One patient leads to another.
Over 24 years ago there was a 12-year-old Nigerian girl who was in desperate need of surgery to correct her congenital heart defect in order to save her life. Unfortunately, she had lived with her defect for too long and her condition was too far gone. Dr. William Novick, as a resident in cardiac surgery at the University of Alabama, learned that if she had received treatment sooner, she could have had the corrective surgery she needed to save her life. Dr. Novick’s mentor, Dr. Albert Pacifico, performed her operation, only to extend her life by a few years.
Dr. Novick, plagued with nightmares of this lost life, was determined to save other children. In the midst of Croatia’s war to break away from Yugoslavia, Dr. Novick accepted an invitation to go to Zagreb to operate on children suffering from congenital heart disease. Here initiated his program of performing pediatric cardiac surgery, providing the skills and training necessary for that country’s doctors to go on and save their own children. This first trip, and the program of saving lives paired with education, led to the creation of the International Children’s Heart Foundation. On that first mission trip to Croatia, Bill operated on 14 children, the first of whom was a 10-year-old boy named Zoran, who had tricuspid valve atresia. The tragedy of the Nigerian girl led to the triumph of this boy receiving his surgery in 1993. Then 6,999 children later, led to a hospital in Tegucigalpa, Honduras in 2014 where a boy named Gabriel was waiting for his surgery.
Gabriel is a 2-year-old boy from Tegucigalpa who, at 4-months-old, was diagnosed with double outlet right ventricle defect and ventricular septal defect. An only child, his mother, Gabriella, is raising him by herself. She works at a local motorcycle shop and their home is 15 minutes away from the hospital. Gabriel loves to play soccer, rather than stay indoors and watch TV. Due to his heart condition, Gabriel was forced to stop activities such as soccer. When Gabriel was 11-months-old, the doctors informed his mother that the treatments he was on were not working. As the surgery Gabriel’s heart required was not available in Honduras, the International Children’s Heart Foundation was his only shot. Gabriel was scheduled to receive treatment during our Babyheart mission in October of 2013, but he arrived sick and therefore, inoperable. His mother continued to hold onto hope and never give up. Babyheart wouldn’t give up either. On our 20th medical mission trip to Honduras, Gabriel received his operation.
On March 5, 2014 at 12:43 local time Gabriel became the 7000th child to receive a life-saving operation at the hands of a Babyheart surgeon. In this case, Dr. Max Sharma, Babyheart volunteer surgeon, operated on Gabriel. Dr. Kathleen Fenton, who has been with ICHF since 2006 heading up the program in Nicaragua, scrubbed in to assist. The nurses in the ICU said Gabriel was very playful, but shy and didn’t like getting his picture taken. They would have to sneak up on him and snap a few quick pictures before he noticed. Just like our other Babyheart patients, he was unique with his own special lively personality that only grew more as he recovered at the expert hands of Babyheart volunteers in the pediatric intensive care unit.
His mother was very grateful and said words cannot express what her heart feels now that her son’s heart is healed. One day, she hopes he will grow up to be an architect and live a healthy life. Gabriel recuperated well, as thousands of children before him did and walked out of the ICU two days later. Now, Gabriel has returned home to continue to recover, grow, and play soccer!
Six more children received operations the day of Gabriel’s operation, bring ICHF’s total operations to #7006. There was actually a running competition as to who would get patient #7000. Because ICHF rarely operates only in one place at one time there were two other missions occurring at the same time as Honduras. There were two programs operating on the other side of the world in Benghazi, Libya and Nasiriyah, Iraq. Both medical teams were communicating with Dr. Novick and ICU Coordinator & Clinical Researcher, Frank Molloy, as to who would obtain the lucky goal of being the medical mission trip that achieved the 7000th pediatric heart surgery.
Special recognition must be paid to ICHF’s collaborating charity in Tegucigalpa, Helping Hands for Honduras, led by Chairman and CEO Ron Roll. Helping Hands for Honduras have been an invaluable part of the Babyheart mission offering in-country logistical support and helping arrangements for patients to come to the hospital for treatment.
There’s a saying: “a great journey begins with a single step”. Dr. William Novick’s and ICHF’s journey started with a single heart, and that first healed heart in Croatia has led to 7000 hearts. 7000 children, 7000 hearts, millions of miles flown by medical volunteers, 33 countries. 368 mission trips. And there are no signs of slowing down as the medical missions continue. According to CHD global statistics there are still 6 million children waiting for heart surgery worldwide. Babyheart is striving to reach them all. ICHF will hopefully soon be celebrating 10,000 healed hearts!
Congratulations to our Babyheart team of volunteers for this accomplishment!
