Last week Ukraine celebrated Independence Day. The Kyiv Post was full of stories about celebrations, self-determination, and a few pesky language issues like: Is a Ukrainian speaking Ukrainian oppressive to a Ukrainian speaking Russian? There was a long article on the modern “Independence Generation” – those born since 1991 when the country voted itself out of the collapsing USSR. It is a generation redefining itself, as one youth put it, “without the Soviet aftertaste.” But to an American of a certain age that sounds like a lot to wash out of your mouth.
Some 40% surveyed said that they couldn’t go a day without cell phones, Facebook or Twitter. The Ukrainian youth is tech savvy and outward looking in a way that their parents and grandparents never were. Considering these last two decades have been the longest stretch of freedom the Ukrainians have enjoyed in a thousand years, their ancient ancestors weren’t very outward looking either.
But futures, bright or dark, belong to the next generation. None of the children treated by the Baby Heart Mission to Ukraine lived under the Soviets, and few of their parents have much working memory of that era. But societies don’t turn on a dime, and the old aftertaste – assumptions, protocols, and systems – lingers.
The first ten years of independence saw the old centrally planned economy collapse and it wasn’t until 2001 that the economy began to grow at last. Modern buildings and luxury apartments are going up around town offsetting the sinister drabness of the Soviet aesthetic. Ukraine is redefining itself as a modern European country, and to do that it needs a healthcare system that can take care of its own.
To put it in words the youth of both America and Ukraine can understand, you can’t download the apps of the 21st century without upgrading the operating system. For four years now, Baby Heart Missions have been working with the Kharkov Regional Hospital – training staff, writing crucial protocols, and implementing operations that work within the existing system. While there are pediatric hospitals in the city, it is the regional center that has the technical capacity for cardiac surgery. What the Baby Heart mission does here, that few other institutions or foundations do, is provide the crucial leap from adult to pediatric cardiac surgery. A child’s heart is not just a small adult one: it is growing and developing, and when it is repaired, it must be done in a way that will allow for future growth.
So goes the heart, so go the people. For a medical system that has traditionally waited until adulthood to treat congenital heart defects that should be corrected in the first few years of life, this change couldn’t come soon enough.
People must have hope for their children if they are to have hope for the future. And the most perennial form of hope is to make healthy children out of sick ones. They need doctors with applied training and nurses who are taught to think and act critically for the sake of those kids. If they are to have hope for their new nation, Ukraine must be open and exchange life-improving technology with the rest of the world.
Think of it as a mouthwash to get rid of that pesky Soviet aftertaste that the youngsters won’t admit to having.
The ICHF team is here in Iraq, in the 2nd month of the one year program to help them establish a high quality program to provide cardiac surgical services to the children of eastern Iraq in the city of Nasiriya. Many children have received surgery and are on their way to a full life free of obstacles to a happy and healthy childhood. While much progress has been made there is much more work to be done.
by Dr. Kathleen Fenton
I had been traveling a lot and was looking forward to spending almost a full month at home, when one Friday afternoon I received an email that briefly informed me: “Dr. Novick needs you to go to Libya, OK?” The trip was in two weeks, and my first thought was wait, Libya? There was just a war in Libya! But, maybe because of all the kids and all the worried moms standing behind any request of Bill Novick, it’s almost impossible to say no, rather like when your computer pops up a window that says it has encountered a fatal error and needs to shut down, OK? So right away, I knew I was going to Libya.
As you might expect this soon after the revolution, there are not many options to fly into Benghazi. Most of the team arrived on the same flight from Istanbul on Sunday morning: one by one we realized that others seated nearby were also ICHF team members, among whom were two Libyan-American women, a cardiologist and an ICU nurse, whose help turned out to be invaluable. Also on the plane were quite a number of young men, many on crutches and some missing limbs. I later learned that they were soldiers wounded in the war, who were returning home after undergoing medical treatment in Turkey. Libya in March was still an open wound – many areas of Benghazi were still filled with rubble and burned out cars from the revolution, and throughout the city there were billboards honoring the dead, all so young! Our second day there was March 19, the one year anniversary of the implementation of the no-fly zone that Benghazi residents credit with saving their city from complete destruction; everywhere we went for two weeks, people thanked us, as if each one of us had been personally responsible for saving them.
The March trip marked the first-ever ICHF mission to Libya and the first-ever open heart surgery at Benghazi medical center. Each day, the operating room was filled with eager observers in addition to the nurses and doctors specifically assigned to work with our team. The two weeks flew by and before we knew it we were headed back home. My first trip to Libya was an unforgettable experience; I had made new friends for life, and was eager to go back.
