…an essay from pediatric heart surgeon, Dr. Kathleen Fenton, International Children’s Heart Foundation for Women in Thoracic Surgery.
I live in Managua, Nicaragua, and I have been working for the International Children’s Heart Foundation for almost seven years. Roughly 90% of the world’s children are born in countries where there is limited or no access to congenital heart surgery, and 1% of all infants are born with a heart defect that requires surgery for survival. That adds up to a lot of children. Each child has a story, and if you get me started, I will easily tell you one after another, stories of little “blue” children with clubbing the likes of which I had never seen in the US, who had to stop going to school because they didn’t have the energy to walk there anymore; stories of children so thin they looked like concentration camp inmates, with hearts that filled up their chest x-rays though in some cases they “only” had an ASD or a PDA, and stories of desperate parents who had given up hope to the point where they decided to just focus on the other kids in the family, because this one was already lost.
Working in a developing country had been in my mind ever since I was a research fellow in Boston, listening to Aldo Castaneda talk about Guatemala. Several years later, I made a trip with Kirk Kanter to El Salvador and there, for the first time, experienced the need first hand. The 2006 STS meeting, though, wins the award for being the meeting that resulted in the greatest “change in my practice”- I attended several talks on cardiac surgery in developing countries and was really struck by the data presented. Immediately I wanted to do something about it! That year, I made two trips to Nicaragua with ICHF, and definitively relocated in December to start ICHF’s first “in country” project. Since then, I have worked as a member of an otherwise fully Nicaraguan team – operating with a Nicaraguan surgeon who had only completed his training one year before I arrived and who was eager to start a congenital heart surgery program. We have learned an immense amount from each other. There have been lots of stops and starts and setbacks, but we now have the program up and running and are able to do basic and mid-level congenital heart surgery on a continuous basis.
By summer 2011 we were happy with the progress in Nicaragua, so I began to make trips with ICHF medical teams to other countries. This allows me to operate regularly and at the same time have the Nicaraguan surgeon do all the surgery in Nicaragua. In the past two years, I have made three trips with medical teams to the Dominican Republic, four to Honduras, four to Ecuador and five to Benghazi, Libya. I particularly enjoyed making the first-ever trips to Santo Domingo and Benghazi: it’s exciting to do heart surgery where it has never been done before! It’s also very gratifying to make repeated trips to the same country. We work with the same local team each time, and often also have many “repeat” ICHF team members. This enables us to really recognize both the progress that the local staff makes as well as the areas that still need work. It also makes it possible, in many cases, to see children who had surgery on previous trips.
My work with ICHF is also gratifying on a personal level. I believe that traveling in general is a tremendously broadening educational experience: just to see other places (both within and outside one’s home country) is to learn and grow. However, being able to work in another country, side by side with professionals from widely varied backgrounds, goes well beyond the already-valuable experience of being a tourist. In Nicaragua, I have truly learned another language and a whole new culture. Traveling to other Latin American countries, I learn not only new Spanish words, but also different local customs (and of course special foods). Being in Benghazi just a year after the revolution, and helping Libya to recover has, of course, been a unique and unrepeatable experience, one perhaps worth a whole different website post at another time…
Looking at the vast number of children worldwide, a surgeon might be tempted to think that there is nothing that can be done, there is no way to solve this problem. I think often, though, of the response of Mother Theresa of Calcutta when someone asked her how she could possibly hope to help so many people. She said, “Well, I can help this one.”
For more information about ICHF’s global mission click here.
For more information about Women in Thoracic Surgery, click here.
Stefanya was an orphan that our Babyheart medical team operated on during our mission to Kharkiv, Ukraine in February, 2013. Stefanya has Down Syndrome and a severe congenital heart defect known as Tetralogy of Fallot. In order to prevent her from suffering from heart failure, the Babyheart team performed a surgical repair to her congenital heart defect on February 6th.
Just months after the International Children’s Heart Foundation healed her heart, Stefanya was adopted by American, Brittany Newton. Today, Stefanya is with her new family! Stefanya’s caring mother recently took her for a check-up to make sure that Stefanya’s heart was recovering well. Here is a message from her new mom, Brittany, after their successful check up.
“Stefanya checked out great at the cardiologist today! They said the repair looks excellent and she is doing great! Oxygen level was fabulous and she doesn’t need another checkup for six months and after that, just a yearly check up on her heart! They said ICHF did an excellent job thanks again for all you guys do!”
Brittany said she found Stefanya through Reece’s Rainbow, a ministry that helps provide a way for families to find children with special needs who are available for, and desperately need, adopting.
