Personal Story: John's Story
note: opinions expressed in the following story are those of the author, and do not represent the views of the New Hampshire Cystic Fibrosis Program.
We were looking forward to a wonderful weekend with our new son. John had been born eighteen hours before and now we were just waiting for the attending physician to come on duty in the morning and sign us out. We were also waiting for John to "pass his meconium," or as the nurses put it 'poop', but we had been assured that it would happen within a few hours. A few hours before sunrise the nurses noticed that his little belly had become distended and residents began stopping by to examine him. Nobody thought it was serious. When the attending arrived she got a much more concerned look on her face and then asked us if we had a family history of cystic fibrosis.
We panicked. We didn't know what CF was but we knew that it wasn't a good thing. We knew they had walks for it, maybe even telethons. We tried to calmly say, "No, not that we know of" to her, but the terror in our voices must have been palpable. She said, "Well then let's not get ahead of ourselves, it could be another type of blockage. Let's take some x-rays and we'll know more about what we are dealing with." The next eighteen hours were spent going between the Neonatal Intensive Care Unit (NICU), radiology, surgery, and a countless number of waiting rooms. We tried to assure ourselves that it was probably something else, something unexpected but ultimately benign.
We waited while John was in surgery, watching the clock and hoping for news. The surgery was running longer than they had expected, not a good sign. When the surgeon came to see us we knew inside what the diagnosis was, even if we did not know what it meant. She told us that John had been full of sticky meconium and explained the procedures that she had done and then told us what we knew, that the blockage was almost assuredly related to CF.
We went to see John back in the intensive care unit. He was tiny. He had IVs and a respirator. The staff told us to go home and we reluctantly did. For the first time in two days we went home, held each other, and cried before falling asleep. The only thing that we had wanted to give each other was a beautiful, healthy baby; but all we had was that image of John lying there, so small, so alone.
We woke up two or three hours later and tried to search the web for info on CF. We weren't sure where to look. We found articles about mucus and chromosomes, about the Human Genome Project and lung transplants. We found memorial pages for children and started crying again. We found a page about a young woman with CF that ran 10K races and tried to have hope.
We drove back to the hospital and went up to see John and talk to the staff that was on during the early morning hours. Over the next day we met many of the doctors, nurses, and technicians who worked at the NICU. We watched John's oxygen rate and pulse oscillate on the different monitors and asked to meet with anyone that could tell us more about CF, about what John's life would be like. We were able to learn more about CF but it was so hard to process what it all meant. Would he ever be able to go to school? Would he be able to go outside and play with other kids?
The next day we woke up early again, went to see John, and then went to get breakfast in the hospital's empty cafeteria before the six o'clock shift began to come in. We drank our coffee until one of the doctors from the NICU came in with his tray and sat down at our table. He sat with us for an hour and talked about being a father. He told us about children and how hard it was to be a parent. He told us to take one day at a time but also that we had the right to hope, the right to imagine John living a full life. He told us not to let John's disease define him, to let it be just one aspect of who he was. He told us to get over the notion that something that was not perfect could not be good. That was the turning point.
John grew stronger and started breathing on his own. We learned about enzymes and physical therapy. We were able to take him for a walk outside and the two of us held him tight as the sun and fresh air touched his face for the first time. We brought him home.
Over the next three years we watched a newborn grow into a little boy who loves to play soccer, flirt with girls, and talk to his grandfather on the phone. He watches Sesame Street while doing physical therapy and then eats pancakes covered in syrup and butter. He carries his enzymes in his Harry Potter lunch box and can tell you exactly where a linebacker lines up on defense. John has CF and it is something that we are always conscious of, but it does not define him or constrain the incredible power of his spirit in any way.
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