The second mission trip to Libya began scarcely a week after the historic first elections in the lifetimes of most Libyans. Those of us who had been to Libya before noticed the difference immediately as we pulled out of the airport: most of the billboards commemorating the revolution were gone, replaced by campaign advertisements. There were more than 100 political parties! The Libyans were energized, excited – many proudly still wore the ink on their right index fingers indicating that they had voted. People who had left during the war, both foreigners and Libyans, were coming back, they told me, and things were on the mend. At the hospital, we were greeted as old friends, and immediately went to work on the day we arrived, evaluating patients and getting things ready for surgery. We operated on 27 children in less than two weeks, and I added a few new words to my scant Arabic vocabulary. We also started evaluating kids for the next trip. Libya is committed to rebuilding, and Benghazi Medical Center is committed to becoming the first center for pediatric cardiac surgery in the eastern half of the country. ICHF will be there every step of the way to help.
Dr. Kathleen Fenton is a pediatric cardiac surgeon who works full time for ICHF. Since 2006 she has lived in Managua, Nicaragua helping to establish a heart surgery program. Over the past year she has made 9 trips with ICHF teams to other countries.
By conservative estimates, the war in Iraq cost the American taxpayer some two billion dollars a week for nearly ten years: first by wrecking the place and then, because it was a modern war, rebuilding it. Exactly what was rebuilt is hard to say, but according to the Congressional Budget Office, we certainly paid to remodel the country. Still, some places in Nasiriyah look like the Marines rolled through sometime in the early spring. There are big dusty piles of rubble where buildings once stood as well as power and water outages several times a day.
Nasiriyah was the site of the famous battle on the drive to Baghdad where army supply clerk Private Jessica Lynch was captured and then famously rescued by Army Rangers. Both Private Lynch and Nasiriyah both reluctantly captured America’s attention, and both faded quickly. Not much has happed here since.
Politics, at the very best, are muddled. They lead to wars and wars lead to more politics which leads to…you get the picture. Wars serve the abstract: economics, self-determination, nationalism, and conquest. Democracy is a sneaky concept; there are plenty of repressive democratic ‘people’s’ republics in business. Freedom is sneakier still. Freedom to do what? Whatever you want? To be a free society you have to accept that the guy down the street with the loud stereo and the crab grass in his yard. Freedom to do the right thing? Who decides what that is? If it isn’t you, are you still free?
These are hard questions, and to look at the bill, expensive ones. They may be worth asking but the fact is that people’s lives are tripped up on much smaller matters – like the death of a child. The International Children’s Heart Foundation, as a non-profit, can’t afford to ask questions at two billion a week, so it doesn’t. Its job is more visceral. For an average $22,000 a week, the ICHF serves a very different, and arguably more affective mission: twelve lives saved. You could argue that those numbers are but a drop of water in the ocean, but you’re chasing the wrong metaphor. It is a bead of brightly colored ink on a piece of paper that spreads among the families and friends of the young that have been given a second chance to be alive. You don’t have to soak the paper to change it completely, just keep applying drops. They spread.
The US Military dubbed the war in Iraq “Operation Iraqi Freedom”; the Iraqis called it an invasion. The same call the extended ICHF program in Nasiriyah “The Remedy Partnership.”
“The goal of our [the ICHF] being here is not to do surgery on children.” Says Dr. Novick, “It is to establish a regional pediatric heart center for southern Iraq at the Nasiriyah Heart Center, to establish a system that works. The goal is to work with local teams to bring the level of competence in simple to medium complexity to acceptable levels by the end of the year.”
If we want to win the minds, let’s save the hearts. Let’s save the hearts across a world where one in a hundred children are born with congenital heart disease. You don’t have to save them all, you only have to save one.
According to Muhammad, a 25 year-old cardiac surgical resident – and part of the newly launched ICHF mission – Nasiriyah is a small town, with only around two million residents. It is not the center of things. Not yet at least.
His dream growing, up in Baghdad (a city of about 6 million), was always to be a doctor. He kept his grades up through primary school to ensure he’d qualify for medical school. It was a goal he held onto throughout the troubles of the last decade. Recalling his time as a medical student in Baghdad, he says, “It bad, horrible, colleagues were killed and kidnapped right before our eyes. What do you do? You must live. You must go to work, go to school, go have fun.”
