Novick Cardiac Alliance has published a research article in JAMA, a peer-reviewed medical journal published by the American Medical Association. The article is titled “Cost-effectiveness of Humanitarian Pediatric Cardiac Surgery Programs in Low- and Middle-Income Countries”. It describes the cost-effectiveness of providing heart surgery to children in developing countries, but it also accounts for the long-term effects at the individual and societal level.
“The Humanitarian Footprint”, as we describe this the long-term effect, is measured in extra years of life expectancy, extra years of schooling and lifetime income potentially added for the patients treated in our global humanitarian interventions.
It turns out that in 2015 alone, there were 16 932 years of Life Expectancy, 1 484 years of schooling and $67 642 191 lifetime income potentially added to the cohort of patients we operated around the world. We always suspected humanitarian pediatric cardiac surgery was doing something good for our patients and the world. Now we have the data!
Cardiac Alliance is proud to announce that Dr Marcelo Cardarelli received the honor of being chosen as TIAA Difference Maker 100. He is 1 of 100 extraordinary people who are devoting their lives to improving the world and shaping a brighter future for us all. www.tiaadifferencemaker100.org
“’In Libya, there are several thousand children that need heart surgery, including hundreds of new-borns’, says Dr. Novick. That is why, with the support of the Presidency Council and the UN’s World Health Organization, Dr. Novick has launched a one-year national program, hoping to treat more than 400 Libyan children’s hearts.”
Read more in this article featuring Cardiac Alliance’s work in Libya, by United Nations journalist Abel Kavanagh.
Novick Cardiac Alliance worked at Hospital del Nino’s Dr. Francisco Ycaza Bustamante in Guayaquil, Ecuador April 28 – May 12, 2018. This was the first time our team returned to Hospital del Nino since 2014. This trip was made possible by the generous donations from our partners “With Every Heartbeat, the Fialeny Foundation” and support from Ecuadorian charity “Fundacion El Cielo Para Los Ninos.” Our team consisted of 17 medical volunteers from 12 different centers in the USA and Argentina.
Over the two week trip, NCA Cardiologist Dr Mark Gellat evaluated nearly 70 children, performing echocardiograms and assessing these children for heart defects. Led by NCA pediatric heart surgeon Dr Marcelo Cardarelli, fifteen children received life-saving heart surgery in 8 days of operation. We were pleased to discover that the local team in Guayaquil had been continuing their education and teaching new staff skills to become more competent in pediatric cardiac care and surgery. The local surgeon Dr Hernan Montero has been operating in the absence of visiting teams and the ICU has been led by Venezuelan Intensivist Ricardo Briceno. Each morning during patient rounds, Dr Briceno quizzes nurses and new doctors about a specific defect or complication in order to expand their critical thinking skills.
The ICU team was led by PICU nurse educators Farzana Shah and Roslyn Rivera. Our ICU physicians and nurses provided 24 hour care for these children before and after surgery the entire two weeks. Many of the children were discharged from the hospital within 48 hours of surgery. The majority of the children we operated during this trip were between 5-12 years old, with simple heart defects that require surgery in order for them to survive into adulthood. These children have been on a waiting list for surgery for several years, but there are not enough surgeons in Ecuador to provide surgery. The babies born with more complex heart defects are often not as lucky. Complex heart defects require early intervention for babies to survive to age one. Our trip to Guayaquil helped enhance the medical skills of the surgeons, doctors, and nurses so they can continue to provide treatment for children with heart disease in their country.
Milan is a baby with a complex heart defect that requires immediate surgery to survive.
For four months, Milan’s mother watched her baby turned dark blue whenever he would cry. Several times, she took him to the doctor in the village where they live, but the doctor would say that Milan would “grow out of it.” Searching for answers, Milan’s family brought him to the pay-clinic in Guayaquil. There the doctors told her he had a serious problem with his heart and he needed to see the cardiologist at the Bustamante Children’s Hospital. As if by fate, the next day, NCA cardiologist Dr Gellat saw Milan. Just from seeing his blue pale appearance, Dr Gellat knew immediately that Milan did indeed have a complex heart defect. The echocardiogram showed that Milan had pulmonary atresia, meaning blood was not flowing the normal way into his lungs to receive oxygen. His blue color was from severe lack of oxygenated blood. Our team discussed a plan and Milan received surgery to create a pathway for blood to flow to his lungs.
