Healing Hearts with Hope

Juan C. Alejos, MD, Professor Division of Pediatric Cardiology Mattel Children’s Hospital- UCLA Los Angeles, California
Juan C. Alejos, MD, Professor Division of Pediatric Cardiology Mattel Children’s Hospital- UCLA Los Angeles, California
Hearts with Hope (Corazones Con Esperanza) Foundation was incorporated in 2005. However, its roots go back many years before that — it was the result of many years of volunteer efforts in Latin America. Hearts with Hope started out as a simple dream. My father was a pediatrician who had been raised in Lima, Peru. He came to the United States for residency in 1960 with every intention of returning home. However, as the time neared for his return, Peru was in political upheaval and a military junta took control. Returning to his home put at risk the dreams he held for his young family, so he remained in the new land. I grew up admiring him greatly. He was a living example of the importance of caring for others. He was grateful and proud of his new home, but taught us the importance of remembering your past. He passed away after a short illness during my internship. He had stood with pride at my graduation the year before; however, he did not get the opportunity to see me complete my training. I traveled to Peru to search out a connection to him and found myself visiting the Institute of Children’s Health. I was struck by the lack of resources, both financial and material. I was overwhelmed by the eagerness of the Peruvian physicians to learn and the complexity of the patients they were faced with. I was asked to return to Peru to work side by side with the physicians and help develop their program for the treatment of congenital heart disease. The treatment team for our first visit was comprised of three physicians (two pediatric cardiologists and a cardiothoracic surgeon), and the travel was financed through the goodwill of the Peruvian American Medical Society. Ten missions later, Hearts with Hope sent a group of 62 volunteer physicians, nurses, dentists and humanitarian volunteers, including college and medical students, to visit Peru for a three-week period. All missions since the first have been completely funded by donations. The initial missions were to Lima. The capital had a population of 12 million and was the home of the country’s only children’s hospital. Hearts with Hope’s initial missions were limited in scope, but we were impressed at the extent of the pathology we witnessed. We saw the natural history of several conditions that had significant impact on families. We also noted the logistical difficulty, since children from throughout the country had to make their way to Lima for diagnosis and treatment. Some traveled for months by foot, car or bus. Many came with one parent while the remaining family stayed behind. In some instances, fathers kept infants at home while the mother traveled to Lima with the affected child, thereby assuring that they would return home. After the diagnosis was made, the treatment plan was decided. When our team was there, we scheduled patients based upon need. The normal protocol required that families obtain all the necessary medications and supplies. This ranged from bed linens to anesthesia to medications. This sometimes would take months to years, and quite often, children became inoperable. Even the children who could obtain the supplies in time might wait for months before getting to surgery. As a result, these families needed to stay in a strange city until their chance came. This led to a crucial decision. What followed was the development of our five-year plan. We decided to develop a program in Arequipa, which is the second largest city in Peru. Until our arrival, there had never been surgery performed on a child with congenital heart disease in Arequipa. Lima was also receiving medical missions from around the globe, so we felt that we were of more benefit in Arequipa. Of course, that also meant that we needed more support internally. About Hearts with Hope Hearts with Hope’s mission is to provide medical and humanitarian assistance to children with congenital heart disease and their families in Latin America. Our teams are composed of pediatric cardiologists, pediatric cardiothoracic surgeons, perfusionists, pediatric cardiac nurses, anesthesiologists, dentists and humanitarian volunteers. We work alongside our Peruvian counterparts from the start. Our goal is not only to provide care for children, but to help develop a program to evaluate and treat children with congenital heart disease. Our program covers not only care of these children, but also diagnosis as well. Our cardiologists work in the echo lab and clinic as well as side by side in the cardiac catheterization lab performing diagnostic, interventional and electrophysiologic studies. Children are evaluated and cared for based on greatest need without concern for insurance. They undergo surgical repair or palliation and are subsequently cared for in the Cardiac Intensive Care Unit by both the Peruvian and Hearts with Hope physicians. Volunteers come from across the United States and find us by word of mouth or more likely, the Internet. Language is not a barrier. We are joined together by the common desire to care for children with congenital heart disease. Typically the Arequipa mission takes place in the fall of each year. Preparations start months prior with discussions with team leaders and selecting the right number and composition of team members. Feedback is solicited from the previous participants and adjustments are made to team size and composition. Each team is then responsible to solicit and collect donations for the mission. Packing parties help to unify the team and establish team spirit. Containers are prepared and sent to the port city of Callao. The freight company has even become a major provider of humanitarian supplies, including toys, clothing and furniture. Their assistance in transporting equipment allows us to be assured that all the necessary equipment is in place before our arrival. This simple fact has long been found to be an issue for many missions, preventing them from reaching their goals. An advance echo team precedes the main group in order to evaluate and select patients to be considered for intervention. The plan is to start surgical and catheter interventions on Monday morning. Experience has taught us that cases should be selected several days in advance and a “back-up” prepared in order to avoid an empty operating room or catheterization lab. Overall our goal is to