Lyndsey’s Story: Navigating Pediatric Kidney Disease

Meet Lyndsey and James

When Lyndsey learned she was pregnant with her fourth child, her family was overjoyed. But halfway through her pregnancy, everything changed when doctors discovered James’ kidneys were in distress. What followed was a journey marked by uncertainty, resilience, dialysis, transplant, and finding hope through community.

The Beginning

At the 20-week anatomy scan, Lyndsey learned James’ kidneys showed hydronephrosis, and her amniotic fluid levels were critically low. By 25 weeks, his kidneys were undetectable with little blood flow, and fetal intervention was no longer possible.

The weeks leading up to birth were filled with fear and uncertainty.

James arrived two weeks early and immediately faced life-threatening complications, including underdeveloped lungs and kidney failure.

The Challenge

At only five days old, James underwent surgery to place a dialysis catheter. Complications followed, including bowel perforation, months in the PICU, CRRT treatment, infections, and learning how to manage dialysis at home.

Lyndsey and her husband committed themselves to becoming experts in their son’s care.

“We made it our mission to educate ourselves, advocate for him, and give him the best quality of life possible,” said Lyndsey.

Finding a kidney donor brought another challenge.

Then hope arrived.

James’ aunt was a perfect match.

Finding Strength

James received his kidney transplant, transforming his quality of life.

“He can now swim, has endless energy, and is an incredibly happy child,” says Lyndsey.

Even after transplant, challenges continued. One year later, James experienced antibody mediated rejection requiring hospitalization and intensive treatments.

Wanting to better understand transplant outcomes and support other families, Lyndsey began searching for resources.

That search led her to IROC Family Partners.

Through IROC, Lyndsey found education, research opportunities, and a community that understood exactly what her family was experiencing.

Today

Today, Lyndsey continues advocating not only for James, but for pediatric kidney patients everywhere.

She remains deeply connected to IROC Family Partners because of its mission to ensure families have support, education, and connection.

“Families need this support now more than ever,” said Lyndsey.

Their Message

“Research gives me hope for James’ future. I want to watch him grow through every stage of life, and I know his life would not be possible without the research and medical advancements made over the last 20+ years.”

“No family should walk this journey alone.”