If he was raised in a center of violence in Iraq, he now works at the center of the solution. As a surgical resident at the Narsiriyah Heart Center, he is part of the “Remedy Partnership”, the ICHF one-year mission at the hospital.
The program, launched this week, is off to a successful start with four successful procedures in two days. This mission is not about just stepping in and saving lives, though. Those blue babies who are given a second chance at childhood are a means to an end. A major component to this mission is the establishment of protocols and systems that will create an efficient and effective program over the course of the next year that will last long into the future.
By establishing as a regional pediatric cardiac center in Nasiriyah to serve southern Iraq, the ICHF helping change the center of things from violence to healing.
The 4:10 flight from Istanbul came in a little early. Even though many of us had been up all night traveling, the ICHF team was excited to get to work. Nabwa Qaragholi, the determined Executive Director of Living Light International, met the team at the Basra Airport. With a lethal combination of kindness and pushiness, Ms. Qaragholi handles the backstage logistics in Iraq to make sure the extended program launching this week will run smoothly.
After loading our kit for the drive, we met our army escorts and rolled out into the desert. There is a certain stark beauty to Iraq that grabs romantic figures like T.E. Lawrence and Captain Sir Richard Burton. The sand has a barely pinkish hue and is very fine, so when it kicks up it stays there. The affect is that, without any real point of reference, you can’t tell where the land and sky meet at the horizon. It blurs like a finger dragged across a line of chalk.
In the light traffic the drive through the desert is featureless but quick. As we approached Nasiriyah, the landscape got greener, sort of. In these brutal summer months the only thing growing is sparse scrub. The dry brush gives way to the tall, thick reeds of the marshes fed by the ancient Euphrates River, and when you cross it you are in the Fertile Crescent where civilization started. In fact, we are only about an hour away from Ur, the biblical city considered the oldest settlement in the world.
Nasiriyah is hard to conceive. There is still rubble that hasn’t been cleaned up from the war, but there is new construction going forward as well. Large walled homes abound, painted gloriously in a riot of color. Older buildings are the color of the khakis my wife won’t let me wear out of the house.
At the Ministry of Health guesthouse, Dr. Novick and the ICHF team are greeted warmly as old friends embrace and have a laugh. This is the first trip of an extended yearlong program, but friendships have been cemented over several shorter ICHF Mission trips over the last two years. The famed Arab hospitality is lavish and an Iraqi friend is a friend for life. It is one of those scenes that makes the troubles of the last decade seem far off – where they should stay.
We were fed an enormous traditional meal of chicken and rice with peppers. Set out on platters around the tables was a blackened fish called silva, a creature about 14 inches long. Eat it with our fingers, and once you learn the trick of taking some without a getting a mouthful of bones, it is excellent. Being Ramadan, our hosts were fasting and didn’t join us.
And while this was a happy occasion, both the ICHF team and our hosts know that it is time to get to work: the year ahead will be trying but triumphant as well, for the volunteers, Iraq and mostly its children.
We were at the brightly painted and ambitiously named El Cielo Para Los Niños de Ecuador – Heaven for the Children of Ecuador – a foundation run by the ambitious Dra. Zorayda Figueroa. The good doctor is our liaison with the Hospital del Niño Dr. Francisco de Ycaza Bustamante, as well as the mission team’s local handler. She evidently possesses some practical magic when it comes to massaging Latin American bureaucracy and paperwork. Some seven hours earlier, I’d somehow been waved through customs at her insistence. She had also conjured up an army bus and flatbed for the International Children’s Heart Foundation. The truck was pulled halfway up on what passes for a sidewalk in front of the cinderblock building, and Sunday traffic roared by as the volunteers loaded the boxes that had been sent forward for the ICHF mission in Guayaquil.
The team flew into Ecuador from all parts of North and Central America. Most met for the first time the day before or, in my case having arrived at the hotel at two in the morning, at breakfast. On ICHF Medical Missions the team gets to know each other on the job. And it is loading an army truck that will take us and our supplies to Bustamante Hospital that it is beginning to dawn on the team the parameters of the medical situation into which we’ve flown.
The per capita income of Ecuador is only $5,820, and at 3.5 million citizens, Guayaquil is its largest city. Unfortunately, it also has the highest unemployment rate in the country at around 13%. Bustamante is the public hospital, serving the poorest citizens, many coming in from the Andes and further still from the Amazonian region. The dominant health problems are typical of poverty: malnutrition, diabetes, and – the leading cause of death – heart disease. The infant mortality rate is 19.6 per 1,000 live births compared to 5.9 in the US, so congenital heart disease is a growing problem in Ecuador.
