Pierre Robin Sequence (PRS), named after French dental surgeon Pierre Robin (1867-1950) is a rare birth defect that affects the head and face, and can show as a small lower jaw, a tongue that is placed further back than normal, and blockage of the airways. The condition leaves many children unable to breathe or swallow, a scary prospect for patients and loved ones alike.
When Kirsten Morrise was born, she was purple in color and seemed to be struggling with each breath. A Resident Doctor came into the nursery to check on her a few hours after her birth and commented, “Do clefts run in your family?” which caused a nurse to quickly snatch Kirsten away from his arms and take her to the NICU. This was Lisa’s first indication that something was wrong.
Looking back, it seems likely that the two (2) hours Kirsten was lacking oxygen may have caused her many life-long health problems, including epilepsy, neurological issues, mental health issues, learning disabilities and cerebral palsy. Lisa is forever thankful to that fast-acting nurse, whose rush to the NICU saved Kirsten’s life.
Despite many health challenges, Kirsten was and is a fighter. She often required extreme intervention, having 16 hospitalizations during her first year of life alone. Growing up, Lisa and her family tried to live as “normal” a life as possible, but had to go through a constant stream of appointments, therapies, surgeries and more. To date, Kirsten has endured 45 surgeries in her 24 years.
Lisa and Kirsten’s story has helped generate The Rainbow Kids palliative care program at Primary Children’s, developed better outpatient lab processes, such as limiting “pokes” for blood draws, and taught nurses what matters to children and youth. Lisa has become a national advocate and works with the National Partnership for Patients advocating for the patient’s voice.
Kirsten, who now identifies as binary gender and prefers the name Skyllar, is currently attending Utah State working on a degree in Social Work.
Skyllar and Lisa hope that by continuing to share their powerful experience with as many people as possible, they will decrease the number of babies born with PRS. “We both hope that our story and that of all our patient and caregiver colleagues lead to improved outcomes for many others.”
We at PVI wish Lisa, Skyllar, and their family all good things, and we thank them for sharing the story of their struggles, hardships, and triumphs. For those who are interested, you can learn more about the causes of Pierre Robin Sequence by visiting the Seattle Children’s Hospital website.