In April 2015, we (Elizabeth and Scott Stephens) gave birth to a healthy nine-pound baby boy named Gus. He was a joyful addition to our family and his big sister, Lucy. But in August 2015, after months of growing, thriving and hitting milestones, Gus became lethargic and weak. We noticed at his wellness visit that he had lost one pound, which alarmed his doctors. We immediately tested Gus for Cystic Fibrosis and were relieved to find the result negative.
However, on the evening of September 23, 2015, Gus stopped breathing. We caught it early and rushed him to the ER, giving him CPR on the way. The ER staff put him on a ventilator, and he started breathing right away. Doctors were perplexed by Gus’ sudden respiratory failure, combined with his recent muscle weakness and low muscle tone. They threw around diagnoses like Duchenne, Spinal Muscular Atrophy, Pompe…diseases that were chronic or terminal. Our minds traveled to places where long-term chronic care, hospital stays and the potential passing of our son were all a part of our future.
We didn’t give up on our Gus. We stayed in the hospital for three weeks while doctors, still puzzled, tried to figure out what was wrong with our son. They ran test after test, poke after poke and round after round of medicine; Gus only worsened. His organs started to shut down. When the doctors scanned his heart, they were shocked to see it had more than doubled in size over a two-week span. Gus and we were immediately put on a life flight to Texas Children’s Hospital in Houston — one of the best children’s hospitals in the world — to see if they could figure out what was happening to our son.
The doctors at TCH were just as baffled. Gus looked healthy; he was awake and alert. And yet, his little body was giving out on him. We decided to undergo genetic testing to see if it could shed some light on Gus’ illness.
The results came back one week later. We were called into a conference room by Gus’ team of doctors to be gently given the words no parents want to hear, “What Gus has is a rare genetic condition, so rare that there are only two other known, documented cases. It is fatal in boys. We are so sorry and will give you time to think about what to do next.”
We were shocked, devastated, in total despair. Nothing could be done for our little Gus. Nothing. After all the hope, the ups and the downs and the belief that he would be okay, we found he would not survive being taken off a ventilator.
In those first few moments of post-diagnosis, Scott and I chose to take Gus off the machine keeping him alive. We waited a few days for family to arrive but knew that letting him pass peacefully from this life to the next was the right thing to do. No more needles, no more tests, no more times of holding him close to us. Jesus would have to hold him for us now.
Only a few short months after our tragedy, Scott and I decided no other family should have to say goodbye to their children in a hospital room. But with life-limiting illnesses, like the one our Gus had, parents might not have a choice about leaving the hospital. We worked within that constraint, dedicating ourselves to creating in-hospital spaces that felt like home. Scott and I called the spaces “Butterfly Bereavement Rooms,” words that call to the joyful fragility of life, as well as hope and comfort.
For the rest of 2015, we worked steadfastly on the rooms at any children’s hospital in San Antonio that wanted one. But we weren’t done yet. Our idea grew into developing a state of the art Pediatric Palliative Care program at The Children’s Hospital of San Antonio, the city’s (and region’s) only freestanding children’s hospital.
We desired to create a program that offered emotional, physical and mental support to children who were coping and living with chronic and terminal illness and their families, a program that helped them walk the journey of their “new normal.” We did so, knowing that if Gus had lived even a few months or years longer, palliative care would have been a major part of our family. We would have relied on top-of-the-line, collaborative care, professional emotional support and a pediatric palliative care program that understood our need to thrive in this life.
As the Gus Owen Stephens Foundation, we support children, families and medical professionals in pediatric palliative care in memory of our son, Gus.
Effective pediatric palliative care begins when a life-limiting illness is diagnosed in a child. Such care requires a broad multidisciplinary approach and involves the family, medical center and local, supportive resources. When you invest in palliative care, you leave nothing out, making a difference in the lives of families and their children. Join us in our mission for better palliative care across Central Texas.