Dr. Robert deLemos was a retired Air Force colonel and a nationally known expert in the field of neonatology. Perhaps most notably, he was a pioneer in modern infant ventilation. I had heard that while watching the news about President John and Jaqueline Kennedy's premature baby, he was moved that the most powerful man in the world could do nothing to help his baby from dying from respiratory distress syndrome - the same disease afflicting Christopher. His research in high frequency ventilation ultimately led Dr. Forrest Bird to develop and commercialize the “Babybird” respirator for infants which reduced infant mortality due to this infant lung disease from 70% to under 10%. Christopher had left Santa Rosa and a traditional ventilator to come to Wilford Hall where Dr. deLemos was continuing his research of this high frequency ventilator technology.
As the former head of neonatology at Wilford Hall, he would occasionally visit the NICU. I would often see him with several students making a tour through the NICU. He would stop at each bed and talk for a few minutes and then move on. I had heard that he was a no-nonsense, all business kind of a person and my encounters with him amounted to nothing more that a cordial greeting. On one occasion, during his visit through the NICU, I overheard his discussion about Christopher. I had just finished scrubbing up and putting on my gown when I noticed he was in Christopher's area. Not wanting to interrupt or be in the way, I stood in the doorway and waited. As he turned and began discussing Christopher's case, I was surprised to hear what he had to say. He said that medically, Christopher shouldn't be alive but was being kept alive by his parents' love. He continued by telling how we would visit several times a day and pointed out a tape deck that we left in Christopher's bed. In it was a tape that Woody had recorded for when we weren't there. On one side, she sang hymns and songs of worship. On the other side, she read stories. I would have never thought that these words would ever come out of a doctor’s mouth, especially based upon all the things that I had heard about him. Unknown to him, he was giving me some much needed encouragement. There were many occasions I would visit the hospital and wonder if our visits were really beneficial to Christopher. He would just lay there, paralyzed. Hearing Dr. deLemos' conversation helped me realize once again what a miraculous baby God had given us.
On several occasions, Dr. deLemos would relieve Dr. Null and the neonatal fellows and serve in the nursery. On one occasion, we came to visit Christopher while he was on duty. The nursery was calm for an environment that usually had at least one baby needing some kind of medical attention. Seeing the opportunity, Dr. deLemos asked if Woody and I would like to discuss Christopher's prognosis. Prior to this visit, Dr. Null and his staff had requested that Christopher undergo a lung biopsy. That is where they remove a small section of lung tissue so they can determine the condition of the lungs. As expected, there was a lot of scar tissue in his lungs. Judging by the reaction of the doctors, the biopsy altered their optimism of Christopher's long-term prognosis. We soon found out that this lack of optimism was shared by Dr. deLemos as well.
Dr. deLemos took Woody and I into an office and began telling us that there was a time in the effort to save a chronically ill patient that we needed to start thinking of the patient's quality of life. Prior to our encounter I had read with interest how more and more doctors were involved in methods where they would knowingly allow or help a patient to die. I hoped that this moment would never come for Christopher but judging from Dr. deLemos' opening comments, I knew what was coming. He went on to suggest that it didn't have to be right away but that Christopher's prognosis wasn't very positive and he hated to see him have to undergo so much pain and suffering. He felt we ought to be thinking about disconnecting Christopher from the respirator to allow him to die.
At first, I really didn't know what to say. It was difficult reading about situations such as ours, but having to hear these words concerning our own son so difficult. I began to respond to him by discussing our faith. In a very condensed version I told him of our faith and how we had arrived to this point in our journey. But most importantly, I told him how on every occasion God had seen us through. As I was talking, I couldn't help but think how amazing it was that God would place us before such an important person in medicine to tell him of our faith. As I spoke, Dr. deLemos remained quiet and politely listened. I then began discussing his suggestion.
"I don't believe that we should try to be the ones to decide whether a person should live or die," I began. "We believe that God numbered our days even before we were born. Earlier, we made the decision to put our son on this life support system. You would have received praise had Christopher successfully come off of this life support. We're still hoping and praying that one day he will. I don't think we can sweep situations like this under the carpet. These situations are a product of our advanced efforts to sustain life and we need to face them with the same compassion and concern for the patient as when we started."