Babyheart team members who served on this mission:
Dr. Max Sharma, Pediatric Cardiac Surgeon
Dr. Kathleen Fenton, Pediatric Cardiac Surgeon, ICHF
Nitasha Joyner, Perfusionist
James O’Leary, MD, Anesthesiologist
Nelson Varas, MD, Anesthesiologist
Mark Gelatt, MD, Cardiologist
Joel Lutterman, MD, Interventional Cardiologist
Enrique Carrion, MD, Intensivist
Barbara Ferdman, MD, Intensivist
Nita Mohanty, MD Intensivist
Stacey Marr, PICU Nurse Practitioner & Educator, ICHF
Lindsay Bailer, Respiratory Therapist
Roy Morris, Biomedical Engineer, ICHF
Andrea Yuel, ICU Nurse & Educator
Maggie Wong, RPT
Laura McKenzie, ICU Nurse
Colette Brodt, ICU Nurse
Justine Mize, ICU Nurse
Sarah Harrison, ICU Nurse
A common aspect of children suffering with congenital heart defects is Down syndrome. Many cases Babyheart teams care for on missions are children with both a heart defect and Down syndrome. Also sadly, some of these children come from orphanages, whose parents have abandoned them, unable or unwilling to offer proper care for their child who requires special needs. This is what happened to a little Macedonian newborn named Mario. Born with Down syndrome and multiple heart defects he was brought to our Babyheart team on the mission to Skopje, Macedonia. His defects caused a severe depletion in oxygenated blood from getting to his body. He had to fight for every breath. That was until he received a successful operation by Babyheart surgeon, Dr. Marcelo Cardarelli, a ligation PDA and a VSD closure. Then he was off to receive post-operative care in the ICU where he got to meet Respiratory Therapist, Kim Kimball, an ICHF medical volunteer. The Babyheart team saved his life but even with a new and healthy heart, he needed saving of another kind. The staff at Mario’s orphanage did the best they could, but the ratio of 1 to 15 of caregiver to child was not sufficient, especially for the special healthcare needs required by Mario. His chances following a return to the orphanage were not good. What Mario required was something he never had since he came into this world, a kind and loving family. An adoptive family could provide him with a healthy upbringing and a normal life.
That’s where Kim enters the story. An adoptive mother of three children herself, she is very sympathetic to the plight of abandoned children, without hope and not given a chance. Her work as a Bayheart volunteer helped save Mario’s life but Kim did not stop there. She thought about his quality of life long after his heart surgery. She was compelled to do something for Mario and help find him a family. In effect saving his life again from languishing as an unwanted orphan due to the stigma of having Down syndrome and a heart defect. Mario now has a new heart and new hope. “All he needs is a little love, nourishment, and care,” according to Kim.
Kim knew where to go for help. She contacted the National Down Syndrome Adoption Network (NDSAN), a US-based organization whose mission is to ensure that every child with Down syndrome has the opportunity to grow up in a loving family. All it took was an email and a Facebook post and Stephanie Thompson, co-director of NDSAN responded to Kim to begin the process. Then Kim reached out to Macedonia’s Minister of Labor and Social Policy, Monica Bozinovska. Kim was initially not optimistic about receiving a prompt reply from the government, even from a small country like Macedonia. Kim heard from Monica the very next day. She connected NDSAN with Monica and the search for an adoptive family began immediately. There was no luck in Macedonia trying to find a family willing and able to care for a child of Mario’s needs. In America Stephanie was able to locate three prospective families interested in Mario.
“We were so thankful Kim and the International Children’s Heart Foundation were at the right place at the right time,” said Stephanie. “And we appreciated Kim contacting us to identify families for Mario. And great news! One of our families has been identified, and if all clearances go through, they will be his forever family!”
This family Stephanie found through her registry remarkably has experience having adopted another baby with a heart defect and Down syndrome. (they will remain anonymous during the clearance process) Mario will be a perfect fit and a beautiful addition!
Mario continued to receive care in the ICU. The Babyheart volunteers brought clothing and formula up until his recent discharge and return to the orphanage. Monica is now working directly with the family to complete the international adoption process which, if all goes well, usually takes about three months. In this case the mechanisms of bureaucracy moved rather swiftly. Hopefully soon Mario will be with a loving family in the USA. ICHF Clinical Educator/ Nurse Coordinator, Frank Molloy teases Kim by calling her a “serial adopter,” for the number of children she’s adopted. She has adopted 3, ages 6, 5, and 3 and gave birth to one of her own. Her maternal instincts cannot be turned off and her large heart meant to care for children can’t be stopped. That is why she is a Babyheart volunteer traveling the world, attending up to 4 missions every year, and is at the very heart of how ICHF is able save lives, sometimes twice!
The National Down Syndrome Adoption Network maintains a registry of 200 families that are ready to adopt a child with Down syndrome. You can learn more about the NDSAN at www.ndsan.org and www.facebook.com/dsadoption.
It is a rare moment in life when you get to see so many selfless people come together to help others. ICHF is honored to be an organization that hosts moments like these in 45 missions this year alone. For the past 20 years, ICHF has held missions where experts in pediatric cardiac care donate their time, money and skills to save the lives of children worldwide from congenital heart disease. These experts set aside much deserved time off from their careers to attend our missions and heal the hearts of children in need. Below is an excerpt from our guest blogger Babyheart PICU Nurse Educator and Coordinator, Farzana Shah, who has generously aided our missions for the past year:
“I heard of ICHF through a flyer in the ICU that I work at in Philadelphia…it’s like saying you met your future husband at the bar…not exactly romantic, but that was the seed. I did some research and heard only good things about Babyheart. I saw how many people are helped by this one organization and I was hooked. I had to learn more. So, I completed the online volunteer registration form and scheduled my first trip with ICHF to Najaf, Iraq in September 2012.” (During this mission, with the help of a team of volunteers including Farzana, we healed the hearts of 14 children with CHD’s. Farzana has now volunteered on five of our Babyheart missions).”
During her 4th Babyheart mission (our 14th mission to Guayaquil, Ecuador), Farzana helped save the life of a 5 year old boy named Ricardo. Ricardo suffered from a complex heart defect known as tetralogy of Fallot which is characterized by the combination of four CHD’s:
1. Pulmonary valve stenosis, due to the absence of his pulmonary valve, Ricardo’s pulmonary artery is abnormally narrow impeding blood flow from his right ventricle to his lungs.
