy for knee pain.Zayden Miller
Younger brother Zayden gave everyone a real scare when at four weeks he aspirated on gripe water, (a remedy for gas in babies) and stopped breathing. Mom, Amanda, called 911, and once they got him breathing again, he was taken to UI Stead Family Children’s Hospital. After this episode, they noticed Zayden seemed to have trouble swallowing. At four months, he started treatment with a swallow specialist at UICH. Six months of treatment helped improve his ability to swallow and they discontinued this therapy. At six months, Zayden got a severe case of RSV (Respiratory Syncytial Virus), a common virus that infects the respiratory tract of children under two. He spent two days in UI Stead Family Children’s Hospital. Since having RSV, Zayden continued to struggle with respiratory issues, including pneumonia and Asthma symptoms. He has always been an open mouth breather when sleeping, and started to snore at night. For the last 18 months, he has developed a horrible cough that causes him to vomit during the night. The Millers were referred to the same Gastroenterologist who treated Mason. She began treating him for acid reflux, like his brother. His cough improved, but still didn’t go away. During an endoscopy, Zayden stopped breathing twice. Unable to continue, they were referred to ENT. After some tests, ENT removed his tonsils and adenoids. After being observed in the hospital, they felt confident that due to his adenoids, he had never been able to breathe normally through his nose and they were the reason for his respiratory issues. Zayden continues to deal with Acid Reflux, and both boys line up like little birds each night for their medicine. None of this has slowed the boys down and kept them from the usual bumps and bruises most little boys experience. 2016 was a year of scary accidents for the boys. On the last day of school, Mason rode his bike off a retaining wall and was taken to ER and treated for a concussion. Only four days late, Amanda was carrying Zayden into the house from the garage and tripped on a shoe and dropped three-year-old Zayden. He split his head open and lost consciousness. Amanda called 911 and Zayden was rushed to the Emergency Room, where he went through a battery of tests that thankfully, ruled out a more serious head injury. He was stitched up and released late the same night. A few months later, at a neighborhood outing, Mason tripped and burned his eye on a burning fire pit, introducing the Millers to the extraordinary UI Burn Unit. Thanks to the advanced care, Mason’s eye is as good as new. The Millers feel beyond blessed to have this amazing hospital right here in Iowa, in their backyard!
Christopher Turnis
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.
Luke Baustian
“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.
Megan and Natalie Riddle
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.
Bridget, Caroline and Jamie Schmid
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.”Korri Hoeger
Update
Korrie continues to do wonderful with Uncle Mitch’s kidney! She is now in college and engaged to be married.
Alivea Carnahan
Update
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.”
