Renal Anhydramnios Fetal Therapy trial helps save life at Johns Hopkins NICU Center

All month long, the team at Johns Hopkins Hospital has been shining a light on its tiniest patients in recognition of National Neonatal Intensive Care Unit Awareness Month.

For families, the NICU can be a place of both fear and miracles for babies born early or facing complex needs.

First-time parents Zack and Sara love cherishing every moment with their baby Levi, because his journey coming into the world was anything but easy.

"We had just gotten back from Iceland, moved into our house, and had our anatomy scan up in Hanover, Pennsylvania," said Sara Smith, Levi's mom.

The Smith family was given a Johns Hopkins Hospital clinical trial known as the Renal Anhydramnios Fetal Therapy trial, or RAFT.  

Sara's diagnosis

At 20 weeks pregnant, Sara Smith said that the scan showed her a devastating diagnosis, a blockage in her unborn baby's urinary tract, preventing him from receiving amniotic fluid.

Smith said that during her doctor's visit, she was given two options.

"They pretty much said we can continue to carry him and know that he is not going to survive, or we could terminate him because he wasn't going to survive, and we were OK with that," Smith said.

Her hunt for a cure

So, Smith explored a third option, giving RAFT a chance.

"Which involves replacing the amniotic fluid with a solution in order to help support lung growth during the pregnancy so that babies can breathe," said Jena Miller, the Associate professor at Johns Hopkins Center for Fetal Therapy.

Keeping faith first

"It was scary, but we were willing to try anything to help him get here," Smith said.

Sara and Zack said that despite not knowing how the process would turn out, her family leaned on faith.  

"We were confident this was God's plan, and we were thankful that we were moving forward with the pregnancy," said Zack Smith.

The trial breakthrough 

In August 2024, Levi was born with lungs of a lion, and the treatment was successful. Smith was one of 55 patients nationwide who participated in RAFT.

While the trial is no longer offered, Johns Hopkins Hospital doctors said its NICU center is a place that handles hundreds of precious preemies with complex needs.

"We take care of over 800 to 900 babies per year," said Jacqueline Gallup, Johns Hopkins Children's Center Neonatologist.

For mothers experiencing moments similar to Smith's, she says, "You're stronger than you think you are." 

For pregnant mothers, Johns Hopkins offers treatments as a part of the next phase of its research.

Smith is also expecting her second child next year.