2. Ventricular septal defect, resulting from the hole between Ricardo’s two ventricles permitting oxygen-poor blood from the right ventricle to mix with oxygen-rich blood from the left.
3. Right ventricular hypertrophy, characterized by a thickening and enlargement of the muscles of Ricardo’s right ventricles.
4. Overriding aorta, where the main artery exiting his left ventricle appears at the opening of both his left and right ventricles, permitting oxygen-poor blood to flow through the VSD into his aorta.
Because of the severity of Ricardo’s defect, he suffer from “blue” spells where he would turn blue due to the lack of blood permitted to the lungs preventing oxygen to reach his body. Without a corrective operation, the lack of oxygen would not only damage Ricardo’s heart, but also his brain.
Ricardo would need to receive multiple operations. When Ricardo was 2, his heart was in such bad condition, Babyheart Founder Dr. William Novick had to perform a preliminary procedure to prepare him for his future operations. Ricardo received two more corrective procedures this year on July 30th from Babyheart surgeons, Dr. Marcelo Cardarelli and Dr. David Maldonado Gonzalez. He will come back early next year to be evaluated for his next operation which will hopefully be his last.
Ricardo came to visit our team during our 15th mission to Guayaquil this past September. While playing his all-time favorite, Angry Birds, on Farzana’s phone, she recounted her passion for helping these children:
“I can’t say enough about the positive experiences that I have had working with ICHF. With each good and sad situation, you learn to bring the best care possible to these children while adapting to different environments and dealing with the lack of resources, while also ensuring that you are supportive to the family and caring for them as well. Seeing Ricardo come back this mission, and looking like a completely new child; inquisitive, smiling, happy- I could have kissed his cheeks till they turned red and it still wouldn’t have been enough to show how happy I am to know he is doing well.
My experience with ICHF has given me so much growth, both personally and professionally. The ability to be flexible and open to learning has made me a stronger, better nurse. I have worked with some of the most talented people that I would have never had the opportunity to meet if it wasn’t for ICHF and the friendships I have made are incredible.
These trips are like little the wonders of the world…you meet everyone the first Sunday of the trip, some familiar faces, some are first timers, all from different walks of life, and everyone clicks. We find a rhythm and our common goal: to help…help the children, help the families, help our local colleagues learn, help make the lives of those people we come across a little better. When you are asked by someone “how long have you all worked together?” They don’t believe it when you say, “3-4 days”. It’s unexplainable even to me still, the teamwork and dedication that happens in just two weeks with so many variables- a relationship that would take years to build, comes together in just days.
If I could thank each donor and sponsor for making it possible for me and others alike, who have this passion to breakdown social and economic walls in order to provide a child a chance at life; it could only be expressed by looking at Ricardo, and seeing that he has a chance, because of them.”
Lifetime with a Healthy Heart on the Horizon!
Ufuk is a Turkish name that means Horizon and Ufuk was part of ICHF’s inaugural medical mission to Macedonia and was the very fist arterial switch ever done in Macedonia. It was a complicated heart defect that required a difficult surgery that only ICHF’s Dr. Novick could perform. When the team left, Ufuk was still in the ICU with a wound infection but was recovering well and eating. He had his operation at 15 days of age, on March 28th by Dr Novick, and was 3.6kg at the time. He recently returned with his family from his hometown south of Skopje to see the next mission team and be evaluated. He came back to receive his ECHO by our Babyheart team and the local cardiologists. He is just over 6 months old, is a healthy 7.8kg and thriving and better than ever! Ufuk has a new life on the “horizon” with his new heart.
Frank Molly, ICHF ICU Coordinator and Clinical Educator, helped get us the news of Ufuk’s recovery.
Donation Already Saves Lives in Macedonia
Everyone knows the great work of Arkansas Children’s Hospital’s efforts to save lives at home but did you know they are active in saving lives abroad? By making a simple donation of equipment to the International Children’s Heart Foundation they are doing just that. Thanks to the collaboration of 2 biomedical engineers, Kevin Haralson, Director of Clinical Engineering /Biomed at ACH and Roy Morris, biomedical engineer for ICHF.
In order to provide the best technological care for their patients Kevin ordered a new heart-lung bypass machine for the hospital. He now had an older model on his hands that was still fully functional machine but had to be completely discarded. Kevin did not want to see it go to waste and he knew who to call, Roy Morris of ICHF. They both worked in the same field together in Little Rock when Roy was in the private sector. Now Roy works for Babyheart full time and has done an outstanding job of partnering with hospitals around the country to obtain equipment donations for medical missions. In this case he needed a heart lung bypass machine for a medical mission in the East European country of Macedonia. The function and purpose of this equipment is when an ICHF pediatric heart surgeon must stop the heart in order to operate on it. The child’s blood is then diverted and oxygenated via the heart lung bypass machine, operated by a perfusionist, thus keeping the child alive. These machines are expensive and very difficult to come by. Without this equipment the operations could not be performed. Children would have to remain on the waiting list for surgery and many young lives are put at risk, some will die. Then Arkansas Children’s Hospital came through with their donation and the mission could continue. Kevin Haralson facilitated the donation and ensured the equipment was in good working order. Then Roy got it shipped overseas to the operating room in a Skopje, Macedonia clinic, ready for surgery! The donated bypass machine was put to use by professional medical volunteer perfusionist, Swee Huang, and it has helped the mission in Macedonia already operate on, and save the lives of, over 30 children! According to Roy and Kevin, with proper maintenance this machine will last medical missions for at least another 5 years. With ICHF running 3 Babyheart missions per year, operating on 20 children per mission for another five years, this Arkansas Children’s Hospital donation will help save the lives of at least another 300 children!
