ICHF Archives - International Children's Heart Foundation

April 30, 2013

Babyheart Mission Macedonia

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.

Kevin Whitcomb

Babyheart photographer and guest blogger

www.eyesofman.org

February 8, 2013

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.

December 6, 2012

To Own Your Victories is to Own Your Future

“When I was a girl, the oath we took said – in part – ‘May fire rain down on America’. I didn’t want to say it. I’d lived in America and had friends there. I was nine, so the teachers let it slide. They didn’t believe it either. Had I been in high school I would have been punished.” Madia, an anesthesiologist resident told me. She continued to talk about the revolution, her eyes coming alive, “It was the best time of our lives! There was such solidarity. We all came together.”

Now the US – along with France, Turkey, Qatar, and the UK – are considered friends of the revolution. The flags of the countries can be seen in the graffiti that covers nearly every vertical surface in the city. A careful student of 21^st century American foreign policy might note that this in not always the case with the nations we try the ‘help’.

A hated tyrant was ousted, without invasion or intrusive nation building, and a loose group of put-upon citizens were able to take their country back. Libyans are grateful for the help, as well as, in the end, being allowed to drive their own revolution. And why not? People and societies must own their victories, or they aren’t really victories.

To that end, taking care of your own children is written into the operational model of the ICHF. Certainly the care for the children is a part of the mission, but the true endgame is creating a sustainable model for a pediatric cardiac unit that works: Writing protocols and technical training to international standards as well as working within the cultural framework of the host country. It is crucial distinction that separates the ICHF mission from the medical safaris. They no doubt to good work and save lives, but when they head back to their comfortable lives, no much more gets done. When ICHF volunteers head back to their comfortable lives, they know that they have left not only a mark, but that mark is part of building a sustainable solution.

The importance of this cannot be overstated – people must own their victories to get anything out of them: the systems must make sense the to the doctors and nurses and all the others who use them. They must take pride in it for it to work. Without pride and a sense of ownership of the many volunteers and supporters of the International Children’s Heart Foundation, it wouldn’t work either.

Richard Murff

Benghazi, Libya

December 4, 2012

And We’re Walking…

Colette and Almotasim are walking

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.

Richard Murff

Benghazi, Libya

November 27, 2012

Babyheart Hits the Ground Running in Benghazi

Victoryia and May sorting things out.

Performing better than twenty heart surgeries in two weeks, producing rich world outcomes under emerging world conditions, the ICHF has never been an organization to waste a lot of time. This was vividly illustrated on November 26^th, day one of the foundation’s second trip to Benghazi, Libya.

Dr. Kathleen Fenton, who has overseen Operation Babyheart in Managua, Nicaragua for the last five years, and Dr. Cameron Greydon of Australia both arrived in Benghazi a day ahead of the mission to assess patients. The rest of the mission was greeted with an ambitious schedule the first day: three procedures in two theaters, with herself and ICHF volunteer surgeon Dr. Ali Dodge Khatami from Switzerland to perform the two VSDs and a PDA.

Most of the team arrived in Benghazi at 8:30 am on Monday morning, but didn’t leave the airport when the donated medical supplies we were carrying were inexplicably impounded. This was as problematic as it sounds. Sorting through the donated supplies needs to be done before the first patient arrives in the PICU. After a lot of bad noise at the airport, the team arrived at the Benghazi Medical Center at two in the afternoon, roughly the same time the first patient, Asmaa, was coming out of the operating theater.

Janine Evans, the team coordinator for the Libya mission, called the charge and the nurses scrambled to change into their scrubs to care for little Asmaa – as well as sort the supplies and set up a modern ICU. The impounded bags arrived at the hospital about an hour later.

These sort of minor fiascos are simply part of the experience on a babyheart mission: pulling order out of chaos is what they do. Asmaa, thankfully, is a brave patient who appears to be able to face anything as long as her hair is in proper pigtails. A lady needs her hairdo, and who can blame her?

With two operating theaters going, at the end of the day shift two more patients arrived in a neatly ordered PICU. So day one ended the way a lot of babyheart missions do: from a morass of strange problems being hammer out in a foreign language to – somehow – a safe and ordered haven for recovering children.

Babyheart Mission Macedonia

A Flat World, Full Hearts….Facebook, Globalization and Technology come together to Mend Baby’s Hearts

To Own Your Victories is to Own Your Future

And We’re Walking…

Babyheart Hits the Ground Running in Benghazi

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