Opinion
ON MY MIND Carlo Bellini, MD, PhD Terapia Intensiva Neonatale, Dipartimento Emergenza, Istituto G. Gaslini, Genova, Italy.
Corresponding Author: Carlo Bellini, MD, PhD, Terapia Intensiva Neonatale, Dipartimento Emergenza, Istituto G. Gaslini, Largo G. Gaslini, 5, 16147 Genova, Italy (carlobellini@ospedale -gaslini.ge.it). jamapediatrics.com
God Was Born Prematurely A charming, refined, great lady, who incidentally was my wonderful philosophy teacher during high school (liceo in Italian) claimed that atheists secretly reprimand God because He did not create us like angels and because He made us feel both homesick for our true home, the Garden of Eden, and searing pain over having been cast out of it. To this day, I still don’t know whether this statement was borrowed from some famous philosopher or simply my teacher’s own idea, an effort to start a debate in the classroom. Furthermore, I never found out whether my teacher was a believer or an atheist herself. However, high school is a distant memory now, and as a neonatologist, neonatology has been my field for decades. It is considered a very young medical discipline that has developed rapidly since the 1960s, some claim after the death of Patrick Bouvier Kennedy at 34 weeks’ gestation, the child of President John F. Kennedy and First Lady Jacqueline Bouvier Kennedy. Medical awareness regarding the need for neonatal intensive care increased and soon led to the establishment of neonatal intensive care units (NICUs) around the world. More premature babies than ever now live and thrive. Progress in neonatal care can go to extremes, toward limits that were unimaginable only a few years ago and toward highly advanced techniques, which, however, sometimes slip through our fingers and go beyond our ability to control and manage them. Modern neonatology, like modern medicine, offers choices, albeit not always easy ones. Feeders and growers (ie, infants who are at 30-34 weeks’ gestation) have a well-defined course, thus putting us neonatologists on solid ground. But when we approach micropreemies, the scenario worsens, forcing us to walk along an undefined and ambiguous ridge, which is more often erratic and always swaying between the blinding light and darkness. Narratives have always been a vital part of medicine, and they can be seen as a sort of bridge between the evidence of large-scale randomized controlled studies and the medical arts; thus, they are able to transfer general knowledge to a single case or provide solace to a patient’s mind and soul. Like patient narratives, physicians’ stories can also contribute to the rehumanization of medicine. With all this in mind, I would like to describe something that happened to me years ago during a night shift, one of many in my long career as a neonatologist. A mother was standing in front of an incubator looking at her tiny baby who had been born at 25 weeks of gestation and was now 10 days old. During this brief but demanding 10-day period, the NICU staff tried to prepare the parents for dealing with the countless difficulties they were about to face. Every aspect of the child’s critical clinical condition was discussed, and the possibilities and
risks of infection for their tiny baby were described in detail. The main difficulty in cases like these is always the same (namely, how to face the controversial issues regarding the ethical acceptability of withholding or withdrawing intensive care and/or mechanical ventilation). One side of the coin is based on the concept of the “sanctity” of life, a gift from God with an absolute value regardless of its quality, whereas the other side of the coin is the consideration of the “quality” of life as the cornerstone, clearly involving historical, social, cultural, religious, and legal factors. It is extremely difficult for us to make ourselves understood when we explain to fearful parents that any course of action that accelerates, facilitates, or simply allows their baby’s demise may be considered unethical or, the very opposite, that survival deprived of at least the basic qualities that characterize human life may be considered insufferable, and that comfort care would be wiser. With these doubts and uncertainties, the silent and worried mother stood close to the incubator holding her baby for a long time. Suddenly, the baby became unstable and all the alarm bells started to sound. The child’s clinical condition worsened very quickly, and despite prompt and competent resuscitation maneuvers, the baby died. This tragic event unfolded before the mother’s very eyes, quickly dashing any uncertainty, as well as any hope. A few days later, the mother asked me, very simply, “why?” This question was charged with hidden meaning. It could have meant any of the following unanswered questions: Why did my baby die? Why was my baby born so early? Why me? I had my own unanswered questions: Why so much useless pain and suffering for such a fragile and vulnerable human being? Why so much worthless suffering and pain for such a hard-hit mother who experienced such a cruel epilogue, such failure and loss? She then asked me: “Where was God, and what was He thinking about?” At that point, the aforementioned statement by my adorable old philosophy teacher came to my mind. “Each of us,” I answered the mother, “has a guardian angel. Some believe, some don’t. I am convinced that my guardian angel lives very close to me. The hard work we carry out every day within such an uncertain field as is modern neonatology sometimes reaches beyond what our deep knowledge, skills, and talents actually are. We continuously need help, support, and divine inspiration. Very premature babies who are born, live briefly, and then die and who spend their fleeting lives in any NICU in the world are intensely loved, always deeply loved. This is why they remain in the NICU with us and survive forever, ignoring the passage of time. They can reassure us, endorse and support us, compel us to hang in there, and guide us when we lurch alongside or over the labile border, setting our secure foot in life, setting our hesitant foot in death. Each mother of these tiny and only seemJAMA Pediatrics Published online May 5, 2014
Copyright 2014 American Medical Association. All rights reserved.