Babyheart Team Gets to Work Before De-boarding Plane
On a flight to Kharkiv, Ukraine an older man that felt dizzy and disoriented. Then the man fainted and collapsed at the rear of the plane. Luckily, members of an ICHF Babyheart medical team were on board traveling to the next mission in Kharkiv. Dr. Marcelo Cardarelli, PICU Nurse, Roslyn Rivera, and Dr. Herwis quickly got up to help him. As many ICHF medical volunteers will tell you, you must travel well prepared on a medical mission. Roslyn carried a pulse oximetry & wrist blood pressure cuff that they used to check the man’s vitals. They discovered the man apparently had a history of low blood pressure and he appeared to have fainted due to that. He ended up being ok by the time they landed, and refused further medical attention. He walked off the plane himself & didn’t utilize the ambulance they called for him. All in a day’s work for a Babyheart team.
Elizabeth Set to Receive Heart Surgery
Elizabeth Torres’ mother submitted a request for assistance with the International Children’s Heart Foundation earlier this year to help her daughter receive surgery. She is from Ecuador, has been evaluated by a doctor and on a list for surgery but her defect is complicated. Only Dr. Novick has the ability to correct her defect, called an Ebstein Anomaly, a defect of the tricuspid valve which causes a backup of blood into the lungs and insufficient oxygenated bloodflow to the body. Elizabeth is suffering from this heart defect now and it will eventually take her life if we don’t act. Well, Babyheart donors and supporters did act! Via an online crowdfunding campaign on Gofundme.com, they contributed to her heart surgery, which is a fraction of what it would cost here in the United States. Now Dr. William Novick is on his way to a Babyheart mission in Guayaquil to perform the operation scheduled for Monday, Sep. 30th. We are happy for Elizabeth, her mother and family.
Below is an excerpt of a letter from Elizabeth’s mother.
….I know you to be a people of great heart and that have helped restore hope to many children who have all the will to live, I ask with all my heart to help me with my girl and cause I have great suffering and emptiness in my life if I lose her and it is the light that illuminates our lives with strength and love of life has given me the courage each day.
On a Friday evening in August at the historic Cadre building in downtown Memphis the International Children’s Heart Foundation (ICHF) honored some very special guests with the Tour of the World Donor and Volunteer Recognition Dinner. Awards of service were given to those who supported the global medical missions with donations of funds and time, helping build Babyheart into what it is today. ICHF used this occasion to celebrate 20 years of Babyheart medical missions going back to Dr. William Novick’s first mission in war-torn Croatia in 1993. Jonathan Smeltzer provided music for the night and an eclectic, global cuisine was served to guests. The authority on all things Memphis, Jimmy Ogle, came to emcee and shared some unique insight on the impact of Memphis’ medical history upon the world and how Babyheart will forever be an integral part of that special history.
A living part of that history came to speak and share her Babyheart story. At the age of 12 Dilya Cleveland had been suffering from her heart defect all her life in the former Soviet republic of Kazakhstan. Nobody could help her with her condition until her family learned that Dr. Novick and ICHF was coming to their country on a medical mission. Dr. Novick did for Dilya what no other doctor could– cure her heart and give her a normal life. Dilya shared her remarkable story of growing up to be an intelligent, vibrant member of society, obtaining a degree in electrical engineering. But she still had a desire to be a part of the medical community and emigrated to the US and became a registered nurse. Now she is looking to apply to medical school. She has already volunteered on a number of Babyheart medical missions, representing the full cycle of ICHF’s gift to the world. She closed her speech with a tearful hug of Dr. Novick, thanking him for giving the gift of life to her and so many others.
Seven awards were bestowed upon honorees throughout the night for their service to the world’s children suffering from congenital heart defects. Dr. Novick took the stage to present the first award to honoree, Donald W. Pemberton, who received the John B. Tigrett Visionary Award. Back before ICHF became a formal 501c3, Donald’s daughter was volunteering on Dr. Novick’s medical missions. Donald, a lifelong Memphis attorney, donated his time to help Dr. Novick obtain the charter he needed with the government to become a full fledged non-profit. The award’s namesake, John B. Tigrett was also instrumental in the early days of ICHF by serving as a conduit to Fred Smith of FedEx, who was so moved by Dr. Novick’s work that he pledged an annual allowance of free shipping of medical supplies and medicines to ICHF mission locations throughout the globe. This donation of freight services has lasted twenty years and Fred Smith was recognized by ICHF Executive Director, Terry Carter, with the Founder’s Award in Global Achievement in Healing Hearts. In his place to accept on behalf of Fred Smith and FedEx was Carl Asmus, Vice President, Global Supply Chain Solutions & Market Development.