operate on a minimum of two cases per day; however, in a situation where no more than one surgery is performed per week, the system is poorly designed to handle this type of patient load. Though the system is unwilling, Hearts with Hope has found everyone from the cleaning crew to the chief surgeon to be nothing but enthusiastic about our presence. We have found that human nature wishes to be pushed to excel to its highest limits. The staff of Carlos Alberto Seguin Escobedo Hospital strives to make us feel at home. Their work is diligent and typically we are able to reach our goals. Since Heart with Hope was founded, we have been on seven missions. We have performed 56 surgeries and 135 cardiac catheterizations, including atrial septal defect and patent ductus arteriosus closure via device. Also included in this number are numerous transvenous pacemaker and AICD placements as well as EPS and radiofrequency ablations. The Peruvian cardiologists are trained to continue this transvenous approach. All care was provided working alongside the Peruvian counterparts and at no cost to the family. Patients are selected based on need and our ability to provide them with appropriate interventions. Memorable Cases During the missions of Hearts with Hope, each and every patient has been important to us; however, several of these children have stood out. Patient Thaylee was an 11-year-old girl who presented with shortness of breath and exercise intolerance. Her mother persisted with our counterparts in Arequipa until she found out where we were staying. The family waited in the hotel lobby around the clock for several days until our arrival. They asked if we could evaluate Thaylee. We arranged to meet her at the hospital on our first full morning, and an echo demonstrated a large atrial communication. She was evaluated for catheter closure, but was determined to have a defect so large that it was not compatible with device closure. After a brief discussion, she was scheduled for surgery. In order for her to undergo surgery, Thaylee’s family needed to find blood donors to provide the blood components necessary for the surgery. Many offered to donate; however, pride did not allow them to accept. Instead they went to the local army barracks and paid four different recruits to donate the necessary blood. With this accomplished, she underwent surgical closure of her atrial septal defect. She was seen in the Intensive Care Unit following surgery smiling at the team and giving us the “thumbs up” sign. Shortly afterwards she was weaned from the ventilator, and within a short time, she was chatting with the team members and the staff. She was discharged shortly afterwards with her smiling family at her side. She came to the hotel every night to say hello to us for the remainder of our stay. The family bought small gifts for all to demonstrate their gratitude. Thaylee kept in touch with us after our return to the United States. She kept us informed of her accomplishments — from carrying the flag for the annual parade, to being elected class president. Upon our return, the first face we saw at the airport was hers. Several years later, she has grown and is now a volunteer for the medical group that we work with. Her compassion and understanding is magnificent, and she has professed her desire to become a cardiologist so that she can continue the work she sees as being so important. Roadblocks and Goals for the Future We have found our work to be exhausting yet rewarding. The children and families of Peru are always so grateful. They approach us with a smile and hope that we will care for their child. We know we need to care for those in the most need, but we keep track of everyone. Unfortunately, there are still issues out of our control, such as patient illness, lack of ICU beds or lack of blood. Overall, we are proud of our accomplishments yet realize that there are many issues which require improvement. Our aim has been to develop a five-year plan with the end goal to support a pediatric cardiac program in each host hospital that would be able to perform one surgical and one catheterization per week. We have pledged our support beyond the five-year mark, with the goal being to provide consultation support on site. We have found that it is difficult to train a surgeon or a cardiologist in the span of a two-week mission. Therefore, we have initiated a program to assist in year-round training for these subspecialists. We are also recruiting a surgeon from Lima with training in Pediatric Cardiac Surgery who has committed to traveling to Arequipa on a monthly basis. Thus, we have provided the infrastructure for them to sustain their own program. The cardiologists have become adept at diagnosing and triaging their patients; however, they require more hands-on experience. Thus, our role has become one of supervision. Also, we have found equipment issues. We are easily aware of the large items and are able to typically provide these; however, it is the seemingly insignificant smaller items that can cause a major delay in the mission. Transformers and surge protectors are a hot commodity. There are many times that delays have been solved by a trip to the local hardware store. As for medical equipment, we have developed a group of team leaders responsible for determining needs and collecting equipment for the mission. We have truly progressed from the first mission where every piece of donated equipment was transported to careful evaluation so that precious space and funding is not used for equipment that will have on worth during our mission. Summary Hearts with Hope has been incorporated for five years. It has progressed from one person typing up letters and making phone calls to solicit donations, to an organization with over 20 volunteers who dedicate their spare time to making this work. We currently have numerous fundraisers across the country and volunteers from each corner of the United States. As well as medical, dental and humanitarian volunteers, we have started to include students from both the high school and college level. Presumably these students have an interest in medicine, and we strive to demonstrate the importance and worthiness of international humanitarian medicine. We are projecting additional missions to Cuzco and Chiclayo (Peru), Belize, and El Salvador. Interested volunteers or those seeking further information should visit our website. We all believe that through these small steps, we can make a difference in the life of a child. For more information, please visit: www.heartswithhope.org