Newborn Hope: Reaching Care Across The Border
Ema’s parents traveled hundreds of miles — and across the border — to find the right diagnosis and treatment needed to save their daughter’s life.
More than half of Venezuela’s doctors have left the country since the start of the Venezuela crisis, and medicine and equipment shortages are crippling — leaving some hospitals with little to no power and no supplies. As the health system collapses and conditions worsen, thousands of Venezuelan families cross the border into neighboring Colombia looking for urgent health care. Hospitals and clinics are to capacity, but Project HOPE is there so medical teams don’t have to turn people away.
This is when we met Ema: an acutely malnourished 3-month-old with Down syndrome and a congenital cardiac defect.
Naylet weaves in and out of the mayhem of the crowds at the Colombia-Venezuela border, clutching her 3-month-old daughter Ema to her chest. Her eyes are tired, her face is worn with stress. High winds and swirling dust assault the eyes and nose. Ema is swaddled in a worn fleece blanket. They move past endless lines of taxis taking people to and from the bridge crossing. Past vendors lining the streets selling basic food and small essentials – potatoes, onions, water, medicines and candles. Around a long line out the door of the supermarket, monitored by an armed guard. Finally, they reach their destination: The bus, which will take them to the hospital for a checkup.
Ema is the reason they’re here. Born with Down syndrome and a congenital cardiac defect, not long ago Ema was on the brink of death. In Venezuela, Ema received “erratic” treatment for high blood pressure. Her parents, Naylet and Luis, were told something different everywhere they went — a different diagnosis from every doctor. She was prescribed blood-pressure medicine and diuretics, and Naylet was told to feed her only three times a day. Ema’s health took a downward spiral: She quickly became dehydrated and kept losing weight. They went to multiple cities in Venezuela seeking help and were continuously turned away. “We couldn’t find a solution,” shares Naylet. “We didn’t know how a country so rich couldn’t provide the basics.”
Giving up wasn’t an option. Left with no choice, they packed up and left home in the small town of Calabozo to look for help across the border in Colombia, where they were met with the same response at clinics and hospitals. Naylet can count up to 23 different places they went looking for help — at least nine in Venezuela and 13 in Colombia. “Every day I was knocking on doors. I did everything I was told. The doctors didn’t help. My faith is the most important thing I have. We accepted and continued.”
Then they found Project HOPE, in Cúcuta, thanks to a referral from another organization.
Ema landed on our doorstep acutely malnourished, with “skin like leather” – an extremely rare condition for an infant who is breastfed. According to Dr. Atilio Rivera-Vasquez, our country representative in Colombia (and one of Ema’s doctors), malnutrition in infants is not something you see before six months. “I was astonished at the poor treatment received in Venezuela. How can a baby of three months become malnourished? The baby was going to die.”
Upon seeing Ema, completely lethargic and unable to move her arms or legs, Project HOPE doctors immediately suspended the blood pressure medicine and diuretics. What she needed was an EKG, and to eat. Now, she’s being fed on demand and is eating up to eight times a day — Naylet supplements her breastmilk with formula for extra nutrition.
The mission to keep Ema alive has taken a huge psychological toll on the family. Naylet shares she’s been depressed. It’s not hard to understand why: It’s been a year of incredible sacrifice, strain and stress. They had to leave their son Roberto behind in Venezuela, with Naylet’s parents, and their life at home has been on an indefinite pause.
In Cúcuta, Naylet and Luis live off of a diet of stuffed potatoes for lunch and arepa for dinner (a tortilla-like bread, usually stuffed with ingredients such as cheese and meat), which is giving them digestive problems. They don’t feel well. All of the money they have first goes to formula, diapers, medicine and anything else that Ema needs. They live in a small room on the top floor of an overcrowded hotel, a 10-minute walk from the Simón Bolívar bridge. A few steps from their room is an open-air area with 22 beds where entire families share double beds.
Meeting Dr. Atilio was the turning point Naylet and Luis have been hoping and searching for. Long overdue, but just in time. “I felt calmer,” says Naylet. “I had all the confidence in the world. Someone is listening to me and cares about my daughter.”
Ema gained 387 grams in the first week her feeding schedule was changed. Once she weighs 10 kilos, she’ll be ready for the heart surgery she might need.
“I’ve been helped by so many people and I want to help in return. I want to give back all the support I’ve received, and so much affection for my daughter.”
Ema has slowly come back to life. She’s animated and smiles at everyone in the room; we can only imagine what she’d say if she could tell the story of the first half-year of her life.
“I’ve been helped by so many people and I want to help in return,” says Naylet. “I want to give back all the support I’ve received, and so much affection for my daughter.”
With Ema’s health stabilized and steadily improving, Naylet and Luis felt able to return home to their life in Venezuela – 500km by foot and by bus – to reunite with their son and parents and to work. Luis’ family has a farm where he’s helping with the harvest, and Naylet works as a labor attorney representing merchants and civil workers.
They plan to make the journey back across the bridge to Colombia in November for another checkup. We’ve connected them with a cardiologist in Bogotá, who’ll perform the surgery if and when Ema needs it; the cardiologist wants to wait and see if the defect fixes itself over time, rather than subject her to the surgery prematurely. If she needs to have the surgery, it will have to happen before her fourth birthday.
Ema’s case, as Dr. Atilio puts it, is “proof of what medicine is like in Venezuela today. Doctors have lost their ability to diagnose.” Care is very basic and very expensive. Her story is one of thousands of people facing health challenges amidst crisis — but not all get the attention and support they need before it’s too late.
For Ema and for others, the right diagnosis and care often means the difference between life and death. Luckily, Ema has HOPE and a team of dedicated nurses and doctors on her side — and a family that will go the distance to reach them.
She’s touched our hearts, and we hope we’ve saved hers.
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