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.
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.
UpdateKorrie continues to do wonderful with Uncle Mitch’s kidney! She is now in college and engaged to be married.
UpdateSince 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.”