The day Owen Armstrong came home from the hospital, his family lined the street holding posters declaring their love for him.
That day, Owen got to feel fresh air on his face for the first time. He got to touch grass and the cold, wet noses of his dogs. He got to taste the sweetness of a cherry sucker.
Then, while his pastor prayed and his family sang lullabies, Owen took his last breath.
"I held Owen, and Bill held me," says Owen's mom, Cathy.
Her son was just five months old. Those five precious months were made possible by a small army of people at Mayo Clinic.
"Words can't express my gratitude to all of the teams who cared for Owen and who cared for me while I was pregnant with him," says Cathy Armstrong, a lead administrative assistant in Occupational Health Services.
"Because of them, I got to give birth to Owen. I got to experience him and hold him. I don't think I could have made it without them. They truly live Mayo's values and I want them to know how much I thank God for them still to this day," Cathy says.
"The care Owen and I received makes me want to live out Mayo's values and go above and beyond for anyone who needs it," she says. "I want to show that same care, compassion, excellence and kindness to everyone I work with and support."
Cathy and her husband, Bill Armstrong, a senior IT specialist in the Special Purpose Processor Development Group, learned something was wrong with their son at Cathy's 12-week ultrasound.
"His bladder was two times the size of his body," Cathy says. "They thought he most likely had prune belly syndrome."
Children with this rare condition, also known as Eagle-Barrett syndrome, have weak or absent abdominal muscles, and have kidney and bladder problems. Those problems can range from mild to severe. Some children born with prune belly syndrome lead relatively normal lives. Some have additional congenital disabilities. Severe cases may result in stillbirth, kidney failure or death.
"As soon as we found out about the defect, Mayo's amazing Maternal Fetal Medicine team swooped into action," Cathy says. "They told us all of the possibilities, good and bad."
They also told the couple their child would be a boy.
"We decided to name him Owen because it means 'little warrior,'" Cathy says. "And he was."
Cathy began having weekly appointments with a team led by Rodrigo Ruano, M.D., Ph.D., then head of Mayo's Division of Maternal Fetal Medicine. At one of those appointments, Dr. Ruano told Cathy and Bill that Owen might not make it to birth. To have a chance to survive, he'd need to have a shunt placed to drain his bladder. Cathy would need to be awake so she could make decisions about Owen's care if there were issues during the procedure.
"I wanted to do everything I could to give him a fighting chance," she says. "He ended up having three of those procedures before he was born. I would do it a million times over again if I needed to."
In addition to meeting with providers from Maternal Fetal Medicine, Cathy and Bill began meeting with the teams that would care for Owen after his birth.
"We met with the NICU team, the ComPASS Care Team, and all the specialty care areas that Dr. Ruano thought might be part of Owen's care after he was born," Cathy says. "The ComPASS team (Mayo's pediatric palliative care team) helped by letting Bill and I talk out our goals for Owen, and our wishes and dreams for his life. They let us know that if ever those things weren't possible, they would talk through those hard things with us."
Owen Lynn Rodrigo Armstrong — Rodrigo after Dr. Ruano — was born via cesarean section on Dec. 23, 2019.
"He was so sick," Cathy says. "He had his first surgery on the second day of his life."
Six more surgeries would follow.
"Owen had stage IV chronic kidney disease," Cathy says. "The goal was to get him healthy enough for a kidney transplant."
A devoted team worked tirelessly to get Owen to that place while supporting the family that loved him.
"The nurses, doctors, nurse practitioners, respiratory therapists, physical therapists, music therapists, lab team and Child Life staff did all they could for him and for us," Cathy says. "They celebrated the victories and were sad with us during the hard times. Everyone was so thoughtful, kind, compassionate, empathetic and caring."
They celebrated the victories and were sad with us during the hard times. Everyone was so thoughtful, kind, compassionate, empathetic and caring.Cathy Armstrong
That caring also came from people not directly involved in Owen's care.
"Every role matters at Mayo," Cathy says. "Every day, someone from housekeeping would come in to make sure Owen's room was clean. They always had smiles on their faces. We would have small talk, and I could tell they took pride in keeping the rooms clean for patients. The staff who checked parents into the NICU and PICU really got to know us and would ask how Owen was doing, how our older son Kayden was doing, how I was doing. They asked about our dogs and just life in general. They made us feel loved and like we really mattered to them, and that made me feel even more comfortable with Owen being in the hospital."