E1
Opinion On My Mind
ingly lost babies has a privileged, noble, and worthy aim: they devote themselves to the effort of maintaining the multitude of guardian angels protecting micropreemies wherever they are in the world.” The mother listened to me, revealed a faint smile that was dampened by her tears, and left. I never heard from her again. We are all sons and daughters, and we know very well that each and every mother’s tear expresses delight or worry, pleasure or frustration, loneliness, pride, and sometimes suffering and pain, but, above all, love, endless, absolute, and pure love. I strongly hoped, and I want to believe, that my sincere words were able to console and alleviate, even if only just partially, the mother’s pain. It is very hard to explain, merely on the basis of scientific or logical elements, how it is possible that such tiny babies are able to ride through so many arduous battles, holding out and showing unwavering willpower to survive and, eventually, to live, and live well. And, again, it is hard to explain how their parents, who are suddenly deprived of the right to proclaim their pride and joy over becoming parents while simultaneously being thrown into the unknown and frightPublished Online: May 5, 2014. doi:10.1001/jamapediatrics.2013.5303.
E2
ful world of the modern NICU, can stay on their feet, resisting proudly and courageously despite their inappropriate feelings, keeping the faith that their babies will never “throw in the towel.” These heroic parents come to realize that their love is as useful as the best available therapies. In our modern, western society, like in our NICUs, there are atheists as well as believers (Catholics, Jews, Muslims, or members of any number of religious groups). Their emotional responses are the same as their babies’, always brave and fearless. The general perception is that the brief life of these tiny babies is somehow disharmonious. Who can explain why a human life may be as long as a century or a mere instant? Birth, life, and death represent the depth and the mystery of nature, the true harmony of life. I am not sure, but deep down in my heart, if ever God had a beginning, I think that He was born prematurely. He was probably the first guardian angel of an ironwilled, proud generation that from time immemorial has nurtured hope and life in NICUs all over the world. If only there were more atheists like my wonderful philosophy teacher!
Conflict of Interest Disclosures: None reported.
JAMA Pediatrics Published online May 5, 2014
Copyright 2014 American Medical Association. All rights reserved.
jamapediatrics.com
ON MY MIND Carlo Bellini, MD, PhD Terapia Intensiva Neonatale, Dipartimento Emergenza, Istituto G. Gaslini, Genova, Italy.
Corresponding Author: Carlo Bellini, MD, PhD, Terapia Intensiva Neonatale, Dipartimento Emergenza, Istituto G. Gaslini, Largo G. Gaslini, 5, 16147 Genova, Italy (carlobellini@ospedale -gaslini.ge.it). jamapediatrics.com
God Was Born Prematurely A charming, refined, great lady, who incidentally was my wonderful philosophy teacher during high school (liceo in Italian) claimed that atheists secretly reprimand God because He did not create us like angels and because He made us feel both homesick for our true home, the Garden of Eden, and searing pain over having been cast out of it. To this day, I still don’t know whether this statement was borrowed from some famous philosopher or simply my teacher’s own idea, an effort to start a debate in the classroom. Furthermore, I never found out whether my teacher was a believer or an atheist herself. However, high school is a distant memory now, and as a neonatologist, neonatology has been my field for decades. It is considered a very young medical discipline that has developed rapidly since the 1960s, some claim after the death of Patrick Bouvier Kennedy at 34 weeks’ gestation, the child of President John F. Kennedy and First Lady Jacqueline Bouvier Kennedy. Medical awareness regarding the need for neonatal intensive care increased and soon led to the establishment of neonatal intensive care units (NICUs) around the world. More premature babies than ever now live and thrive. Progress in neonatal care can go to extremes, toward limits that were unimaginable only a few years ago and toward highly advanced techniques, which, however, sometimes slip through our fingers and go beyond our ability to control and manage them. Modern neonatology, like modern medicine, offers choices, albeit not always easy ones. Feeders and growers (ie, infants who are at 30-34 weeks’ gestation) have a well-defined course, thus putting us neonatologists on solid ground. But when we approach micropreemies, the scenario worsens, forcing us to walk along an undefined and ambiguous ridge, which is more often erratic and always swaying between the blinding light and darkness. Narratives have always been a vital part of medicine, and they can be seen as a sort of bridge between the evidence of large-scale randomized controlled studies and the medical arts; thus, they are able to transfer general knowledge to a single case or provide solace to a patient’s mind and soul. Like patient narratives, physicians’ stories can also contribute to the rehumanization of medicine. With all this in mind, I would like to describe something that happened to me years ago during a night shift, one of many in my long career as a neonatologist. A mother was standing in front of an incubator looking at her tiny baby who had been born at 25 weeks of gestation and was now 10 days old. During this brief but demanding 10-day period, the NICU staff tried to prepare the parents for dealing with the countless difficulties they were about to face. Every aspect of the child’s critical clinical condition was discussed, and the possibilities and