“It was neat to get to tell them about ICHF,” Brittany continued, “and the life-saving work you guys do. Without the surgery she received she likely wouldn’t have made it until we got there to adopt her and bring her home. We are so deeply appreciative of what you have done for her. Surgery + adoption has truly given her a second chance at life.”
It is a fantastic thing to see the whole circle completed: An American team of doctors and nurses goes to Eastern Europe to operate on a child with down syndrome and a broken heart, now fixed and adopted by a loving family back in America!
The following is an editorial written by Dr. William Novick, published in Memphis’ Commercial Appeal May 31, 2013
Since I founded the International Children’s Heart Foundation in Memphis in 1993, our teams and I have performed cardiac surgery on more than 6,000 children in 31 countries on every continent except Australia and Antarctica. In 2013, we have set our sights high, with plans to do 1,000 surgeries on 40 trips to 15 countries.
Every year, 1.8 million children are born with congenital heart defects. The International Children’s Heart Foundation strives to address this problem by getting care to as many children as possible, sending supplies and surgical teams around the world and training local surgeons and medical staff so they can care for their own people.
But you don’t have to be a cardiac surgeon to save children’s lives. The Save the Children organization estimated this month in its report “State of the World’s Mothers” that 1 million babies die on the f irst day of life. Most of these deaths are a result of far less complicated health issues than heart defects, and with much cheaper solutions.
For children around the world, the first day is the most dangerous day of life. Babies in our own communities in the United States are not immune from these dangers. Every year, 11,300 American mothers lose their babies the day they give birth. Although the risks are not as high as in many developing countries, the U. S. has the worst first-day death rate among industrialized nations, at 2.6 deaths per 1,000 live births. Tennessee’s first-day death rate, 2.8 deaths per 1,000 live births, is close to the national average, while Shelby County has struggled with numbers almost twice as high — 5.5 deaths per 1,000 live births.
Shelby County’s efforts to address infant mortality are starting to pay off, and these efforts must continue if more babies are to survive their very first day. As in many other parts of the world, these deaths are often related to poverty and lack of adequate prenatal care that result in preterm birth. However, here at home, they are almost never the result of lack of very basic care at birth itself. Whatever the reasons, avoidable newborn deaths are always unacceptable.
Through the efforts of many good people, global child deaths have declined from 12 million to 7 million annually since 1990. Until now, most of that progress has benefited children older than one month. Newborns continue to be the most vulnerable. But the world’s babies don’t have to die.
The average cost of the heart surgery performed by the International Children’s Heart Foundation is $2,500, which is 91 percent less expensive than the average cost of a similar surgery in the United States ($ 30,000). But growing evidence shows the cost of preventing the deaths of babies on their first day of life is usually even cheaper. A basic antiseptic costing 25 cents can prevent deadly infections, and injectable antibiotics for $1 can treat them when they do occur. Steroid injections for women in preterm labor or basic resuscitation devices costing a few dollars can help babies breathe at birth.
I’m proud that our country is helping developing countries train health workers to deliver this kind of basic lifesaving care, which empowers local people to save the lives of mothers, babies and children for many years to come. Support for international development is less than 1 percent of the federal budget. I hope you’ll join me in supporting America’s continued leadership in maternal, child and newborn health. It could be the difference between life and death for a child. Dr. William M. Novick is the founder and medical director of the International Children’s Heart Foundation and a professor of surgery and international child health at the University of Tennessee Health Science Center. In April, he was one of nine Americans honored with a REAL Award, created by Save the Children and the Frontline Health Workers Coalition to develop greater respect and appreciation for health workers around the world.
With a subscription you can read the article on the Commercial Appeal’s website here.
A photographer’s first voyage on ICHF’s first Babyheart medical mission to Skopje, Macedonia
Humanitarian missions are a labor of love, with equal parts of each. They’re also full of hows… How are things going to go, how will the kids do, how is the culture different to what I’m used to? There’s an excitement to not knowing any of these things and a similar excitement as the answer to each question is found through experience.
There are always two aspects to any mission. The external aspects that generate the questions above and the internal aspect of team and patient where there are no questions at all. I KNOW the team is here to fight for the patient, I KNOW the skills of each individual is beyond question, I KNOW the mother and family of each child we see loves their kid with the utmost intensity. I KNOW what’s at stake.