By late May, Owen was having more bad days than good. His Beads of Courage — a collection of small beads earned for things like blood draws, tests and procedures — had grown to nearly 44 feet. Doctors told Bill and Cathy that Owen would be unlikely to qualify for the kidney transplant he'd need to survive.
"The ComPASS team sat down with us and talked through these hard things," Cathy says. "We didn't want him to exist on dialysis. We didn't want him to spend his whole life in the hospital. We decided not to make Owen suffer anymore and to take him off life support. We picked a day to do it, and the ComPASS team asked us if we wanted it to be at home, and we did."
While the ComPASS team made arrangements for an ambulance and care team to transport Owen home, Child Life staff worked with the Armstrongs to create keepsakes of their son's short life.
"Child Life made sure we got handprints and other mementos to remember Owen by," Cathy says. "The team arranged for Gentle Wings to come and take photos of our family — the first and only time our son Kayden got to meet Owen. The care team made sure we had space and time with Owen. They showed us such compassion and love."
On May 30, 2020, Owen got ready to go home.
"Thomas Koppelman, an amazing respiratory therapist, took us on a parade around the NICU and PICU for the nurses and staff to say goodbye to Owen," Cathy says. "That meant the world."
Thomas Koppelman, an amazing respiratory therapist, took us on a parade around the NICU and PICU for the nurses and staff to say goodbye to Owen. That meant the world.Cathy Armstrong
After the farewell parade, an ambulance carried Owen to his home, where family members were waiting to meet him and say their goodbyes.
"All of his aunts and uncles were there, his grandmas, my father, our pastor, the hospice team, Thomas and a nurse," Cathy says. "My mom let him taste a cherry Dum-Dum sucker. I rubbed grass on his fingers and feet. We let him feel the breeze. We sang, we cried and when it was time, they plugged his trach, and Owen died in my arms."
When a funeral home came to collect Owen's body, Cathy carried him out surrounded by family.
"That was so hard," she says. "When they drove away, I almost collapsed."
Then, Cathy felt compelled to turn around. When she did, she saw three hot air balloons flying over her house.
Those balloons would become an important source of comfort in the days ahead.
After Owen's death, Cathy and Bill went through the devastating motions of saying goodbye. There was a wake in Elkader, Iowa, where they used to live; a funeral in Prairie du Chien, Wisconsin, Cathy's hometown; and a tree-planting service at their church in Rochester.
"Dr. Ruano came to the tree planting and so did some of the surgeons I supported when I worked in cardiovascular surgery," Cathy says.
Deep in her grief, Cathy found solace in thinking about the balloons that flew over her home after Owen's passing. She began to imagine one of them carrying her boy to heaven.
"Bill and I got matching hot air balloon tattoos in honor of Owen," says Cathy.
She also wrote and illustrated a book, "Owen's Journey Home," about her son's journey to heaven.
The description on the back of the book reads, in part: "Join Owen on his unique adventure, where Jesus shows him God's wonders, before he is brought to his heavenly home, full of love, beauty, and his relatives who met God before him."
Cathy shared the book with the Maternal and Fetal Medicine team that had cared for her. One of the ultrasound technologists recognized the balloons featured and knew the man who piloted them. He reached out to the pilot and shared the Armstrongs' story.
That led to an invitation.
"Bill and I got to go on a hot air balloon ride over Rochester," Cathy says. "We rode in the hot air balloon we based our tattoos on. It was magical."
Since Owen's passing, Cathy and Bill have continued to honor his life. They host a fundraiser each year to raise money for scholarships in Owen's name at each of their high schools. And each "angelversary" — the day Owen passed away — they donate 50 Build-A-Bear kits to Mayo Clinic.
They've also welcomed a new family member: Eden, who arrived on Dec. 17, 2021.
The Maternal Fetal Medicine team took me on during my pregnancy with Eden to make sure I felt supported and that I was with a team that knew what my family had been through.Cathy Armstrong
"The Maternal Fetal Medicine team took me on during my pregnancy with Eden to make sure I felt supported and that I was with a team that knew what my family had been through," Cathy says. "They didn't have to do that."
That type of gesture makes Mayo Clinic "more than just a place of work for me," Cathy says.
"The people I encountered through this journey have shown what it means to be a Mayo employee," she says. "The needs of the patient come first, even when that patient wasn't born yet or was on his little deathbed. The staff are what makes Mayo amazing."
Tags: Child LIfe Program, ComPASS Program, Dr. Rodrigo Ruano, Mayo Clinic in Rochester, NICU, Patient Stories, Staff Stories