At the hospital, we spend our Sunday sorting out supplies in an unused operating room. While the facilities are old fashioned by American standards, the place is clean and brightly painted against the humidity that clings to everything in an equatorial port city.
Lynn Harness, a perfusionist from Tupelo, Mississippi, sums it up when he says, “You make do with what you’ve got.” He points to Heaven and adds, “There is a lot of upstairs work.” Which may be the only thing that could possibly inspire a bunch of hard working professionals to use their vacation time to fly across the world to do their day jobs, without pay, under less than ideal conditions including an undermanned language barrier, and still produce the same success rates as in the US, only faster.
The speed is due to what the chief PICU nurse, Frank Malloy, calls “Fast Track Recovery.” A program developed by the ICHF in response to trips where 20 some odd surgeries are performed over the course of two weeks, while only five or six PICU beds are available for recuperation. Breathing tubes are taken out quickly after surgery when possible, reducing the likelihood of infection. In addition, painkillers are limited somewhat to better assess the patient’s immediate needs. While the light use of drugs would frighten most North American parents, it is hard to argue with the results.
When the team arrives at Bustamante on Monday morning it is clear that on Sunday the waiting rooms were not running at full tilt. The halls are now filled with folks waiting to be seen by the hospital’s limited staff. It is loud and crowded and for the ICHF, the real work hasn’t even started yet.
While the first patient is being prepped for surgery, Frank delivers a presentation on Fast Track Recovery to the volunteer nurses. Then they wait. Which returning nurses will tell you is the most aggravating part: the meds and equipment have been sorted out and inventoried, and the beds are ready. Dora, a respiratory therapist and veteran of previous ICHF trips, checks the ventilators. “This is too easy,” she says, “Everything works.” But it will be the last time for about two weeks that they will be idle.
The first patient – eleven-year-old José – comes out of the OR after lunch. Within minutes of arrival in the PICU, the boy is breathing without the help of a ventilator and coming out of his stupor. Despite having just had open-heart surgery and still clouded by anesthesia, José is strong enough to deliver a Beckham-like kick to the head of volunteer Melissa. But he’s a charming kid and after a little water, changes his approach, he delivers a wet smooch to Amanda. In a few more hours, José is asking for wheelchair rides, and within a day, walks (or rather dances) himself out of the PICU with Melissa at his side. She’s very forgiving like that.
Every morning, the team meets for breakfast at the hotel with the conversation centering on yesterday’s traumas and the hopes of the coming day. The next three patents are infants, and while not the ham José turned out to be, are very squirmy. There are hiccups, there always are. Javier does need to be reintubated and the little ones don’t move off the floor as quickly as the older children do.
The worn parents – one at a time – are allowed in the PICU to sit with their babies. It is here that Lauren, a volunteer from Toronto on the first week’s night shift, says that the language barrier seems most insurmountable. “I’m pretty good with comforting the families. That’s an important part of my job. But here it’s harder, you can’t mime warm and fuzzy.”
It is fascinating to watch the surgeons and technicians in the OR work with machine-like precision on outdated equipment and to see the nurses, grinding out twelve-hour shifts on their vacations, caring for these poor children who otherwise would have fallen through the cracks of an overwhelmed system. They are, by necessity, unsentimental about what they do. And perhaps on an individual level, that is the only option. Still, given the circumstances of a team used to the latest whiz-bang technical equipment in the OR and PICU, the overall results of the team on this first week in Ecuador seem little short of miraculous.
Maybe there is something to the ambitious name Dra. Zorayda coined: ICHF is Heaven for these children.
The world’s “blue babies”, born into awful circumstances, are the six million reasons that the International Children’s Heart Foundation exists. To understand how and why the foundation is able to do what it does, facing political and logistical hurdles at every step of the way, is to know the ICHF’s supporters and volunteers.
On mission trips, the volunteers live and eat together for two weeks to create a smooth team dynamic. The first morning in Guayaquil, Ecuador, we sat together at a single, long table and I met a first time volunteer named Kristen Longoria. She was, by volunteer standards, a young’un, although not the twelve years old the customs officer had taken her for. She graduated from high school in Edinberg, Texas and is headed in the fall to Baylor University with plans of being a doctor. Having grown up so close to the Mexican border, Kristen is fluent in Spanish. So whenever I would claim to speak “pequeño español”, she would roll her eyes and say, pointing at me, “No habla español.” It cleared things up.
