Published October 15, 2019
Today is National Pregnancy and Infant Loss Remembrance Day. This is a day of support, awareness, and education in honor of those who have suffered a miscarriage, ectopic pregnancy, still birth, or loss of an infant. On this day of remembrance, we honor those who have lost a child to autosomal recessive polycystic kidney disease (ARPKD) and autosomal dominant polycystic kidney disease (ADPKD). The incidence of ARPKD in babies is 1 in 20,000. Thirty percent of those born with ARPKD do not survive the newborn period. The incidence of ADPKD is 1 in every 400 to 1,000 live births.
While the families impacted by ARPKD and ADPKD have only been able to hold their precious child for a short time, their memory and presence will continue to live on. No matter how short their time together may have been, each child leaves a lasting footprint on the lives of all they encounter. Their memory lives on forever with their loved ones and will always hold a special place in their hearts.
A moment in our arms, a lifetime in our heart
We thank the following community members for sharing their stories.
At a 25-week ultrasound, Jen and Pete St. Aubin learned their daughter Sophie was likely the carrier of ARPKD, a life-threatening genetic disorder. After only a few precious hours together, Jen and Pete pledged to honor Sophie’s memory by helping other babies suffering from ARPKD. Learn how Jen and Pete are turning heartbreak into hope.
Kristen and Daniel Krittman arrived at what they expected to be a routine 32-week exam to hear their unborn baby diagnosed with ARPKD. After a brief couple of hours together, Brooke Madeline passed, leaving an indelible mark on Kristen and Daniel. After learning they had a 25% chance of every subsequent pregnancy resulting similarly, Daniel and Kristen embarked on a combination of in vitro fertilization and preimplantation genetic diagnosis, later welcoming Brooke’s older brother Ben and twin sisters Alex and Avery.
In 2009, Marquila Turner lost her first son Cameron to ARPKD. Assured this would not happen again, Marquila worked with a high-risk doctor for her second pregnancy. Things went well until, at a 26-week checkup, Marquila discovered her second son was also diagnosed with ARPDK. Baby Cameron lived just 11 hours. Today, Marquila and her daughter participate in Austin’s Walk for PKD to help others affected by this disease.
Karen Rodas lost her second son to ARPKD. Having never heard of the disease prior to his diagnosis, the family is now all too familiar with it. After a brief 36 hours with Nathaniel, the family makes it a point to remember him daily, asking questions about how he is doing and cherishing how he always watches over his sisters as they play and laugh.
Pregnant with twins, Melissa Justice learned the baby girl twin was a PKD carrier. After less than three months, Abigail took her last breath. Melissa Justice reflects on the power and the many lessons of love as she remembers her baby girl Abigail.
Telling your story
Some people find sharing their story therapeutic. If you would like to share your story with our community or read more stories like those above, visit Voices of PKD.
On behalf of the PKD Foundation, we send our deepest sympathies to all who have lost their children to ARPKD and ADPKD.