Other honorees for the night, no less special and just as important to the ongoing life saving work of ICHF, was Rick Porter, representing the Gift of Life and certain Rotary clubs who have donated hundreds of thousands of dollars and saved countless young lives. Robert Cox of Alert Terminal Warehouse, received an award for donating vital warehouse space to ICHF supplies and equipment. Joe Wieronski, of ANF Architects, although absent due to an injury, received an award for his company’s dedication to ICHF’s fundraising events in the Memphis area. Companies such as Edwards Lifesciences and Medtronic were given awards for their longtime donations and support. Memphis’ own Mrs. Ann Jackson received an award for exemplary service to the Babyheart mission through her funds and time. She even opened up her home to ICHF volunteers stuffing envelopes for hours for direct mail campaigns. Her award was named for Sandra K. McMahan, who tirelessly worked for the foundation for over a decade as Administrative Director until she passed away after a long and heroic bout with cancer.
The evening closed with the world premiere of ICHF’s short documentary, “Babyheart,” shot during a mission in Kharkiv, Ukraine. After Dilya’s story, the film, and Terry Carter’s story of a heartfelt interaction with the father of a Babyheart patient on a recent mission trip to Ecuador, there was not a dry eye in the house. ICHF wishes to thank all our honorees, our special guests for the evening and all our valued donors and volunteers.
See links below for event coverage.
Dinner pics (by photographer Jo Teri)
All Pro Cornerback for the Chicago Bears, Charles Tillman, has recently offered his support for congenital heart defect awareness by appearing with Dr. William Novick in a PSA. Shot in March of 2013 the PSA is due to be released later in 2013. ICHF is thankful for such great supporters as Charles Tillman! Read the full story here!
A Flat World, Full Hearts….Facebook, Globalization and Technology come together to Mend Baby’s Hearts
ICHF receives thousands of requests for assistance from parents of children with congenital heart defects all over the world. Babyheart Volunteer OR Nurse, Becca Davenport, had the opportunity to sit with one of these parents and hear her inspirational story of how a group of people from different parts of the world came together to save her child.
Last October, we received a request from Corazones Guerreros Unidos (Heart Warriors United), a Facebook support group for Latin American families of children with congenital heart defects. They had a mother in Ecuador whose two year old daughter was given little to no chance of living because of her multiple heart defects. When Paula was born, she suffered from a small heart murmur. A few months later, Paula’s parents were informed that the heart murmur was even more pronounced and that their baby’s blue-tinged skin color was a sign of low-oxygenated blood. Paula would need an echocardiogram in order to determine her condition. After an agonizing wait, the echocardiogram result’s arrived. Unfortunately, they revealed that Paula suffered from multiple heart defects, several holes in the septum of her heart, and consequently pulmonary hypertension. In the United States these defects are fairly easy to treat if detected by doctors early enough, and subsequently done when the baby is very small. However, in Ecuador there are no resources for children to undergo the necessary cardiac surgery to fix these issues, and thus the doctors treating Paula had nothing positive to tell her parents, only that there was no hope for their daughter.
Paula’s mother was especially distraught to hear that their child’s doctors had nothing to offer them, and it was at this time that she decided to take matters into her own hands. Paula’s parents invested many long hours pouring over the internet, desperate to find someone who could help the young girl. It was a few months after the search that the Facebook support group for Latin American families heard of ICHF. They were astounded to find a non-profit organization that performs life-saving cardiac surgeries all over the world, and even in their country of Ecuador! With the help of the friend from the group as a translator, Paula’s parents were able to communicate with the ICHF, and they were nothing short of persistent, as they knew this might be the only organization able to save their baby’s life.
After reviewing Paula’s medical records, Paula’s family was advised to bring their daughter to the Hospital del Nino Dr. Francisco de Ycaza Bustamante for our next Babyheart mission to Guayaquil, Ecuador. Two months after initially contacting the International Children’s Heart Foundation, Paula and her family undertook the 7 hour trek (via bus) to Guayaquil, Ecuador, where surgeons would be able to fix their baby’s heart. At last, the little girl received her life-saving heart surgery, courtesy of ICHF and the volunteers that make it possible. Surgeons repaired the child’s atrial septal defect and multiple ventricular septal defects (holes in the septum of the inner heart chambers). Two days in the ICU, a few more up on the recovery floor, and Paula was well on her way to healthy new start on life.
Paula’s mother was in tears at the end of the interview. She later said that she was not able to communicate in words the magnitude of the International Children’s Heart Foundation impact on her family’s life. She says that she feels forever indebted to the organization, and the medical professionals who have been able to save her baby’s life. Thank you to the donors and supporters, even if she will never be able to thank them in person.
En español: Un mundo plano, Corazones completo …. Facebook, la globalización y la tecnología se unen para reparar los corazones del bebé
ICHF recibe miles de solicitudes de asistencia de los padres de niños con defectos congénitos del corazón en todo el mundo. Voluntarios Babyheart OR enfermera, Becca Davenport, tuvo la oportunidad de sentarse con uno de estos padres y escuchar su historia inspiradora de cómo un grupo de personas de diferentes partes del mundo se unieron para salvar a su hijo.
