There are stories that I’ve covered that will remain with me always. Stories of battles fought and won. Stories about cancer, 9/11 and poverty. People who have opened their doors and their lives and let me in. It’s a gift each one has given me, and I’m so grateful.
This is a blog for and about parents and families, and this is a story about a set of local parents and their child. But this post is different. Formulating my words, I feel something akin to a weight — an obligation to honor this family and their willingness to open up and let me take notes.
What makes this story unique is the number of people who have been following it. Locals and people on the other side of the world — men, women, children, parents and the childless – all touched by a life well-lived.
It begins and ends with him.
Jeff and Alissa Vatter of Indio had only been married a few months when they learned they were expecting their first child. Their excitement turned to worry when a routine ultrasound and subsequent blood work revealed markers for Down syndrome. However, further testing eventually ruled it out.
Jeff and Alissa’s relief was short-lived when they learned later that their son, who they named Owen, had a rare congenital heart defect known as Truncus Arteriosus.
Owen’s aorta and pulmonary artery were fused together, which meant that, outside the womb, his body wouldn’t get enough oxygen. His heart also had a hole in it, and his doctors discovered that Owen had Neuroblastoma, a childhood cancer. Eventually, he would be diagnosed with Total Anomalous Pulmonary Venous Return, or TAPVR. With TAPVR, the pulmonary veins that should connect directly to the heart’s left atrium connect instead to other veins.
Owen’s fetal cardiologist said that it is so rare to have a diagnoses of Truncus Arteriosus, TAPVR and Neuroblastoma that there are no known cases, Alissa said.
Alissa was induced one week before her due date, and because he crashed during labor, Owen was born via emergency C-section. He was born not breathing.
Owen had open-heart surgery immediately.
The four months that followed were a roller coaster for Jeff, Alissa and their son. After being intubated for 57 days, Owen was finally able to breathe on his own. Jeff and Alissa thought they’d be able to take their son home.
But Owen developed a complication, Pulmonary Vein Stenosis — a scarring of the veins — and had his second open heart surgery when he was 2 months old.
Eventually, Owen’s veins began to re-scar. Out of options, his doctors gave him six months to live.
Jeff and Alissa made plans to take him home. They looked forward to spending the short time experiencing everything with him they could — marking a lifetime of milestones in just six months.
Days later, on Sept. 3, Owen’s doctors told Jeff and Alissa that their son was worsening and had one month left.
The following day, the young parents held their son as he quietly slipped away.
“At 5:05 p.m. our precious lion heart gained his angel wings,” Alissa wrote on Sept. 4 on LionHeartOwen.com, the blog and website created to update people about Owen’s diagnoses and treatments.
Owen’s medical conditions — the treatments and setbacks — those are all a part of his journey, but his story transcends all of that.
Too young to speak, too sick to leave the hospital, Owen reached thousands. His story circumvented the globe. His smile was contagious.
His story continues.
Currently, Owen’s Facebook page has more than 4,000 “likes” and has been shared with more than 70,000 people. LionHeartOwen.com has been visited by people in 60 countries, including Lebanon.
“We received a message from Lebanon that there are people there who have been inspired to love one another more,” Alissa said. “That’s what Owen’s story is. He smiled through the darkest things and his smile lit up the world. Our child inspired others.”
Jeff and Alissa lean on their faith and their belief that one day they’ll see their son again, Alissa said.
The couple, along with 400 friends and relatives, celebrated Owen’s life on Saturday. Alissa read a letter from their son to those in attendance.
Fitting, since the young mom said she and her husband spent their four-month hospital stay advocating for their son and “being his voice.”
What’s next for the parents?
They’re working hard to launch the Lion Heart Owen Foundation, a nonprofit that will bring awareness to blood and organ donation, congenital heart defects and childhood cancers. Part of the foundation’s aim is to bring hope and joy to families in similar situations, Alissa said.
“We’re praying, asking God to give us clarity and discovering what the new normal is for us,” Alissa said.
What does she want others to take away from Owen’s story?
“Live each day like it’s your last,” she said. “It’s but a blink. Find joy in everything.”