Milan had a difficult recovery after his surgery, but was doing very well when our team left the country. We have received updates from Milan’s parents that is now home and happily growing. His parents were immensely happy to see their baby boy finally looking well.
It’s babies like Milan that remind us how desperately advanced pediatric cardiac care is needed in developing countries. Our teams strive to educate local teams about pediatric cardiology so that babies like Milan can be properly diagnosed and treated early, and given a chance to survive.
When Narges was an infant, her mother noticed she would become blue when eating or crying. She took her to several doctors throughout Iraq, but nobody could give them any answers. Finally a doctor told them that Narges had a heart defect, but nothing could be done in Iraq to help her. They were encouraged to find help outside the country.
At one year of age, Narges’ parents used all their money to take her to India for medical treatment. Here she was finally given a proper diagnosis. She was born with a complex heart defect, single ventricle with mitral atresia. Even in India, Narges was deemed inoperable.
For years, her family watched their beautiful daughter remain blue and ill, which progressively worsened over the years. Narges’ parents took her to several hospitals in Iraq, hoping that someone could help their daughter. Through the strife of war in their country, Narges’ mother never lost hope. She persevered in her search for a heart surgeon that would take her daughter’s case. Finally, she saw an advertisement from Al-Amal Hospital in Nasiriyah Iraq that announced the arrival of an International pediatric cardiac team that was offering heart surgeries.
Dr Novick met Narges in clinic at Al-Amal Hospital in October 2017. At that time, Narges’ blood oxygen levels were only 70%. Her heart was severely enlarged and the improper circulation of blood inside her heart had been causing lung damage for years. Dr Novick prescribed medication to help lessen some of the damage and requested that Narges return to the hospital for evaluation when our team returned the following month.
In November, Narges and her family returned to Al-Amal Hospital to met with our team. Narges’ heart was still severely enlarged and her only option was a palliative surgery that would prevent further lung damage. The hope was that this surgery would improve her quality of life. Dr Humberto Rodriguez performed this surgery and Narges recovered quickly in the ICU. Our team was impressed by her determination, asking to get out of bed the day after her surgery. She wanted to get cleaned up and loved having her hair brushed and braided by nurse Emily. We witnessed the fight inside this young girl, and we understood where she gained her strength from, her mother.
Narges’ mother emotionally described how difficult it was to watch her daughter struggle to breathe, and how she fought to find proper treatment. Both of her parents really understood the severity of their Narges’ heart disease. They were so thankful to our team for offering her this chance to simply have more time in life.
Sometimes, we cannot completely repair a child’s heart, especially those children who have lived for many years with complex defects. This is why we aim to educate cardiologists and pediatricians to diagnose and plan treatment for these children when they are young. For now, Narges will continue to go to school and spend time with her family. This gift of time is what matters most to the families who are barely grasping at hope.
There are thousands of children with undiagnosed heart defects waiting for someone to find them to save their lives. On our inaugural trip to Lebanon, Cardiac Alliance met a child who traveled from West Africa to southern Lebanon in search of a definite diagnosis and hopefully life-saving surgery. How was is that four-year-old Emmanuel, or E-man as his village calls him, who was so sick that he would sleep most of the day, could possibly travel across the entire continent of Africa?! This is a story of perseverance that emphasizes each person’s ability to help a child in need, even when the task seems dauntingly impossible.
Emmanuel was born in July 2013 in the small village of Garplay, Liberia. His mother Kuku describes his inability to eat as an infant, needing to take breaks to breathe rapidly and he didn’t walk until age two. His family was finally able to travel to Monrovia, the capitol of Liberia to find a specialist. Emmanuel was presumed to have hole in his heart, though there is no an echocardiogram machine anywhere in the country to actually check his heart. His symptoms of extreme difficulty breathing, keeping his oxygen levels high enough, and playing with his 4 siblings were tell-tale signs. He would often pass out for hours at a time while his family would gather around and pray over him until he came to.
Liberia was ravaged for 14 years during a civil war from 1989-2003. Because of this war, the country was left with no electricity or running water and very little medical care. While the country is now growing and improving slowly, the medical system is still very primitive in many areas. When it came to E-man, there were no services available to help him, the only way for him to get healing was to go out of Liberia. But that would cost money and with the majority of Liberians being subsistence farmers, including E-man’s parents, Emmanuel and Kuku, saving the money to get heart surgery in another country would be impossible. So they waited and prayed. For four years, E-man miraculously kept fighting; every time he saw a plane overhead, he would say, “My plane is coming to get me!”