En octubre pasado, recibimos una solicitud de Guerreros Corazones Unidos, un grupo de apoyo de Facebook para las familias latinoamericanas de niños con defectos congénitos del corazón. Tenían una madre en Ecuador cuyas dos años mi hija se le dio poca o ninguna posibilidad de vivir a causa de sus múltiples defectos cardiacos. Cuando Paula nació, sufrió de un pequeño soplo en el corazón. Unos meses más tarde, los padres de Paula fueron informados de que el soplo del corazón es aún más pronunciado y que su bebé azul teñido de color de la piel es un signo de baja oxigenada sangre. Paula necesitaría un ecocardiograma para determinar su estado. Después de una angustiosa espera, el resultado ecocardiograma ha llegado. Por desgracia, reveló que Paula sufría de múltiples defectos cardiacos, varios agujeros en el tabique de su corazón y la hipertensión pulmonar en consecuencia. En los Estados Unidos estos defectos son bastante fáciles de tratar si se detecta a tiempo por los médicos, y posteriormente se realiza cuando el bebé es muy pequeño. Sin embargo, en Ecuador no hay recursos para que los niños se someten a la cirugía cardíaca sea necesaria para solucionar estos problemas, por lo que los médicos que tratan a Paula tenía nada positivo que decir a sus padres, sólo que no había esperanza para su hija.
La madre de Paula fue especialmente consternado al saber que los médicos de su hijo no tenía nada que ofrecer, y fue en ese momento que decidió tomar el asunto en sus propias manos. Los padres de Paula invertido muchas horas que vierten sobre el Internet, desesperado por encontrar a alguien que pudiera ayudar a la joven. Fue unos meses después de la búsqueda que el grupo de apoyo de Facebook para las familias latinoamericanas oído hablar de ICHF. Ellos fueron sorprendidos al encontrar una organización sin fines de lucro que lleva a cabo para salvar vidas cirugías cardiacas en todo el mundo, e incluso en su país de Ecuador! Con la ayuda del amigo del grupo como un traductor, los padres de Paula fueron capaces de comunicarse con el ICHF, y eran nada menos persistente, ya que sabían que esto podría ser la única organización capaz de ahorrar la vida de su bebé.
Después de revisar los registros médicos de Paula, la familia de Paula se aconseja llevar a su hija al Hospital del Niño Dr. Francisco de Ycaza Bustamante para nuestra misión Babyheart junto a Guayaquil, Ecuador. Dos meses después de que inicialmente contacto con International Children’s Heart Foundation, Paula y su familia emprendieron la caminata horas 7 (en autobús) a Guayaquil, Ecuador, donde los cirujanos sería capaz de solucionar el corazón de su bebé. Por fin, la niña recibió su vida para salvar la cirugía cardiaca, cortesía de ICHF y los voluntarios que lo hacen posible. Los cirujanos repararon el niño defecto del tabique auricular y múltiples defectos septales ventriculares (agujeros en el septo de las cámaras del corazón interiores). Dos días en la UCI, un poco más arriba de la planta de recuperación y Paula estaba bien en su manera de nuevo comienzo saludable en la vida.
La madre de Paula estaba llorando al final de la entrevista. Más tarde dijo que ella no era capaz de comunicarse con palabras la magnitud del impacto International Children’s Heart Foundation en la vida de su familia. Ella dice que ella se siente siempre en deuda con la organización, y los profesionales médicos que han sido capaces de salvar la vida de su bebé. Gracias a los donantes y simpatizantes, aunque ella nunca será capaz de darles las gracias en persona.
ICHF Babyheart medical missions, new Executive Dir. Terry Carter, and Dr. Christian Gilbert were featured in a recent article in the Memphis Daily News. Click below to read.
By ICHF guest blogger and medical volunteer, Sigurdur Stephensen
We are standing by the side of the road in the desert and staring into the distance. The sand is grayer than I had expected, somewhat grayish yellow and it stretches as far as the eye can see. No camels, no donkeys, no Beduin tents. Only this straight road like a pencil mark on a grey piece of paper. Outside it is 20 degrees Celcius and I wonder what I was thinking when I decided to travel here wearing a fleece jacket.
We are waiting for the police escort that was supposed to follow us from the airport in Basra to our destination in Nasiriyah. In Basra we had only been greeted by two bearded guys dressed in suits. I travelled together with Don, a perfusionist from Chicago, who is here for the second time. He recognized one of the men – Ahmed – from his previous trip. Ahmed walked straight up to Don, kissed him on both cheeks and said: “I love you.“ Don looked rather surprised by this warm welcome. I on the other hand received no kisses and no confessions of love. Then we headed in to the desert in an old van. After half an hours driving the police called and wondered where the hell we were.
We bend down and look at the small stones by our feet. Their surface is smooth as if it’s been polished, which is excactly what it has been. Sand polished for centuries. I throw a green stone into the sand. Now is the religious festival of Shia muslims in Iraq, when pilgrims march to the city of Karballah to remember the death of Hussein ibn Ali, who was a cousin of the prophet Mohammed. Because of recent bombings directed against the pilgrims, many of them walk all dressed in white, like a burial shroud, so they will be ready in case they die on their journey. I mention the bombings to Don. He had heard on his last mission that often the terrorists aren’t necessarily looking for a specific target. They just go out driving on the roads and wait until they find a target worth blowing up. “Like a couple of a whities” I think to myself. “Two representatives of the coalition of the willing, who stand sweating by the side of the road.” Despite the fleece jacket and the heat outside this new information gives me shivers down my spine. I just want to crawl back into the van. Maybe hide under the backseat.