I think that patients like Christopher must be every doctor's nightmare. When a patient is as critically ill as Christopher, a decision is made to place that patient on extraordinary life support. The thought being that the patient will either be helped, or will die. But what do you do about patients like Christopher who become dependent on the life support? When I had heard that some doctors had made a decision to disconnect a little baby girl from her ventilator because she showed no signs of life, it made me realize how these decisions can be so difficult and complicated. It is much easier judging a situation from the outside. I came to the conclusion that there is no easy answer. The only answer is to continuously seek God's will in each situation. Christopher presented such a unique problem for the doctors because he was showing signs of life. In fact, he was doing well in every aspect except his lungs. He had never bled into his brain, he had no known defects or handicaps, and he was growing well.
I asked Dr. deLemos, "What would we do? Would we disconnect him and watch this otherwise normal and healthy child suffocate to death?"
Dr. deLemos responded by saying, "My concern is for the patient. I just hate to see a patient suffer. Sometimes I feel it must be better to allow them to die rather than see their suffering continue."
"One of the things I pray over and over is that Christopher will not remember these days," I responded. "I am so thankful that God created us so that we don't remember pain. All of the IVs, chest tubes, surgeries, and respirators may leave their distinct scars on his body, but he will forget the pain."
As I looked up at Dr. deLemos, big tears had welled up in both eyes. He paused for a long time and then began telling us a story.
"Once when I was serving as the chief neonatologist here, we had a patient that suffered many complications. I never felt as though he was going to survive. In addition to the typical problems associated with premature babies, he was born with a rare defect that causes all the joints to be reversed. He miraculously survived his prematurity, but then we had to go through the process of breaking his bones and resetting them. The whole process took years to complete and he is still undergoing some treatment. I remember watching all of the pain and suffering that child had to undergo, the times he would cry and scream and yell from the pain. This year he graduated from CAMP (Children Achieving their Maximum Potential) and I was there at his graduation. When he walked by himself across the stage it brought back many memories. I thought about all of the times I doubted whether we were doing the right thing by subjecting him to all of his treatments. Following the ceremony, I asked him if all of the many years of treatment were worth it. He responded by saying, 'Was what worth it?' He had forgotten the pain."
© Copyright 1987, 2016 by Rick Murata. All Rights Reserved.
As the former head of neonatology at Wilford Hall, he would occasionally visit the NICU. I would often see him with several students making a tour through the NICU. He would stop at each bed and talk for a few minutes and then move on. I had heard that he was a no-nonsense, all business kind of a person and my encounters with him amounted to nothing more that a cordial greeting. On one occasion, during his visit through the NICU, I overheard his discussion about Christopher. I had just finished scrubbing up and putting on my gown when I noticed he was in Christopher's area. Not wanting to interrupt or be in the way, I stood in the doorway and waited. As he turned and began discussing Christopher's case, I was surprised to hear what he had to say. He said that medically, Christopher shouldn't be alive but was being kept alive by his parents' love. He continued by telling how we would visit several times a day and pointed out a tape deck that we left in Christopher's bed. In it was a tape that Woody had recorded for when we weren't there. On one side, she sang hymns and songs of worship. On the other side, she read stories. I would have never thought that these words would ever come out of a doctor’s mouth, especially based upon all the things that I had heard about him. Unknown to him, he was giving me some much needed encouragement. There were many occasions I would visit the hospital and wonder if our visits were really beneficial to Christopher. He would just lay there, paralyzed. Hearing Dr. deLemos' conversation helped me realize once again what a miraculous baby God had given us.
On several occasions, Dr. deLemos would relieve Dr. Null and the neonatal fellows and serve in the nursery. On one occasion, we came to visit Christopher while he was on duty. The nursery was calm for an environment that usually had at least one baby needing some kind of medical attention. Seeing the opportunity, Dr. deLemos asked if Woody and I would like to discuss Christopher's prognosis. Prior to this visit, Dr. Null and his staff had requested that Christopher undergo a lung biopsy. That is where they remove a small section of lung tissue so they can determine the condition of the lungs. As expected, there was a lot of scar tissue in his lungs. Judging by the reaction of the doctors, the biopsy altered their optimism of Christopher's long-term prognosis. We soon found out that this lack of optimism was shared by Dr. deLemos as well.
