Inside Pediatrics Spring/Summer 2024

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and potential extended NICU stay, all five families opted for full medical support. Clear communication, counseling and informed decision making were instrumental when families made medical decisions about their baby’s care. The successful outcomes of neonates with congenital kidney failure undergoing ECMO challenge previous assumptions of nonviability. Meticulous ECMO, respiratory, nutritional and kidney support therapies are essential to favorable long-term results. Further investigation is needed to define the optimal strategies to improve outcomes

Four of the five patients survived and are thriving today. Pulmonary hypertension resolved in each survivor, with three requiring no oxygen support and one needing only nocturnal oxygen. Three survivors underwent successful kidney transplants, while one awaits transplant evaluation. This challenges the traditional notion of reflexively assigning nonviability to neonates with congenital kidney failure and severe pulmonary complications. This research highlights the significance of ECMO and kidney support therapy in mitigating the adverse effects of pulmonary edema, uremia and electrolyte complications. The use of a filter through the ECMO circuit—to perform continuous venovenous hemodialysis (CVVHD), continuous venovenous hemofiltration (CVVH) with the Aquadex machine, peritoneal dialysis and intermittent hemodialysis— showcases the synergism and need for different approaches to manage these complex cases. Managing congenital kidney failure requires a multidisciplinary approach involving neonatology, nephrology, surgery and multiple ancillary divisions. “As healthcare providers, we all bring something to

in severe congenital kidney disease cases. “We want to share this information with other programs to let them know that these kids have a chance at life; what we learned in this very small cohort is that these lungs can develop

Kara Short, MSN, CRNP, CPNP-PC

and grow if given a chance,” Short said.

the table,” Askenazi said. “The families need clear, concise information so they can understand their options when making treatment decisions. Our job is to develop programs, systems and plans to help those kids have the best chance at life.”

“When thinking about the future, we’re asking ourselves: How can we get the very best technology to care for these babies? How can we help other programs improve so they can better care for their kids? How do we ensure that families are counseled with all viable options in an honest and comprehensive way?” Askenazi said. “We will continue to make progress. We have recently received a grant from the National Institutes of Health (NIH) to partner with industry to make a better device for neonates. We recognize that we must continue to educate our colleagues across the U.S. and the world about what we have learned from these miracle babies.” ●

David Askenazi, M.D., MSPH

The families of the neonates faced challenging decisions, including the choice of full medical support or palliative care. Despite the complexity

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