Oligohydramnios: Florence's Story
Patient Story Highlights
- Florence was diagnosed with a rare condition called Oligohydramnios at 31 weeks pregnant with her son, Fernando.
- After being born at 32 weeks in Guatemala, Fernando was flown to John Hopkins All Children's Hospital for the best chance of survival.
- Having access to the International Patient Services program gave Florence and her family comfort knowing they had the option of high-quality care for their son.
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. He had renal failure and a hypoplastic kidney.
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 sees a nephrologist in Guatemala as Johns Hopkins All Children's continues to monitor him.
The Benefits of International Medicine
For families with a condition like Fernando faced, having access to the Johns Hopkins All Children's International Patient Services program can be a great benefit.
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.
The hospital 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. 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 offered at the hospital.
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.”
International Medicine at Johns Hopkins All Children's Hospital
Parents, no matter where they are in the world, want the best for their children. We know it can be stressful to have a child who needs expert medical care, and we’re here to help. The International Patient Services Program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, provides a one-of-a-kind medical concierge experience.