International Children’s Heart Foundation and moral speculations
We have come to Iraq as part of a team from the International Children’s Heart Foundation (ICHF) (www.babyheart.org). This organization was founded by Dr. William Novick, a pediatric heart surgeon from Memphis, TN. The aim is to treat children with congenital heart defects in the developing countries and train the local staff so they can, in due time, acquire the knowledge and experience necessary to treat the children without external help. In the year 2011 thirty two missions were organized by ICHF to twelve countries where 450 heart operations were performed. In 2012 the number of operations doubled. I discovered the organizations, like ICHF online and went for my first medical mission to Honduras in October, 2010. Honduras is a poor country in central America that was hit by hurricane Mitch in 1998. Five thousand people lost their lives, 33000 houses and 70% of the roads were destroyed. In the beginning I couldn’t decide wether to join these highly specialized help organizations, or some other that focus on more common health problems. Diseases like congenital heart defects are highly specialized and the treatment is expensive. A heart operation done by ICHF costs on average $2500, which is much more than the treatment of other more common and serious diseases – such as pneumonia, diarrhea and malaria – although, in comparison to the Western world, these operations are relatively cheap.
Back to Iraq
We drive from the guarded guest house, a kind of “safe house”, to the hospital with police escort. Blue lights, sirens and loaded machine guns. I think the escort draws unneccessary attention and people stop in the streets to watch. I would have preferred walking to work. Or riding a donkey. Dressed in burqa. But I get used to the false sense of security and now it’s time to go to work. But it all starts pretty miserably. In the first operation an eleven year old boy dies. He came from the Kurdish region and was basically asymptomatic when he arrived for an operation for a ventricular septal defect and aortic stenosis. The following day a two and a half year old girl is operated for an atrioventricular septal defect. The operation goes well but during the night she develops pulmonary hypertension that does not respond to intensive treatment. Heart operations in the developing countries often pose increased risk in many senses. The children often have lived with their heart defect for a long time which has created additional problems such as pulmonary hypertension (PHT) and since they are often malnourished they are more vulnerable in the perioperative period. Secondly the knowledge and experience of the local staff is limited which increases the risk for mistakes. The general treatment customary in most pediatric intensive care units in the Western world can often not be provided. Medicines such as nitric oxide, used for PHT, and extra corporal membrane oxygenation is generally not available.
After the difficulties of the first days things start getting better. We suffer no major incidents even though two children have to be reoperated. My job is to examine the children pre- and postoperatively, do echocardiography and take part in deciding which child will need an operation this time and which one can wait. It is evident that we are only going to be able to treat a fraction of the long waiting list. We operate on 15-20 children in two weeks, but each year 30,000 children are born in Iraq with a heart defect that will need an operation.
Teaching and training of the local staff is a big part of our job. The doctors usually speak good english but the nurses and other staff usually do not. The nursing staff are almost exclusively men and often they have not chosen their profession themselves. Therefore not everyone is in the profession because of interest or vision which can be reflected in how receptive they are to our teaching. I try to share my knowledge but I also learn a great deal myself. In Western countries congenital heart defects are usually detected in the first months of life and the patients that require surgery are operated within a few months of birth, or before they develop a lot of symptoms. Therefore, we seldom see the longtime effects of an untreated heart defect. For instance, when I was in Honduras I saw a 7 month old child with transposition of the great arteries, which generally is repaired within a few days of birth in the West.
Iraq was never hit by a natural catastrophe like Honduras. Perhaps more like a man-made catastrophy. But the prize was much higher. The tornado Saddam Hussein created didn’t just blow over the country in a few days – he had 24 years to go about obliterating his own people. The only pediatric cardiologist in Nasiriyah – and one of only ten pediatric cardiologist in the whole country of 30 million people – put it rather mildly the other day. He said: “The main problem of this country is that it has never had a decent leader!“ As long as I can remember Iraq has been at war. I remember recurrent news of casualties in the Iran-Iraq war, that led to nothing in a nine years period (1980-1988), than one million fallen soldiers. Next on the program was the invasion of Kuwait in 1990 and ongoing use of chemical weapons against the Kurds in northern Iraq. And then came the invasion of the West in Iraq in 2003 with the unprecedented participation of Iceland as one of the parties in the so called “coalition of the willing”. The last soldiers from that miserable mission left the country about a month before our arrival. I had expected to meet people suffering from post traumatic stress disorder after decades of fighting and fear of suicide bombing, that have escalated after the evacuation of the American soldiers. On the contrary I met positive, smiling and brave people who didn’t look as if they had endured fear, suppression and war for decades. After repeatedly asking a local pediatrician about the effect of the fighting and the insecurity on daily life, he admitted that war had probably become a part of daily life for the Iraqi people. A help organisation member from America, Preemptive Love Coalition, who originally brought ICHF to Iraq, stated that the first months after the invasion in 2003, foreigners were greeted as friends and invited into peoples’ homes, even if they were total strangers. But as the occupation dragged on and there were no major improvements the hospitality of the locals declined. Now they are more careful and avoid associating with foreigners.
But Saddam Hussein can’t proclaim all the honour of Iraq’s miserable health system. In that matter the United Nations (UN) have a heavy cross to bear. Before the year 1990, 93% of the Iraqi people had access to a health system that was among the best in the Middle-East. After the invasion of Kuwait the UN put sanctions on Iraq and as a result the economic status, as well as the health system, plummeted. Saddam Hussein restricted expenses to health system by 90%. Hospitals and outpatient clinics were closed, there was a shortage of medicine and medical equipment and health personnel fled abroad. The incidence of congenital defects escalated as did malignancy amongst children and adults. This is believed to be the effect of the use of chemical weapons against the Kurds in Northern Iraq, where the incidence of congenital heart defects has multiplied. But the sanctions of the UN also directly affected the people’s health status. Child mortality, under five years of age, doubled from the year 1989 to 1999. Many died of hunger. Maternal malnutrition and failing maternal care also increased the incidence of congenital defects. When the willing nations invaded the country in 2003, the weapons were used against the main pillars of society such as roads, power stations, water supplies, sewers and health institutions. So-called depleted uranium was used in the warheads. This is a radioactive metal with a prolonged halftime. The dust from the explosion, which is thought to be carcinogenic, becomes dispersed in the atmosphere and settles in the soil. Thus the incidence of many malignant diseases has increased at the same time that the means for diagnoses and treatment has diminished. Actions, such as the sanctions used by the UN, reflect the deficiency of the organizations, their naive view of the world and the indifference for the real consequences caused by these actions.
