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
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.
During the week of November 10-17th, the International Children’s Heart Foundation program in Kharkiv, Ukraine received some very distinguished guests. US TV actress, Stephanie March of Law and Order fame, and a strong child health advocate, visited the Kharkiv Center of Cardiac Surgery, where ICHF volunteer medical missions average 5 trips a year, operating on 280 children in the past 4 years. She arrived with World of Children co-founders, Harry and Kay Leibowitz, who support Chernobyl Children International, represented by founder Adi Roche, who in turn, supports ICHF’s Babyheart medical missions to Kharkiv. As an actor, Stephanie makes a living pretending to be a lawyer on TV, although she is very aware of real world problems, such as congenital heart defects and is doing something to alleviate the issue. The Center’s director, Dr. Igor Polivenok and ICHF’s biomedical engineer, David Weiduwilt, took a day to provide a tour of the facility they worked so hard over the years to build.
One unique aspect of the Center is the observation dome directly above the operating room for visitors and students to obtain a rare bird’s eye view of a surgery. David and Igor took Stephanie and the group here first to view a surgery from the eyes of a surgeon. Then they guided them through rounds in the Pediatric Intensive Care Unit and the newly renovated ward rooms. Kay became very emotional here while visiting with the children. She experienced firsthand the children’s helplessness as they fight and cling to life following such an arduous experience for their tiny bodies. Stephanie and Kay visited every bedside to spend time with the kids. They left many gifts here for the children and left the remainder in a newly renovated play room. The gifts are a thankful diversion for children fighting through discomfort, pain and boredom as they recuperate. Then they shared lunch and Dr. Polivenok gave a presentation on the work of ICHF and its dedicated staff, illustrating the great sacrifices made by those who volunteer to provide medical care for patients and training for the local staffs. Afterwards Igor arranged for the visitors to enter the OR for a surgery and conduct a question and answer session to learn more about congenital heart defects. Sadly, many children here are affected by the “Chernobyl Heart,” from which the Oscar winning 2004 documentary featuring ICHF’s Founder and Medical Director, Dr. Novick, took its name. This is a condition of heart defects caused by the radiation fallout from the disastrous explosion at the Chernobyl nuclear plant in 1986. This event and the suffering it wrought upon the children inspired Adi Roche’s creation of Chernobyl Children International. The explosion happened 26 years ago, but much like the scar on a child’s chest from surgery, the effects are still being felt like a great scar across Ukraine’s landscape. The child’s scar will heal and go away, but we will never know if the radiation damage on these helpless children will ever go away. That is why this land is blessed by the medical teams of the International Children’s Heart Foundation.
Afterwards, David escorted the group to view the cath lab and then they viewed a video presentation. The representatives confirmed their continued support for this wonderful program and recognized the need to keep it going. Before finishing the day, the guests were able to see the transfer of a patient from the healing hands of the operating room ICHF staff to the caring hands of PICU ICHF staff. After some coffee, ICHF bid farewell to their special guests and they were on their planes back home to spread the word about the wonderful work being done around the globe.
