By Maggie Wahl – 03/19/2014
a mother’s experience with her MDA care team, told to the Clinical Conference audience in a March 18 session on end-of-life care
“It was late, and she looked tired. She had all her stuff with her, and she had just come from her office in another part of this huge hospital complex, probably about a mile away. Her hand was on the door, and she said she just wanted to stop and see how we were doing before she went home. But she stayed another hour.”
That night was six years ago, and the setting was the pediatric intensive care unit at Columbia University Medical Center in in New York. Dorothy Shuler remembers every detail of the conversation she had that night with nurse practitioner Vanessa Battista, whom she had met at the MDA clinic a few weeks earlier, shortly after her infant son, Owen, was diagnosed with type 1 spinal muscular atrophy.
Vanessa had tried calling Dorothy at home to see if she felt like talking, but Dorothy had said she didn’t want to talk; she only wanted to hold her new baby, who probably did not have long to live.
Now Owen was in the hospital, unable to breathe without continuous ventilatory support. The doctors in the pediatric intensive care unit were encouraging a tracheostomy and invasive ventilation, but Dorothy and her husband were against it.
“We called it the ‘T word,’ Dorothy remembers. “Thinking of putting a hole in his throat was too much to think about.”
But Owen wasn’t doing well. At home he had been on the BiPAP (a noninvasive ventilation device) at night and for naps. Now they were trying to get him off the BiPAP but couldn’t. “I wanted to discuss the tracheostomy with Vanessa,” Dorothy told the audience. “We talked for an hour, and I still to this day don’t know what her opinion was on the trach. She didn’t try to influence us; she informed us about our options, which is a very difficult thing.”
After the talk with Vanessa, the Shulers felt confident that the decision not to do the trach was the right one. Owen, Vanessa says, “might have stuck around a little longer, but it would have been a selfish decision on our part. I felt as a parent it would have been selfish. We had seen enough – having his head shaved for IV access, planning surgery to put in a gastrostomy tube, watching them do the deep suctioning of his airways.”
Owen died soon after that night, but Dorothy says she doesn’t regret her decision. Since then, the Shulers have had two healthy children who know they “have a brother in heaven.”
What she remembers as positive from that hellish time six years ago was the kindness, compassion and knowledge displayed by her MDA clinic team, from the very first day – a long one, she recalls, but better than she had expected. “We met with a team of neurologists, a pulmomologist, a nurse practitioner and a genetic counselor, and we learned a lot. The diagnosis didn’t change, but it was comforting to be around people that could help us and help Owen.”
Unlike some of the other professionals the Shulers met in their short time with Owen, the MDA clinic doctors didn’t look at their baby as a “terrible disease” and didn’t dismiss him as hopeless. She remembers what two neurologists at CUMC did when they met the family for the first time: they told her how cute Owen was and talked about the tools they had available to help him.
Dorothy recalls that they were medical professionals who had a “sense of empathy and compassion,” chatting with her about the beach, the Yankees, playing with Owen and his Grover doll. “Having a team that was educated about the disease was very helpful,” Dorothy says. “There was no cure, but the type of care they were able to give was huge, and I’m grateful for that.”