Macedonia, from my perspective, was a beautiful experience. After a grueling flight from Denver I was rewarded by a pretty morning and short drive from the airport to the hotel where the team was staying. No matter where I go, the drive from the airport to the city always sets my impression of a place and this drive was no exception. We passed small parcels of land that had obviously been farmed for a long time, new housing developments and older homes long abandoned. I saw old men fishing in what looked like drainage canals and groups of kids playing basketball at a graffiti covered rec area. I saw in abundance what I call “the sameness” of everywhere I’ve ever been, people going about their day, working hard to support their families. The thing that was different here, was the destruction. There are places you had to look for it but there are small reminders in Skopje of the devastating earthquake in 1963 that set this country back so far. The best example is the train station in Downtown Skopje that was left as it stood the day of the quake, stopped clock and all.
My job as photographer is twofold, to document what the team is doing to show both the world and you as a donor the good works you make possible and to give the kids and their families a voice. It’s a visual voice but that’s enough to start a dialog between them and the viewer. I feel this is the most important aspect of my job, to make that connection between two people who will probably never meet, between two people, one in desperate need for help and one who CAN help. Here in Macedonia there were no shortage of children in need of lifesaving help and fortunately a team here who could provide that help, the Babyheart medical mission team.
On my first day I was introduced to a woman and her son who’s story was tragic. I wish I could post photos of her son but at her request I won’t. She had had 6 miscarriages and her little boy with the sick heart is her last chance at having a child in her life. Even though her son was scared at being poked and prodded and apprehensive about the army of strangers around him, you could tell he was all boy inside. You could also tell the bond he had with his mother was deep and unshakable. Although I can’t go into too much detail about his case, I can tell you his story had a happy ending…
There were 11 cases done on this mission. I’m unique as far as the team goes because I can’t compartmentalize. Each medical team member has a specific role to play, surgeon, scrub, cardiologist, SICU… I am a participant in my own way for the entire case. I’m there in the beginning for the screening, I’m in the OR for the procedure, I wait with the family for their child to come up from surgery, I’m there in the SICU post op when a family member gets to come in and see their baby for the first time and hopefully I get to come back at some point and see a happy healthy kid playing at his home. This breadth of experience gives me a unique position to be able to comment on the miracles that the ICHF team does with your support. Every volunteer and donor should be proud of the lives they touch because saving innocent children is the highest calling a person can answer.
The stories of each of the families on this mission was different and compelling. As the photographer, I have the privilege (sometimes curse) of really getting to know the families. I share their joy when cases go well and their grief when there’s nothing that can be done. I hope through my pictures from this trip, you’re able to share some of that too.
Babyheart photographer and guest blogger
Novick’s work abroad recognized
WASHINGTON — Memphis pediatric heart surgeon Dr. William M. Novick was honored Thursday on Capitol Hill by Save the Children and the Frontline Health Workers Coalition with The Real Award for his international work with children.
“What it means to me is that the largest children’s charity in the world has realized and has recognized the work that the foundation is doing worldwide for kids with heart disease,” Novick said prior to the Hart Building ceremony, referring to the International Children’s Heart Foundation.
Novick, 59, who holds an endowed chair at the University of Tennessee Health Science Center in Memphis, said the award may be for him but it is meant for his entire team.
“I guess they have to identify an individual, but the work we do around the world is accomplished by the literally hundreds of medical volunteers that work with us every year,” he said. He said that was 450 medical clinicians last year.
“Although this may be an award given to ‘ Dr. Novick,’ it really represents an award, I think, to the institution — (ICHF) — an award that should be shared, obviously, by all the people that make this happen all over the world.”
The Washington award ceremony was just a fast stopover in a globe-trotting regimen that saw him in Macedonia on Sunday.
Friday, he left for Russia, then Iraq. On Thursday, he visited the offices of Sen. Bob Corker, RTenn., and U.S. Rep. Steve Cohen, D-Tenn., who have been supportive of his work.
The foundation was created after a wealthy Philadelphia woman underwrote the work with contributions to the Paul Nemir Jr. Chair at UTHSC after reading Novick’s account of taking his skills to the Balkans in Healing the Heart of Croatia.
The REAL award, and its $ 20,000 prize, was underwritten by the Bill and Melinda Gates Foundation, the Masimo Foundation and foundations associated with biomedical companies Merck and Medtronic.
Novick and his team have performed heart surgeries on more that 6,000 children in 30 countries, including Macedonia, where he met with officials last year after learning from a UTHSC dentist that children there had to travel to Bulgaria for heart surgeries.
ICHF has six administrators and four clinicians based in Memphis and 11 clinicians elsewhere around the country.