The ICHF was delighted and honored to have World of Children representatives Stephanie March, and co-founders Harry and Kay Leibowitz, to travel so far to see firsthand the impact of their donations. The ICHF surgeons, doctors, perfusionists, and nurses all perform the work, day in and day out with one goal in mind: save kids’ lives who, without ICHF, would not have a fighting chance at life. While ICHF is very busy performing this great work, it is good, during this season of thanks, to give gratitude to the various caring organizations that offer monetary assistance to keep the teams on the planes, the operating rooms filled, the PICU staffed, and the new hearts beating, full of life, inside tiny chests.Bryan Artiles email@example.com
Matias was one of the first patients of the September Babyheart Mission to Guayaquil, Ecuador. He was scheduled as the second surgery on the first day of the mission. He was asleep in his father’s arms in a lonely corner of the operating room hooked up to an IV. The ICHF medical volunteer perfusionist Miguel Garcia came to introduce himself, assure the father, Jose his son was in good hands, and offer comfort. He asked if he could pray with him. They prayed together and then Miguel left Jose Luis and he continued to pray and talk to his son, tears dropping down onto Matias’ peaceful face. The gravity of the moment had arrived. A rush of memories must have flooded Jose’s mind at this time. He had to be thinking of Matias’s birth and their pediatrician telling them something was wrong with Matias but didn’t yet know. Then came confirmation of the devastating news of his son’s heart defect that without surgery, would eventually kill him, discovered at 2 ½ years old. This was followed by numerous visits to their pediatrician and visits to the heart clinic every two months. After this came visit upon visit and waiting hours upon hours in doctor’s waiting rooms and cold hospital floors only to learn that while his son’s condition was diagnosed they did not have the money for the type of surgery to save his life. Every two months they went to the pediatrician and heart clinics looking for answers. They ran into dead ends at every turn. The surgery he needed to save his son’s life was unavailable to him in Ecuador.
A glimmer of hope was seen as he made it to the Francisco Bustamante Children’s Hospital in Guayaquil. They learned about a United States –based organization called International Children’s Heart Foundation that leads a medical mission to Guayaquil, Ecuador about 3-4 times every year and they have surgeons that can fix his son’s heart condition. Jose and his wife Dexe pursued this but had to make more visits with cardiologists, both Ecuadorian and American and more evaluations which came with more time in waiting rooms and more 2 ½ hour trips to / from their home town of Quevedo. Then came the news that Matias was selected for surgery and despair gave way to new hope. Jose brought his son to the hospital expecting surgery thinking he was going to get his day but were turned away on two different missions because Matias had a cold. The child needs to be perfectly healthy to undergo heart surgery to minimize all risks. Then finally as the stars aligned and the miracle of ICHF came back to Guayaquil, he and Dexe made their third trip. This would be it. They could no longer watch their son slowly wither away and die. This time in September of 2012, on the 23rd ICHF Babyheart mission to Guayaquil, they made the trip and Matias was healthy and put on the list for surgery. His time had come. All these memories must have come to mind as he held his son in that lonely room. ICHF volunteer anesthesiologist, Dr. Sri Patankar came to take Matias away, still asleep and most assuredly dreaming of all the things he can do such as play, run, climb stairs, run all over a playground, things he cannot do with the current condition of his heart. Sri gently cradles him in his arms and takes him away from Jose. Sri lays Matias on the operating room table and set to the work of preparing Matias to be able to breath, stay soundly asleep and withstand the rigors of surgery.
ICHF full time staff surgeon Dr. Kathleen Fenton, who runs the Managua, Nicaragua program, oversaw the surgery. She was actually operated on another child in another room then afterward came in to assist Dr. Sergio Hernandez whom she trained herself through ICHF’s Managua program. This is the full ICHF mission statement, building sustainable programs, in live effect! ICHF staffer and medical mission veteran, Erin Brenner served as the RN, first assist on the surgery.
Four hours later Matias was wheeled out to the PICU a new boy, reborn. He came out with a bouquet of wires, tubes and chords pouring out of him. They rolled him into the ICU with surgeons Kathleen Fenton and Sergio Hernandez walking in tow. The team, led by ICHF head PICU nurse Frank Molloy, the bandana-wearing Britain, moved quickly to prepare Matias for the ICU. Frank is an ever present force in most ICHF PICUs as he is critical to research and responsible for the fast-tracking recovery methods that help ICHF patients get moving and untethered from all the tubes and needles and into recovery and out of the hospital into a new life. Dr. Patankar vocalizes the story of the surgery and alerts the staff to the chemicals and medicines coursing through Matias’ body. The course of surgery is critical knowledge to how the ICU staff will administer care. This expert staff was led by Intensivist Dr. Daniel Garros, Respiratory Therapist, Lindsay Bailer, and PICU RNs Lorraine Hodson, Michelle Miller-Payne, Colleen Griesuk, representing the Canadian contingent, and then there was PICU RN from Vanderbilt Children’s Hospital Kelly Davis and an RN from Seattle, Lisa Davidson.
