It is a rare moment in life when you get to see so many selfless people come together to help others. ICHF is honored to be an organization that hosts moments like these in 45 missions this year alone. For the past 20 years, ICHF has held missions where experts in pediatric cardiac care donate their time, money and skills to save the lives of children worldwide from congenital heart disease. These experts set aside much deserved time off from their careers to attend our missions and heal the hearts of children in need. Below is an excerpt from our guest blogger Babyheart PICU Nurse Educator and Coordinator, Farzana Shah, who has generously aided our missions for the past year:
“I heard of ICHF through a flyer in the ICU that I work at in Philadelphia…it’s like saying you met your future husband at the bar…not exactly romantic, but that was the seed. I did some research and heard only good things about Babyheart. I saw how many people are helped by this one organization and I was hooked. I had to learn more. So, I completed the online volunteer registration form and scheduled my first trip with ICHF to Najaf, Iraq in September 2012.” (During this mission, with the help of a team of volunteers including Farzana, we healed the hearts of 14 children with CHD’s. Farzana has now volunteered on five of our Babyheart missions).”
During her 4th Babyheart mission (our 14th mission to Guayaquil, Ecuador), Farzana helped save the life of a 5 year old boy named Ricardo. Ricardo suffered from a complex heart defect known as tetralogy of Fallot which is characterized by the combination of four CHD’s:
1. Pulmonary valve stenosis, due to the absence of his pulmonary valve, Ricardo’s pulmonary artery is abnormally narrow impeding blood flow from his right ventricle to his lungs.
2. Ventricular septal defect, resulting from the hole between Ricardo’s two ventricles permitting oxygen-poor blood from the right ventricle to mix with oxygen-rich blood from the left.
3. Right ventricular hypertrophy, characterized by a thickening and enlargement of the muscles of Ricardo’s right ventricles.
4. Overriding aorta, where the main artery exiting his left ventricle appears at the opening of both his left and right ventricles, permitting oxygen-poor blood to flow through the VSD into his aorta.
Because of the severity of Ricardo’s defect, he suffer from “blue” spells where he would turn blue due to the lack of blood permitted to the lungs preventing oxygen to reach his body. Without a corrective operation, the lack of oxygen would not only damage Ricardo’s heart, but also his brain.
Ricardo would need to receive multiple operations. When Ricardo was 2, his heart was in such bad condition, Babyheart Founder Dr. William Novick had to perform a preliminary procedure to prepare him for his future operations. Ricardo received two more corrective procedures this year on July 30th from Babyheart surgeons, Dr. Marcelo Cardarelli and Dr. David Maldonado Gonzalez. He will come back early next year to be evaluated for his next operation which will hopefully be his last.
Ricardo came to visit our team during our 15th mission to Guayaquil this past September. While playing his all-time favorite, Angry Birds, on Farzana’s phone, she recounted her passion for helping these children:
“I can’t say enough about the positive experiences that I have had working with ICHF. With each good and sad situation, you learn to bring the best care possible to these children while adapting to different environments and dealing with the lack of resources, while also ensuring that you are supportive to the family and caring for them as well. Seeing Ricardo come back this mission, and looking like a completely new child; inquisitive, smiling, happy- I could have kissed his cheeks till they turned red and it still wouldn’t have been enough to show how happy I am to know he is doing well.
My experience with ICHF has given me so much growth, both personally and professionally. The ability to be flexible and open to learning has made me a stronger, better nurse. I have worked with some of the most talented people that I would have never had the opportunity to meet if it wasn’t for ICHF and the friendships I have made are incredible.
These trips are like little the wonders of the world…you meet everyone the first Sunday of the trip, some familiar faces, some are first timers, all from different walks of life, and everyone clicks. We find a rhythm and our common goal: to help…help the children, help the families, help our local colleagues learn, help make the lives of those people we come across a little better. When you are asked by someone “how long have you all worked together?” They don’t believe it when you say, “3-4 days”. It’s unexplainable even to me still, the teamwork and dedication that happens in just two weeks with so many variables- a relationship that would take years to build, comes together in just days.
If I could thank each donor and sponsor for making it possible for me and others alike, who have this passion to breakdown social and economic walls in order to provide a child a chance at life; it could only be expressed by looking at Ricardo, and seeing that he has a chance, because of them.”
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.
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.
Sunday was our first official day in Santiago, Dominican Republic, we didn’t know what to except when we arrived at Hospital De Ninos Dr. Arturo Grullon for patient consultations, maybe a room full of extremely sick children on gurneys? It was not however the image of a seemingly healthy looking and carefree seven-year-old Jasmin Alcantara who in fact suffers from Tetralogy Fallot, a condition involving not one, but four defects of the heart.
Made only more severe by Jasmin’s age, but she is not one to let a heart defect keep her from showing off her dance moves or playing catch with the team volunteers. Jasmin shows resilience, a trait she shares with her mother, Ms. Alcantara, who first became aware of her daughter’s condition two years ago, when she witnessed her active child over exert herself while playing and begin to turn purple. Unfortunately circumstances would prevent any effective treatment till recently. The single and unemployed mother of three, heard about the International Children’s Heart Foundation through a visitor to her daughter’s school. Though it was an extreme financial strain on her and her family, Ms. Alcantara traveled 6 hours from the town of Las Matas de Farfan and even borrowed the six thousand pesos(the equivalent of $157.89) necessary to make the corrective surgery possible for her daughter from another patient’s mother at the hospital.
