River Lynn Nelson was born with a rare disease and never made it home from the hospital. Now her parents, Bethlehem residents Carlee and Aaron Nelson, are working to increase awareness of both River’s congenital disorder and the foundation that helps families facing the same challenge.

Congenital diaphragmatic hernia is a disorder occurring while a baby is developing in utero. When this disease strikes a preborn child, a gap in the diaphragm permits abdominal organs to migrate or expand beyond their appropriate anatomical space, crowding the lungs and hampering lung development. It is estimated to occur in one of every 3,000 live births worldwide, making it a rare disease (defined as one in 1,500 people by the Rare Diseases Act of 2002).

Carlee and Aaron were caught off guard by the prenatal diagnosis of CDH, and by the prognosis: depending on comorbidities, the survival rate can be 50 percent or lower.

“I was given the option to abort River,” Carlee said, “but I felt like that was giving up, and I [...] wanted to leave this up to River. If she wanted to fight, she and I would do everything in my power to support that.”

River was diagnosed with hydrops fetalis (abnormal fluid buildup) at 33 weeks’ gestation, so Carlee was put on in-hospital bed rest and eventually had an emergency C-section at Children’s Hospital of Philadelphia.

“Five doctors and some residents sat in my room and told me that they have never seen a case like River’s at CHOP,” Carlee recalled. After being delivered, River was placed on extracorporeal membrane oxygenation, but died after 15 hours.

“I held my daughter for the first and last time,” Carlee said. “I wish I could have frozen time.”

Now Carlee and Aaron are helping other families by raising awareness of this disorder, which is about half as common as spina bifida (seven in 10,000 live births) but is far less commonly known. During her pregnancy, Carlee found help from CDH International and hopes this group will receive financial support to help other families who find themselves in her situation.

“I had no idea what CDH was, but CDH International were some of the first to reach out to me [ ...] and connect me with resources.”

Carlee and Aaron are devastated by the loss of their child, but are finding significance in keeping her memory alive and being part of outreach efforts to other families facing CDH diagnoses.

“My husband and I don’t have River here physically, but she is always in our hearts,” Carlee said. “We feel close to her by helping others. We always think there may be a greater meaning to everything we have gone through and if we can help one family in need and lighten their pain and troubles it also lightens our grief as well.”

CDH International serves thousands of families affected by CDH across the U.S. and in 74 countries around the world. Families who need help, as well as individuals who would like to make a donation in River’s memory, can find resources at www.CDHI.org.