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.”