For two day’s Ms. Alcantara sat by her daughters side, separated only when Jasmin was finally taken to the operating room. After four hours with Surgeons: Dr. Iguidbashian, Dr. Ramirez, Dr. Gilbert, Cardiologist: Dr. Desessa, Anesthesiologists: Dr. Stenquist, Dr. Steward, and team of dedicated nurses and volunteers, Jasmin came through her surgery and is currently resting her feet so she can dance down the halls of the hospital tomorrow.
From May 8th through May 22nd, ICHF has a medical team in Kharkiv (or Kharkov), Ukraine. Kharkiv is the 2nd largest city in Ukraine. The city is located in the northeast of the country. As of 2006, its population is 1,461,300. Every year, 6000 children are born in Ukraine with genetic heart diseases. Only will half will receive the surgeries that they need to survive, and will die. (Info from our partner, Chernobyl Children’s Project).
Some pictures and stories (Thanks to Frank Molloy of ICHF and Caroline Lonsdale, Volunteer)….
This is Natalie – age 24 – she was operated on Thursday 13th of May – the fourth day – of the 8th Mission of ICHF to Kharkiv. Interviewed Friday 14th May
When I met her on friday morning she slightly surprised me by speaking reasonably fluent English – she called me over in english – at this time she still had most of her tubes and wires in place – “Is my operation over, was I good?” – she was at this time less than 24 hours after her surgery “you have golden hands” she told me – a message I think to the whole team – she was hot and uncomfortable and I helped her sit up and sponged her back with a cold flannel -
She asked and I told her that today we would be taking out all her tubes – not to worry – and that she would have some medicine to make her a little sleepy and pain free while we did that , we did that – and she slept off the medication for a few hours – and then I took this photo..
Natalie is 24 – pictured with her sister Dina – 26 – Natalie was born with an abnormal Aortic Valve which had become leaky and was in need of replacing. The defect had been diagnosed 2 weeks after birth – so Natalie knew she had a heart problem all her life – with this type of defect the usual plan is to wait as long as possible before any surgery – as the natural valve can still function well for many years. Natalie told me how in recent years she had become increasingly tired and sweaty and get a headache with any exertion- she also described how her hands and feet would swell up and she described them as “ugly” – she likes to swim, and do disco dancing but could not do this as much as she wanted to in recent years. When asked what she was most looking forward to in life now – she said (through her sister Dina whose English was better than Natalies’ ) she wants to satisfy her soul, be pretty – get a husband and have children . Natalie and her sister both work as sales managers – which they described as “not hard work’ meaning physically she could manage that type of work with her heart problem.
She has a yellow and red cat – likes reading, swimming in the Black sea – likes driving a car and wishes someday to drive a motor boat, a popular pastime on the black sea by Odesa.
Natalie was very tired at the time of this picture – she wanted to leave the ICU and go back to her room – because she could not sleep here – her oxygen tube had been recently taken off her and if her oxygen levels stayed OK I told her she would for sure be able to leave in the next hours or two – I also told her that – subject to her surgeon Olga ( the local chief cardiac surgeon) she would probably be able to go home on Monday. Natalie was very surprised at this – and I followed up by asking what she was most looking forward to when she got home – “Drinking lots of cold water-” she said (fluid restriction after cardiac surgery makes many patients feel very thirsty) – she then looked away from me – grimaced – I thought she was going to laugh but she started crying , wiped her eyes – and said that the other thing she was most looking forward to was holding her mother, and her brother.
Some of the other patients include:
Kamila Cherkasova – 25 days old. Double outlet right ventricle. Right BT shunt performed. Kamila has been sick, but is getting slowly better. Remains in ICU, but is not on a ventilator.
Elina Lemoschenco – 1 year old. Patent ductus arteriosus. Elina had a PDA ligation, did very well. Discharged from ICU the following day.
Tatyana Golubkova – 17 years old. Aorto-atrial fistula and PFO. Tatyana had this repaired, extubated quickly and discharged from ICU the following day.
Achkason Bogdam – 16 months old. VSD closure. Extubated quickly and doing well.
Tatyana Lazazova – 3 years old. PDA ligation. Extubated quickly, and doing well.
Angelica Kurligina. 17 years old. Atrial septal defect repair, also found to have total venous anomalous drainage in OR (suspected by our cardiologist) which was also repaired. Angelina was extubated within 20 minutes of arrival in ICU. Discharged to the ward the next day.
Julia Kostomarova: 4months old. Tetralogy of Fallot with patent foreman ovale. Complete repair done. Extubated the following day. Remains in ICU at present with heart rhythm issues, but doing well.
Kristina Terehova: 4 years old. Tetalogy of Fallot with right pulmonary artery stenosis, who had had a previous BT shunt (not sure where) – Repaired. Extubated an hour after arrival in ICU. Should go to ward later this afternoon.
Dima Grudina: 2.5 years old. Atrial septal defect. Repaired. Extubated a couple of hours after arrival in ICU. Walked to the ward the next day.