A Life RAFT for Levi
At 20 weeks pregnant, Sarah Smith of Hanover, Pennsylvania, was given two options: abort her pregnancy or continue carrying her child while knowing he likely wouldn’t survive. During what was supposed to be the most exciting time of their lives, Sarah and her husband, Zack, instead were hoping for a miracle.
They decided to look for a third option, and found it at Johns Hopkins Medicine.
Sarah was diagnosed with early pregnancy renal anhydramnios (EPRA), a condition in which a pregnant woman does not have amniotic fluid around her baby. By 16 weeks of pregnancy, 90% of amniotic fluid is made from the baby’s urine. EPRA occurs when the baby’s kidneys, ureters, bladder or urethra fail to develop properly, interfering with the baby’s ability to make or pass urine. This prevents the lungs from developing, leading to death after birth due to respiratory failure.
Then the Smiths heard about the Renal Anhydramnios Fetal Therapy (RAFT) clinical trial. In the trial, mothers got repeated injections of fluid (amnioinfusions) with the goal of reversing the effects of ERPA long enough for their babies to be delivered with functioning lungs.
Sarah and Zack made multiple trips from Pennsylvania to Maryland for these injections. They eventually moved to Baltimore to be closer to The Johns Hopkins Hospital for care. The treatment was successful, and Levi was born in August 2024 with lungs that worked.
“It was an overwhelming feeling of relief but also worry because I knew there was still a long road ahead of us,” says Sarah. “But I know he wouldn’t be here without the trial.”
“Levi is alive today because of the amnioinfusions,” says pediatric nephrologist Meredith Atkinson, co-lead of the RAFT study. She met the Smiths when Sarah was around 24 weeks pregnant and continued working with the family for the four months that Levi was in the neonatal intensive care unit after he was born.
Levi is now a year old, and Sarah describes him as fun, happy and calm. He still has challenges — he needs dialysis every night, and will eventually require a kidney transplant. Levi has routine visits with his pediatric nephrologist, Alicia Neu, among other physicians at Johns Hopkins Children’s Center.
“It’s all worth it to have him here with us,” says Sarah.
Pediatric Lupus and the RAFT Trial
Pediatric nephrologist Meredith Atkinson discusses her research on lupus kidney disease in children and the Renal Anhydramnios Fetal Therapy (RAFT) trial. Pediatric-onset lupus is associated with higher rates of lupus kidney disease (lupus nephritis). This is a rare disease, which makes conducting clinical trials difficult. However, the research team is working with PEDSnet, a pediatric health care data learning system. Johns Hopkins is also leading the RAFT trial, which includes a study team with neonatologists, maternal and fetal surgeons, pediatric surgeons and pediatric nephrologists.
