At 28 weeks pregnant with my son, Rayne, I lost all amniotic fluid. Between hospital visits and bedrest, I delivered him at 33 weeks. He spent the next nine weeks in the NICU—three of those weeks he was intubated. We weren’t sure that he was going to make it. At the time, his kidneys weren’t the issue; it was his lungs. His blood pressure was always high.
At three months old, we did a routine follow-up with a nephrologist. After multiple ultrasounds and genetic testing, he was diagnosed with ARPKD at five months old. Our families have no known history of PKD, so this was all new to us. He’s now 16 months old with high blood pressure, but we have our answers, and we’re learning and advocating more every day for him.
Thank you to the PKD Foundation for building a community and network to meet new people and opening opportunities for research and hope for our baby!