This is where Emily and Brian from Florida, USA enter the picture. Emily and Brian work on the child sponsorship team for Light Evangelism Ministry and traveled to Liberia in March 2017. Emily describes meeting E-man for the first time, as “..heartbreaking. He was laying on a bench, gasping for air, and whimpering. His lips were blue. He didn’t even have the energy to sit up.” Emily and her organization committed right then and there to exhaust all efforts to get surgery for E-man.
They made dozens of phone calls, just stabbing in the dark, trying to find a hospital in America that would work pro bono to save this child. After months of trying, they finally found a hospital in Florida willing to do the surgery, but were quickly devastated when the American Embassy in Liberia told us they would not grant a medical visa for any reason.
Back to square one. After putting out a general plea on Facebook, one of Emily’s friends connected her with Elizabeth Novick, a founder of Novick Cardiac Alliance and wife of Dr. Bill Novick. Dr Novick accepted to repair E-man’s heart, as long as they could get him to any of the locations where Novick Cardiac Alliance was working. The first available country was Libya, but within days of travel, the visa fell through. Ukraine was next. But their hopes were quickly dashed as they found out E-man and Kuku would have to fly to Senegal to get a visa for Ukraine. The extra travel would be impossible for E-man in his condition and the money for the extra flights was more than anyone could afford.
After some research, Emily discovered that Lebanon had an embassy in Monrovia, Liberia’s capital city! Now, just three weeks before Cardiac Alliance was scheduled to be in Lebanon, Emily and her organization were pressed for time to raise the money to fly E-man across the continent.
On October 11, Kuku called Emily. E-man had had a horrible couple of days. He wasn’t eating. He was sleeping a lot and was not able to get off the floor. He was so very sick. Again Emily took to Facebook and posted a video explaining the call she’d just received. The money started to pour in, and in just one day, raised more than the amount they needed! They were fully funded, and E-man would have his surgery!
One more hurdle. The Visas. Emmanuel and Kuku went to the Embassy and were told the man who wrote the letter from the Lebanese hospital would have to call the Embassy to confirm the validity of the case. From America, Emily called Rashaya Governmental Hospital and was connected with the hospital medical director Dr. Yasser Ammar. Dr. Ammar called the Embassy, and E-man and Kuku were immediately granted their visas… just 5 minutes before the Embassy was closing for the day!
No more hurdles. No more mountains. E-man’s surgery was on its way.
Emmanuel arrived at Rashaya Governmental Hospital in southern Lebanon on October 23, and our team performed an echocardiogram and officially diagnosed E-man with tetralogy of fallot. This diagnosis explained why E-man would often squat when playing with his siblings, his body’s attempt to get more oxygen. His surgery was scheduled immediately.
On October 25, Emmanuel received his healing surgery and we know he has a beautiful future ahead of him. It is people as determined as Emily that can help us save these children. This story brings us encouragement that individual people in the world have the power to bring awareness and treatment for the number one birth defect, congenital heart defects.
We all have hopes that E-man will provide great change in his home country of Liberia one day!
Artur was born on the 1st of September in Luhansk, the easternmost city of Ukraine. Luhansk has been under the control of the separatist rebel group since 2014, and is known as “Luhansk People’s Republic.” This city was nearly destroyed by the war in 2014 and many public services are difficult to obtain, including quality care at hospitals.
When Artur was 5 days old, his mother noticed he was breathing very fast and turning blue. She took him to the hospital in Luhansk but the doctors were unable to give a definite diagnosis and sent him home. Weeks continued and Artur’s mother became more concerned with her baby’s blue color. Again she went to the hospital and after several tests, the doctor thought he noticed something wrong with Artur’s heart. Finally the doctor in Luhansk called the Kharkiv Cardiac Center. This doctor sent a photo of Artur’s chest x-ray to Kharkiv pediatric cardiac surgeon Olga Buchevna and she recommended Artur be transferred immediately to Kharkiv.