Novick was nominated for the Real Award by Kristen Brite McCormick, a volunteer at a nongovernmental organization in Iraq who lost a daughter to congenital heart disease, according to foundation spokesman Bryan Artiles.
Thursday’s award was the first by the Save the Children partnership aimed at recognizing the work of frontline health care workers.
It is is intended in part to call attention to the critical shortage of trained medical personnel in some parts of the world.
The award coincides with this week’s World Health Worker Week.
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!
ICHF sends teams of medical volunteers around the globe to perform free heart surgery on children with congenital heart defects in underdeveloped countries. In February, we had a Babyheart Mission to Santiago, Dominican Republic. One of our non-medical volunteers, Janie Odgers, accounts for the experience with the team, the local staff and the many lives that ICHF touches everyday.
I didn’t know what to expect as a non-medical volunteer traveling with a medical team to the Dominican Republic. The Babyheart Team was going to the Dominican Republic to perform cardiac surgery on children.
Our first day, we boarded the bus and headed to the hospital. We drove down “used auto parts row”, I had never seen so many bits and pieces for cars – fenders, springs, tires – in little shops lining the street. As we arrived at the plain looking hospital, across the street were little stalls selling hot food. Entering the hospital a very jolly guard greeted us and we headed down the hall and up the stairs. I wasn’t prepared for what I would see at the top of the staircase.
At the top of the stairs was a waiting area full of moms with children, quiet, and patiently waiting. But it was the eyes that I saw, the eyes who were pleading, begging, hoping that we were the team with the answers. I didn’t know if all of these families were here to see this team, I assumed they were, but I later found out it was the waiting room for many surgeries.
As we moved through the double doors into the unit, it was abuzz with interns, doctors, and nurses all getting ready for another day. We shuffled off to a small room with lockers, also housing three beds for children waiting for their respective non-cardiac surgeries (as the day wore on this room was also the post-op). In the corner behind the door the echo machine was rolled in and set up next to one of the beds.
We hustled off to the little changing room where we donned our scrubs, booties and disposable nurse caps (we looked like the lunch ladies from school days) and went back out to join Tom at the echo cardio machine. The first mom and child were waiting, and again it was the eyes I saw. The mom trying to be brave and the child worried at what Tom was going to do to them.
It was fascinating as we watched Tom and then Sri navigate the little children’s bodies to look at the problem areas as they explained to the local staff what they were seeing. Surgeries started the very first day, with the most difficult cases the first week. Children moved from surgery to ICU, to the step-down ward and then the ward.
The eyes started looking familiar as we traveled through the waiting room and down the halls, moms and dads started to come in and see their precious children who had gone through surgery and were in the ICU. But their eyes still looked deep into our eyes as we walked around, searching our eyes for answers.
By the end of the first week I was overwhelmed by the compassion this team had for the children, the children who might not have lived without the expertise of this team. They were performing two surgeries a day; maybe three and some children went to the cath lab at the other hospital. Lives were being saved everyday.
Once the children moved to the ICU, the nurses worked around the clock taking care of them. They also had a small army of nurses who were either in training or were nurses who worked at the hospital that came through the ICU daily. Sharing, teaching, advocating for the children – holding them, walking them, feeding them along with their nursing duties – everyone cared and were happy to be there.
I was a little surprised to find out the parents had to bring the food and juice in for the children, maybe diapers and blankets, I wasn’t sure. We had candy we handed out to the parents, they were always grateful. We found the local nurses were just as happy to have a little sweet too.
The children were amazing, getting up and getting dressed the day after surgery, or the second day, quickly moving from ICU to step-down ward, to the ward and home. And the results were phenomenal, on the end of the second week we saw a small group of moms with big smiling eyes and happy children who had had surgery the week before but had now gone home. It was truly miraculous.
At the end of two weeks, twenty surgeries had been performed and twenty children’s lives had been transformed. I had the opportunity to see an open chest with a beating heart, the heart of a child who was going to go on and probably live a wonderful life.
I count myself one of the luckiest people alive as I had the opportunity to witness this first hand and my life will never be the same. Everyday someone asks me how the trip was and I share the stories of the children and the amazing team who spent two weeks away from their families to save children who might otherwise have died if it wasn’t for the International Children’s Heart Foundation. And I say, “no matter what the differences are – race, religion, or color – all parents want the same thing, for their children to live” and who wouldn’t want this for everyone’s child.
Janie Odgers, Guest Blogger
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.
Click the link below to read about ICHF’s struggle to raise funds and maintain its global fight against congenital heart defects.