Posted on Nov 28,2017
It’s an unfamiliar word to most. As a diagnosis for a pregnant mom, it’s terrifying.
For Florence, a regular visit to her obstetrician in Guatemala City for an ultrasound at 31 weeks brought a diagnosis that changed everything. Oligohydramnios, pronounced ah-ligo-hi-dram-nee-os, is diagnosed in about 4 percent of pregnancies when the woman has a low level of amniotic fluid, which protects the fetus and aids the development of muscles, limbs, lungs and the digestive system. The condition can result in preterm birth and other complications.
Her son, Fernando, was born at 32 weeks in April 2016 in Guatemala.
“Fernando had renal failure and a hypoplastic kidney,” explains Roberto Sosa, M.D., director of the International Medicine Program at Johns Hopkins All Children’s Hospital.
Decisions needed to be made quickly. Florence’s neonatologist recommended transferring Fernando by air ambulance led by the Johns Hopkins All Children’s LifeLine critical care transport team to the St. Petersburg, Florida, hospital for the best chance of saving his life. The hospital’s neonatal intensive care unit earned the highest rating, Level IV, from the American Academy for Pediatrics and specializes in the most critical care.
“Johns Hopkins All Children’s has the resources, through multiple disciplines working in concert, to offer children such as Fernando a fighting chance,” explains Aaron Germain, M.D., the neonatologist who cared for Fernando upon arrival. “Without the critical care provided here, Fernando would have been unlikely to survive.
“Fernando’s success also was driven by his family’s dedication.”
Fernando arrived weighing less than 4 pounds, requiring mechanical ventilation for respiratory support, and on blood pressure support, Germain says. A peritoneal dialysis catheter had been inserted at the referring hospital in an effort to offset his lack of kidney function. Things were critical.
“It was a roller coaster, but we knew we were in good hands and had a great NICU team taking care of our baby,” Florence recalls. “My husband, Emilio, traveled with Fernando and the transport team. He was very nervous for his son, but they were amazing.”
The team arrived in the middle of the night and got to work immediately.
“We knew it was the right place, and we felt safe,” says Florence, who had to fly separately.
Florence wanted to protect Juan Diego, her older son, until Fernando was healthy enough for them to meet, so Juan Diego enjoyed playing, while being kept blissfully unaware of the dramatic efforts to save Fernando.
When Juan Diego finally got to meet his fragile baby brother a week after his arrival, he decided Fernando looked like a teddy bear despite the intimidating machines and wires keeping him alive.
Things were starting to look up.
Fernando spent 55 days in the NICU and two months as an outpatient in St. Petersburg while the family stayed in one of three on-campus Ronald McDonald Houses.
“We are now back in Guatemala, and we go back to Johns Hopkins All Children’s every six months for follow up,” Florence explains. “His kidneys are currently very stable, and he is a very happy baby.”
“Fernando has a great nephrologist in Guatemala, and we are in communication and monitoring him closely should he get to the point of needing a kidney transplant,” Sosa says.
The Benefits of International Medicine
“For families with a condition like Fernando faced, having access to one of the world’s top-name hospitals just a few hours from home is a great benefit,” Sosa explains.
The Johns Hopkins All Children’s International Program is expanding as word spreads beyond physician referrals to families such as Fernando’s, who recommend the hospital to friends and neighbors.
“This is a comprehensive program that is focusing on Latin America and the Caribbean and growing,” Sosa explains. “We are attending conferences, training physicians through observership programs, and we just received a grant to train 10 to 12 nurses from Guatemala beginning next year. We are providing our services to countries in the Central America and Caribbean regions.”
“We are creating ongoing relationships in these countries so that we can serve children,” adds Sosa, who recently returned from a neonatal-perinatal conference in Guatemala. “Some of these kids are very sick, others want a consultation or a second opinion.”
Sosa has formed a relationship with the Universidad Francisco Marroquin School of Nutrition in Guatemala through which several students train at Johns Hopkins All Children’s each year.
“Five or six physicians also come from El Salvador and Guatemala to rotate through certain specialties each year,” he says. These physicians return to their own countries to practice, but they carry the word of Johns Hopkins All Children’s with them, broadening knowledge of the highest levels of care we offer.
The international program is giving parents like Florence with high-risk pregnancies and high acuity babies, great comfort in knowing they have the option of high-quality care at Johns Hopkins All Children’s, just an air ambulance ride away.
“The idea of going to another country was scary,” Florence says, “but having the option to transfer Fernando to Johns Hopkins All Children’s through the International Program was the best choice for us.”
This story originally appeared in For The Kids, a magazine published by the Johns Hopkins All Children's Foundation. Visit hopkinsallchildrens.org/international to learn more about the International Medicine Program at Johns Hopkins All Children’s Hospital.