End of the road
In our trip to Iraq seventeen children underwent heart operations on defects such as ventricular septal defect, transposition of the great arteries, tetralogy of Fallot, atrioventricular septal defect, aortic stenosis, double outlet right ventricle, subvalvular aortic stenosis, single ventricle and persistent arterial duct. Two children needed reoperation and two children died. A few children that had waited in the hospital for two weeks for surgery could not be operated this time. Hopefully they will be first on the list when the next mission arrives in three months.
Three days before our departure reporters from several TV stations arrived at the hospital. They were informed about the purpose of the mission and interviewed some of the staff. To keep a low profile this was not supposed to take place until the last day. When one of the chief physicians was asked why they had changed the schedule, and if this wouldn’t jeopardize our safety, he replied: “Don’t worry. You are low value targets.”
Early one morning in late January we are two low value targets – one from Iceland and the other from Belarus – sitting in the back of an old van driving along the same pencil mark as before. We are on our way to the airport. It’s still pitch dark and we are freezing in the back. This time I am glad that I brought the fleece jacket with me. The driver is drowsy and it looks to me that he is about to fall asleep at the wheel under a full moon. I keep an eye on him in the rear view mirror. We lag behind the police escort and when we finally catch up with them the drivers get into a heated argument. That’s all good because our man is suddenly wide awake. Gradually the day awakens and the desert sand gets a reddish hue in the morning sun. The Iraqi nation is at a crossroads. In some aspects it is like a man waiting by the side of the road in the desert. The invaders are gone, at least for the time being and the people have their own government and president. However, down under is disagreement and hatred between groups of Shia muslims, Sunni muslims and the Kurds, that has been boiling for centuries. I certainly hope that the people will make the right decisions and choose to have peaceful communications with their fellow countrymen and neighbours. And also that the nations that represented the coalition of the willing, now live up to their expectations and prove that the reason for the invasion in 2003 was really concern for the Iraqi people and not something completely different. That can be done by supporting help organizations like the International Children‘s Heart Foundation in this war-torn country.
Almotasim’s cousin told us that the patient was an active boy. Colette, the Canadian ICU nurse, assured him that the 12 year old was about to be a lot more active.
At about eight thirty the previous evening, Almotasim had come up to the ICU from surgery with the usual array of kit and tubing snaking out of his chest and throat and was extubated in short order by the night shift. This was followed by a thankfully uneventful night.
A crucial part of the training the ICHF provides its hosts goes beyond immediate issues like, Exactly how does one repair an ASD? And Just what does extubate mean and how or why is it done? Other, less obvious details – like how to manage patient lists to keep the required number of beds in the ICU open – are also important, even crucial. To perform four complex surgeries that will likely require long post-op stays in the ICU, will create a bottleneck with the limited beds available for the next day’s patients. These are the sorts of management details that can often make the difference in a successful program.
Nine days into the Benghazi mission, after a few surprises and a one-day break from surgery, the ICU was very full. So it was with great relief, both to the ICHF staff and, presumably to Almotasim, that he was ready to leave for the pediatric ward after 20 hours. Which is the goal for ICHF pioneered Fast-Track Recovery program. It is a hard and fast rule of Fast Track that no patient who could walk into the hospital leaves the ICU under anything but his own steam. If a child needs to be carried out, he isn’t ready.
The boy was still dazed from his ordeal, granted, but he got out of bed and wasn’t particularly interested in getting back in. He and Colette took a walk down the long hallway and back, at which point he picked up that he was being transferred out of the ICU. Which in and of itself was welcome news, but he grew concerned about the modest amount of swag he’d accumulated. Could he take it with him?
The ICHF nurses traditionally pack small treats for the children: coloring books, blow-ticklers, small toys for their charges. Lindy, a South African born perfusionist working in Holland, brought a bag of stuffed animals with her. Almotasim had grown attached to his lion, and who can blame him? Once he’d cleared up the matter of taking his animal up to the ward, and facing the prospect of getting back into bed, the boy opted for another walk. Then he said goodbye to the other 12 year old in the ICU, with whom he’d made friends.
He went up about mid afternoon, where his cousin walked with us up to the pediatric ward – decorated with Disney characters and other American cartoons – where his parents and little brother were waiting. Almotasim was pleased to be getting out of the ICU, and a little less pleased to be getting plopped into another bed – but if it had to happen, at least he was going to have a decent roommate. He asked about getting his friend sent up to the neighboring bed. Colette said she talk to someone about it.
So what does the future hold for our friend Almotasim? He’s an active kid with a strong heart; he’s loyal to his friends – even the stuffed ones – and has the good sense stay in bed even when he doesn’t feel like it. He seems to ask for what he wants in life, and is a hair stubborn about it. Well, apart from aggravating his parents for the next few years, he’s going to be just fine.