Upon his arrival at the hospital in Kharkiv, cardiologist Daria Kulikova performed a echocardiogram and diagnosed Artur with Transposition of the Great Arteries, plus a tiny ASD and tiny VSD. This heart defect usually must be repaired within two weeks of age, and Artur’s was very severe. He was not getting enough blood to his body or brain, with oxygen saturation levels barely 50%. His surgery would be complicated. Luckily our team arrived three days later and on October 9th, Artur received his life saving heart surgery. Kharkiv pediatric cardiac surgeon, Olga Buchevna, performed this surgery flawlessly with assistance from Cardiac Alliance surgeon Kathleen Fenton. Artur recovered quickly in the ICU and was drinking milk two days after surgery. His serious facial expressions proved to us that this little boy has a strong will to survive.
There are babies like Artur around the globe, fighting for their lives, waiting for medical assistance to mend their heart defects before it’s too late.
Jordan Campbell- A writer and filmmaker travelled with us to Tobruk, Libya. His story was recently published in National Geographic Adventure. You can read the whole article below. With your helpwe can continue to support our projects in countries like Libya.
I am sure you remember the childhood story of the Ugly Duckling who was constantly reminded of his physical shortcomings as he grew up. Children with single ventricle defects remind me of this story of the Ugly duckling who grows up to be a beautiful swan.
Unlike most of us, who have two ventricles, children with one ventricle spend a great deal of their childhood as in-patients in hospitals or visiting doctors in out-patient clinics. They are poked routinely for blood tests, examined constantly for the functionality of the one pumping chamber they have and questioned by other children as to why they can’t play the normal childhood games . Against this nearly continuous barrage of unwanted attention these children must grow up, go through the normal milestones all kids attain and become adults, with little knowledge of how long they have been granted time on this earth.
We don’t know how long these single ventricle operations will keep children alive because the operation is only 43 years old itself and has undergone so many modifications that much of the previous research experience is now meaningless. We do know that the latest versions of the Fontan-Kreutzer Operation are keeping more people alive longer, but whether that will translate into a life-span on this earth that approaches normal is unknown at this time.So an uncertain future, harangued and harassed as children and told they are not the same as others, does this not sound like the Ugly Duckling?
Twenty-one years ago in Kyiv, Ukraine there was a child of 7 years of age, who wore the label of single ventricle, or Ugly Duckling. Julia lived in a country where few Fontan procedures had ever been performed, and certainly not with success. The first picture, taken just after discharge from the ICU, does not reveal the Swan that she would become. As a young woman post Fontan she did not know she was supposed to continue in the Ugly Duckling role, she decided that since she had been given a second chance at life she would use every second to live life to her full capacity.
So our Ugly Duckling finished primary school and overtime the Swan began to emerge, first exceling in her advanced studies and then entering into a career that no Ugly Duckling could have imagined she became a successful Fashion Model. Traveling to far away sites for modeling shoots, what about a single ventricle scuba diving? Today she is considering the next career in her eyes, she wants to be a mother, and this is what reunited us 21 years later. She had developed an urge so powerful to meet the surgeon who had given her the opportunity for this second birthday and new life that she did not quit searching until she succeeded. I met this new Julia in Ukraine just last week.
Parents of children with single ventricle should celebrate the lives these children have and always remember that these ‘Ugly Ducklings’ can and do grow up to be magnificent Swans.
David is 15 months old and has been fighting to survive against all odds. David was born in Nigeria, which is a country without a pediatric cardiac surgery programme. Children in Nigeria who need a heart operation have to wait until a foreign team visits their country and hope that they are put on the short list.
David had a very complex heart disease called Truncus Arteriosus (the Goliath of this story) and for most visiting teams this was not a type of surgery that they would perform on a short surgical trip. Not because they did not want to but because they knew that David would take a long time to recover in the ICU as he would be very weak and sick
At Cardiac Alliance we believe that empowering the local team to care for children like David is just as important as performing multiple surgeries on a trip. During the first week of our recent trip to Nigeria we worked with the amazing team of nurses and doctors in the ICU in and helped them to prepare to receive a baby as delicate as David
David had surgery at the beginning of our second week and he did very well. He was very sick but the local Nigerian nurses learned how to care for him quickly. One nurse would sit beside him and rub his feet until he fell asleep because it was important to keep him calm – we said that she was better than any medicine!David won his battle- and with your help we can continue to care for children like David as they fight to live healthy and happy lives. We hope to make many more trips to Nigeria in the next few years, Volunteer with us or Donate today to make this possible.