Mountains are typically used as metaphors for the uphill battles and challenges we face in our lives. Some mountains are bigger than others, and some of us have the tools to scale these mountains, while others do not. In this week’s Ask a Children’s Heart Doctor series, Dr. Harm Velvis discusses his time in La Paz and the uphill battle of helping children in developing countries.
Imagine embarking on an uphill journey, where the air thins out with each step you take. Now, envision scaling this mountain not just for the thrill of it, but for a heart-warming mission—saving children’s lives, even at a staggering altitude of 12,000 feet.
With our 10th visit to La Paz around the corner, we have a touching tale about a 9-year-old, Bolivian child with Down syndrome named Keyler. This is his story.
The Altitude Challenge in La Paz
Keyler was born and raised in La Paz by his grandmother, Rosaura. His mother died tragically when Keyler was just 5 years old, and his father did not want to take care of a child with special needs. Keyler’s grandmother became his source of love, comfort, and everything else he needed.
Life in La Paz doesn’t follow the easy route. Due to its towering elevation, this city takes your breath away—literally. Those who venture here from lower altitudes often experience symptoms including difficulty breathing, rapid exhaustion, and headaches and nausea
Coincidentally, some of the symptoms that our medical staff experience at high altitudes are similar to those that children with heart defects experience every day. Though we cannot ever truly understand their struggle, high altitude does provide just a little bit of insight as it relates to their day-to-day lives.
“Before the surgery, he was always tired. He had to take frequent breaks to recover, while grandma waited patiently,” Dr. Velvis told us.
In contrast, the children here, acclimated to the sparse oxygen, embody resilience. While congenital heart disease (CHD) occurs somewhat more frequently at high altitudes, especially defects on the right side of the heart, the high altitude also plays guardian, shielding these kids from severe heart and irreversible lung damage. It’s as if these children have their own natural armor, allowing their delicate hearts to withstand more than you’d think possible.
As Dr. Velvis explains, “Keyler’s heart defect was a late diagnosis… in the US we pick up a ventricular septal defect (VSD) or a hole in the heart in the first year of life. If the defect is large enough, surgery is provided in a timely manner. At sea level, 9 years old may be too late, there may be too much damage to their lungs. But because he lives in La Paz at a high altitude, there was no irreversible damage to his heart and lungs. The high altitude protected Keyler’s lungs… the high altitude allowed him to have this surgery,” Dr. Velvis said.
In a fortunate twist of fate, it was this high altitude that may have saved Keyler.
Keyler Is a Glimpse of An All Too Common Problem
“Keyler spent most of his life oblivious to the fact that he had congenital heart disease (CHD). In most countries of the world, especially in developing countries, and even more so in rural areas, there is little awareness that children can have heart disease” Dr. Velvis said.
Access to basic medical care and primary care physicians is very limited at best and completely nonexistent in many cases.
“Children with heart defects like Keyler, are not screened, and they simply live with these debilitating conditions untreated. Keyler was living with a VSD without anyone knowing it.”
The main signs and symptoms of a VSD are:
- Breathing fast
- Difficulty breathing
- Excessive sweating
- Poor feeding
- Getting tired when feeding
- Poor weight gain
This all changed when his grandmother watched a TV infomercial about CHD symptoms, thanks to the local healthcare team.
Keyler experienced breathing troubles and fatigue. These challenges compounded Rosaura’s life, a diligent housekeeper who also sells sodas by the roadside. Keyler would accompany her everywhere, albeit at a slower pace.
After hearing the TV program, Rosaura knew she needed to get Keyler screened for congenital heart defects. After discovering that Keyler was living with a VSD, the Gift of Life International team snapped into action.
In May 2023, Keyler’s life took a new, exuberant turn. Gift of Life International’s team performed a successful surgery, not only healing his heart but also rejuvenating his spirit.
A Global Issue with Local Solutions
Unbeknownst to many, CHD stands as the most common birth defect. Approximately 1 in 100 children worldwide are born with CHD, which equates to an astounding 1.3 million children each year. Early diagnosis can make all the difference, but in developing countries a late diagnosis is common, primarily due to a lack of awareness and a lack of access to primary care physicians.
Bolstering Hope and Healthcare in Bolivia
Through continuous efforts, Gift of Life International working closely with a like-minded organization (Haiti Cardiac Alliance) has put much effort into program development in Bolivia including upgrading facilities, developing a national database, and hiring a national coordinator. The database and the national coordinator Karla ensure that children like Keyler after being diagnosed, receive the life-altering surgery as well as continued care and support.
Karla is essential in encouraging parents to get needed surgery for their children, to dispel misconceptions about heart surgery in children, and to help families with transportation and childcare.
Dr. Velvis explains “In many developing nations, there is a common belief that you cannot fix a heart defect in children. So parents and families are hesitant to get the needed surgery.”
Why It’s Important to Donate to International Charities
While children in the United States have access to early diagnosis, to appropriate specialty care by pediatric cardiologists, to medications, to timely surgery, and to follow-up care, many children in developing countries do not.
We are well on our way to helping 5,000 children from around the world, just this year alone.
If you’ve followed us this far on our journey, maybe you’d like to help us climb the next mountain. Support our cause by making a donation.
The bottom line? Gift of Life International provides life-saving surgeries, other life-saving procedures, and tools for program development; in short, we offer children with CHD a chance they would not otherwise have to climb toward a better life. One heart, one step at a time.
For more inspiring narratives and updates, keep an eye on our Gift of Life Stories.
Rob Raylman is the Chief Executive officer for Gift of Life International. He assumed this role in 2008.
Rob is a life-long resident of New York State. He graduated Hobart College in 1984 with a BS in Political Science. Over the years, he worked for US Senator Alfonse D’Amato and held the position of Vice President for Browning-Ferris Industries (at the time, the second largest international solid waste company in the world). In 2008, Rob created the position of CEO for Gift of Life International. Since then, he was visited 38 countries on 5 continents to build the Gift of Life Global Network of 84 affiliates. During Rob’s tenure with Gift of Life International, 30 affiliates have been created while over 35,000 children have received care for their heart defects.
Rob focuses on strategically building bridges between Gift of Life programs, foreign Governments, Rotary Clubs and Districts, like-minded organizations and hospital administrations in order to address the Global Crisis of congenital heart defects.