Dr. deLemos took Woody and I into an office and began telling us that there was a time in the effort to save a chronically ill patient that we needed to start thinking of the patient's quality of life. Prior to our encounter I had read with interest how more and more doctors were involved in methods where they would knowingly allow or help a patient to die. I hoped that this moment would never come for Christopher but judging from Dr. deLemos' opening comments, I knew what was coming. He went on to suggest that it didn't have to be right away but that Christopher's prognosis wasn't very positive and he hated to see him have to undergo so much pain and suffering. He felt we ought to be thinking about disconnecting Christopher from the respirator to allow him to die.
At first, I really didn't know what to say. It was difficult reading about situations such as ours, but having to hear these words concerning our own son so difficult. I began to respond to him by discussing our faith. In a very condensed version I told him of our faith and how we had arrived to this point in our journey. But most importantly, I told him how on every occasion God had seen us through. As I was talking, I couldn't help but think how amazing it was that God would place us before such an important person in medicine to tell him of our faith. As I spoke, Dr. deLemos remained quiet and politely listened. I then began discussing his suggestion.
"I don't believe that we should try to be the ones to decide whether a person should live or die," I began. "We believe that God numbered our days even before we were born. Earlier, we made the decision to put our son on this life support system. You would have received praise had Christopher successfully come off of this life support. We're still hoping and praying that one day he will. I don't think we can sweep situations like this under the carpet. These situations are a product of our advanced efforts to sustain life and we need to face them with the same compassion and concern for the patient as when we started."
I think that patients like Christopher must be every doctor's nightmare. When a patient is as critically ill as Christopher, a decision is made to place that patient on extraordinary life support. The thought being that the patient will either be helped, or will die. But what do you do about patients like Christopher who become dependent on the life support? When I had heard that some doctors had made a decision to disconnect a little baby girl from her ventilator because she showed no signs of life, it made me realize how these decisions can be so difficult and complicated. It is much easier judging a situation from the outside. I came to the conclusion that there is no easy answer. The only answer is to continuously seek God's will in each situation. Christopher presented such a unique problem for the doctors because he was showing signs of life. In fact, he was doing well in every aspect except his lungs. He had never bled into his brain, he had no known defects or handicaps, and he was growing well.
I asked Dr. deLemos, "What would we do? Would we disconnect him and watch this otherwise normal and healthy child suffocate to death?"
Dr. deLemos responded by saying, "My concern is for the patient. I just hate to see a patient suffer. Sometimes I feel it must be better to allow them to die rather than see their suffering continue."
"One of the things I pray over and over is that Christopher will not remember these days," I responded. "I am so thankful that God created us so that we don't remember pain. All of the IVs, chest tubes, surgeries, and respirators may leave their distinct scars on his body, but he will forget the pain."
As I looked up at Dr. deLemos, big tears had welled up in both eyes. He paused for a long time and then began telling us a story.
"Once when I was serving as the chief neonatologist here, we had a patient that suffered many complications. I never felt as though he was going to survive. In addition to the typical problems associated with premature babies, he was born with a rare defect that causes all the joints to be reversed. He miraculously survived his prematurity, but then we had to go through the process of breaking his bones and resetting them. The whole process took years to complete and he is still undergoing some treatment. I remember watching all of the pain and suffering that child had to undergo, the times he would cry and scream and yell from the pain. This year he graduated from CAMP (Children Achieving their Maximum Potential) and I was there at his graduation. When he walked by himself across the stage it brought back many memories. I thought about all of the times I doubted whether we were doing the right thing by subjecting him to all of his treatments. Following the ceremony, I asked him if all of the many years of treatment were worth it. He responded by saying, 'Was what worth it?' He had forgotten the pain."
© Copyright 1987, 2016 by Rick Murata. All Rights Reserved.