An integral part of ICHF Babyheart missions is to allow the parents to enter the ICU and be with the children. Frank has proven case after case, mission after mission that parents are part of the child’s healing process. Jose Luis and Dexe came to see their son and never left his side, as they traded off shifts with him, due to limited space. This was a time of holding hands, softly whispering songs into their son’s ear and watching over him, comforting him during the brief episodes of pain. Then came the big moment when he gets to get up out of bed and give his heart a good test run. Matias got up and with his father at his side walked three laps around the nurse’s station. That means preparations are made to get him up to the recovery room. He is then unhooked and now he is living on his own with his new heart for the first time.
The perfusionist Miguel who prayed with Matias’ father pre-surgery now came to visit him post surgery. They visited and spoke together and Jose Luis called the ICHF medical team “angels” and implored them to continue their work to save lives. The first patient of the mission, Ignacio Solarzano and his abuelita, Angelina, kept bouncing balloons back and forth between each other with Matias. Miguel then gathered the two families together and led them in prayer, the first in pre-op a prayer of hope, now on the other side in recovery, a prayer of thanks. Miguel left, returning to the operating room for more life-saving surgeries throughout the week. ICHF sets to the work of healing hearts and the kids are able to get back to being kids, here on this 23rd Babyheart medical mission to Guayaquil, Ecuador.
A single mother of three makes the decision to give her newborn son up for adoption. Since birth the only home Wadson has ever known is the children’s home in Des Pinos, Haiti and his parents the 32 staff members who work there. Whether it was because of his heart defect or just the financial burden of raising a child in one of the poorest countries in the world, no one knows why his mother made such a decision. And it’s a question that according to the staff at the children home, is forever present in his eyes. As sad as this story may be it does have it’s silver lining, like all things in life, without the love and care of the staff at the children’s home, who helped to bring Wadson to the Dominican Republic and ICHF, he might never have received the life saving treatment he needed for his heart defect. Wadson has had his surgery and is recovering well, he also received the news that he would be adopted by Melissa, the children’s home owner, who has played the role of mother to him the past few years.
Three-year-old Skerlyn, might be sick, but he still manages to keep all the nurses wrapped around his pinky, for what he lacks in health he possesses in charm. And you can always find him in the arms of one nurse or another, he’s ever loyal subjects are there to carry him around. His parents first learned of his condition one month after his birth, in which the doctor immediately ordered surgery for Skerlyn. Due to his heart defect Skerlyn frequently suffered from falls, fainting spells, and he tired easily when playing.
After receiving his surgery on Tuesday, Skerlyn has resumed his throne, this time in the recovery room, and he orders his subjects to fetch him “ague” every chance he gets. Soon Skerlyn will be well enough to conquer new territories and to that we say “¡Viva el Príncipe”
Sometimes it’s hard to imagine how congenital heart defects really affect children, when we ourselves are not affected. Some children experience minor symptoms like shortness of breath or dizziness, whereas with other children, like Hilda Moronta Lora, their heart defect robs them of their entire childhood.
Due to her condition Hilda has been unable to walk on her own, go to school, or even play. Because she could not attend school due to the severity of her condition, Hilda, who is now eleven years old can only write her name, she cannot read, write, or even count past ten. The effects of her condition do not end there. At a time when most children in the United States are entering puberty, Hilda barely weighs a hundred pounds. Despite the obstacles her condition has caused she has a fighting spirit, one that has impressed the team of doctors, nurses, and volunteers who work with her each day.
Having received her surgery Monday, Hilda is recovering remarkably well and is now walking. And there is no doubt that soon she will be flying.