Still, running off to emerging countries for 12-hour shifts to observe, step and fetch for a very talented and determined medical team between the operating room and a pediatric ICU, is not the sort of summer vacation that appeals to a lot of kids her age. As it turned out the mission with the ICHF was of more than a passing interest to Kristen. It is one stop, and by no means the last, of a journey that started when she was just ten years old.
It was then that it was discovered that her infant little brother, Jaime, was born with aortic stenosis and mitral valve regurgitation. Aortic stenosis is an outflow obstruction of the left ventricle causing pressure to increase inside the left ventricle, which in turn, causes the same to thicken, resulting in decreased blood flow and chest pain. As the pressure begins to rise, blood tends to back up into the lungs. The mitral valve is the two-flapped valve controlling blood flow between left ventricle and the aorta. Mitral valve regurgitation occurs when the flap doesn’t close tight enough causing blood to flow backward into the heart so that oxygenated blood can’t get to the body, making the patient chronically fatigued and out of breath.
Jaime went into go into cardiac arrest some five times before his first birthday. And it was nearing this landmark that, due to poor profusion resulting from pacemaker complications, he lost two thirds of his intestines. Without a new heart, he was given two weeks to live.
It was at the University of Chicago where little Jaime underwent a complete heart transplant in January of 2006. Kristen moved with her family from Texas to be with her brother, and after a few hiccups, he was recovering nicely from the ordeal. The family was able to return to Texas in March.
Family life, under these circumstances is never what you’d call normal. Although “normal” is a very relative term. Kristen’s adolescent years have been spent in schoolwork, playing basketball (a heroic effort in itself, given that she’s a towering 4’11”), and she is a self-proclaimed choir geek. Packed into that schedule was taking care of her baby brother: mixing and administering medicine; feedings because being intubated most of his life, Jaime couldn’t feed himself; equipment maintenance; and a certain hyper-awareness to monitor alarms. None of which blends seamlessly into average teenage life, but, as Kristen said, “It all just became part of my wardrobe.”
The experience more than altered her wardrobe, however. A desire for future in medicine had taken root. It was Jaime’s nurse practitioner, Karen Kasinger, who first told Kristen about the ICHF and it’s mission. On why she volunteered for an ICHF mission, she says, “I wanted the experience. I wanted to see what I’d been through the eyes of the doctors and nurses. This is an experience I needed.”
In 2009, the University of Nebraska took Jaime into their feeding clinic where he learned to feed himself somewhat. Still, the workload for Kristen, her parents and her brother, was a full time job. “He used to pull his G-tube out all the time. We were constantly repairing tubes.”
Then on January 27th, 2011, one day past the five-year anniversary of his heart transplant, and about a month after his Make-A-Wish foundation trip to Disney World, Jaime passed away.
“This is a large part of why I want to be a doctor, but not the only one. Things crystalized for me when I realized that I’d lost my first patient.” Said Kristen, sitting in the break room at the public hospital in Guayaquil – a world away from home.
“This has given me experience on a technical and emotional level. There is no reason, if I combine that experience with education that I can’t pay this forward to thank the nurses and doctors and janitor and the people at Ronald McDonald house. They all did so much to help keep my family together through this.”
This is Larek, a 7-year-old boy who came in for an ASD repair surgery. The next morning he was extubated and able to walk out of the ICU, but not before playing Angry Birds with ICHF team member, Kelsey. This is Larek with his mother Natasha.
ICHF volunteer team member Vanessa Wookey provided this info from Kharkiv. She is an American med student and was grateful for the opportunity to travel with ICHF and be a part of this amazing, life-changing experience for her. If you are interested in becoming a well-travelled ICHF team member please visit our website for more information at: www.babyheart.org.
The World’s Most Travelled Man Visits the World’s Most Travelled Medical Team
Fred Finn, a man who has travelled more miles than anyone on Earth, and holds the Guinness World Record for number of flights on the heralded Concorde at 718, thought it would be fitting to visit the world’s most travelled medical team. In May of this year he paid a visit to the Academy of Medical Sciences of Ukraine to see firsthand the wondrous work of the International Children’s Heart Foundation Babyheart Medical Mission, in the middle of their 16th trip to Kharkiv and 28th overall to Ukraine. While there he spent time with ICHF Associate Medical Director and pediatric cardiac surgeon, Dr. Christian Gilbert, ICHF Global Ambassador, Simon Gale and the rest of the medical team. He was able to see the facility where so many lives have been saved such as baby Elizabetha, after her surgery to repair a Tetralogy of Fallot.