Houston, We Have A Problem...

Story by Dr. Suzanne Prestwich, Medical Director of the Pediatric Rehabilitation Unit

DanielOne of my favorite movies is “Apollo 13”, a tale of astronauts who experience a near-fatal accident en route to the moon. With the help of mission control in Houston, they ultimately survive a harrowing attempt to return to earth alive. For them, failure was not an option. 

For most of 2009, Daniel was a typical 13-year-old boy who enjoyed hanging out with his twin brother and loved playing with LEGOs. But that Fall, he caught H1N1 Influenza and never fully recovered. There was no explanation for why the influenza virus had hit Daniel so hard. He grew very weak, and, unable to eat, he needed a gastrostomy tube to provide the nutrition and calories his body demanded. Severe pain kept him out of school, out of his life, for over a year. His parents desperately wanted help for their bedridden son, who spent most of his time curled up in a fetal position. They saw doctor after doctor in New York, but nothing seemed to help. 

Daniel’s last hope was Kennedy Krieger Institute. And so, in a final attempt to relieve the chronic pain that was ruining his life, he and his family came to Baltimore. 

On a flight to Maryland for his first evaluation at Kennedy Krieger, he had to lie on the floor of the small plane, unable to even sit up because of the pain. Our Pain Clinic team knew that an admission to our Inpatient Rehabilitation Unit was the only way to help Daniel, and they understood that the path ahead wasn’t going to be easy for him. But even so, failure was not an option.

Because Daniel’s condition seemed severe, we had a lot of doubts and questions. How was he going to be able to do anything in therapy? What could we do medically for him? How much can we stretch out his legs? How would Daniel cope with an inpatient admission? What about his parents, brother and sister? 

When Daniel returned to Baltimore a few weeks later to begin his stay with us, I realized that he did not trust doctors anymore. Just one look from me made him gag and vomit. A light touch from his nurse was unbearably painful. And it was impossible for his physical therapist to touch his legs without causing him excruciating pain. Daniel was ultimately examined under anesthesia and casts were placed on his legs to provide the constant stretch that they desperately needed. Unfortunately, the pain of the stretch was unbearable for Daniel. 

When I checked on him after the procedure, I knew we had to get the casts off. Immediately. It was a breakthrough for both Daniel and me when the casts were removed and the first step towards his ability to trust doctors again. 

For the rest of the team, Daniel’s admission required intensive planning and collaboration. His physical therapist and behavioral psychologist had their work cut out for them. There were very hard times working with Daniel. After all, you can imagine what it is like to conduct examinations and therapies that cause physical pain to a child. But we wanted for Daniel what deep down he wanted too: to walk again, to have his life back. 

For us, just like for Daniel and his family, failure was not an option. 

As the months went by, Daniel improved remarkably. He started eating again. He could sit up. He was able to talk to everyone and started to smile again. We had important discussions about the virtues of LEGOs. No longer curled up in a ball, Daniel was becoming his old self–Daniel before influenza, before pain. 

At one point, Daniel and I spoke about how rehabilitation was going. We talked about how much progress he had made and we talked about “Apollo 13”. He had been working so hard but was facing the still overwhelming challenge of walking. Physically he was ready to start taking steps, but mentally he was worried. I encouraged him to keep going; his life was in sight. 

Before he left, Daniel began to walk again. It started as a few small steps, but he did it! The hard work had paid off! And when he flew back to New York, he actually sat up in the plane. To go from fetal position to sitting up and enjoying the view from a plane is amazing. 

I keep Daniel’s cast in my office now. It reminds me that anything is possible, but also that the journey can be tremendously hard. Daniel, his family and our team on the inpatient unit did what seemed unattainable. It doesn’t mean that we always succeed, but our mantra is that failure is not an option, and I think that keeps us going when facing the impossible.

 

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