risks of infection for their tiny baby were described in detail. The main difficulty in cases like these is always the same (namely, how to face the controversial issues regarding the ethical acceptability of withholding or withdrawing intensive care and/or mechanical ventilation). One side of the coin is based on the concept of the “sanctity” of life, a gift from God with an absolute value regardless of its quality, whereas the other side of the coin is the consideration of the “quality” of life as the cornerstone, clearly involving historical, social, cultural, religious, and legal factors. It is extremely difficult for us to make ourselves understood when we explain to fearful parents that any course of action that accelerates, facilitates, or simply allows their baby’s demise may be considered unethical or, the very opposite, that survival deprived of at least the basic qualities that characterize human life may be considered insufferable, and that comfort care would be wiser. With these doubts and uncertainties, the silent and worried mother stood close to the incubator holding her baby for a long time. Suddenly, the baby became unstable and all the alarm bells started to sound. The child’s clinical condition worsened very quickly, and despite prompt and competent resuscitation maneuvers, the baby died. This tragic event unfolded before the mother’s very eyes, quickly dashing any uncertainty, as well as any hope. A few days later, the mother asked me, very simply, “why?” This question was charged with hidden meaning. It could have meant any of the following unanswered questions: Why did my baby die? Why was my baby born so early? Why me? I had my own unanswered questions: Why so much useless pain and suffering for such a fragile and vulnerable human being? Why so much worthless suffering and pain for such a hard-hit mother who experienced such a cruel epilogue, such failure and loss? She then asked me: “Where was God, and what was He thinking about?” At that point, the aforementioned statement by my adorable old philosophy teacher came to my mind. “Each of us,” I answered the mother, “has a guardian angel. Some believe, some don’t. I am convinced that my guardian angel lives very close to me. The hard work we carry out every day within such an uncertain field as is modern neonatology sometimes reaches beyond what our deep knowledge, skills, and talents actually are. We continuously need help, support, and divine inspiration. Very premature babies who are born, live briefly, and then die and who spend their fleeting lives in any NICU in the world are intensely loved, always deeply loved. This is why they remain in the NICU with us and survive forever, ignoring the passage of time. They can reassure us, endorse and support us, compel us to hang in there, and guide us when we lurch alongside or over the labile border, setting our secure foot in life, setting our hesitant foot in death. Each mother of these tiny and only seemJAMA Pediatrics Published online May 5, 2014
Copyright 2014 American Medical Association. All rights reserved.
E1
Opinion On My Mind
ingly lost babies has a privileged, noble, and worthy aim: they devote themselves to the effort of maintaining the multitude of guardian angels protecting micropreemies wherever they are in the world.” The mother listened to me, revealed a faint smile that was dampened by her tears, and left. I never heard from her again. We are all sons and daughters, and we know very well that each and every mother’s tear expresses delight or worry, pleasure or frustration, loneliness, pride, and sometimes suffering and pain, but, above all, love, endless, absolute, and pure love. I strongly hoped, and I want to believe, that my sincere words were able to console and alleviate, even if only just partially, the mother’s pain. It is very hard to explain, merely on the basis of scientific or logical elements, how it is possible that such tiny babies are able to ride through so many arduous battles, holding out and showing unwavering willpower to survive and, eventually, to live, and live well. And, again, it is hard to explain how their parents, who are suddenly deprived of the right to proclaim their pride and joy over becoming parents while simultaneously being thrown into the unknown and frightPublished Online: May 5, 2014. doi:10.1001/jamapediatrics.2013.5303.
E2
ful world of the modern NICU, can stay on their feet, resisting proudly and courageously despite their inappropriate feelings, keeping the faith that their babies will never “throw in the towel.” These heroic parents come to realize that their love is as useful as the best available therapies. In our modern, western society, like in our NICUs, there are atheists as well as believers (Catholics, Jews, Muslims, or members of any number of religious groups). Their emotional responses are the same as their babies’, always brave and fearless. The general perception is that the brief life of these tiny babies is somehow disharmonious. Who can explain why a human life may be as long as a century or a mere instant? Birth, life, and death represent the depth and the mystery of nature, the true harmony of life. I am not sure, but deep down in my heart, if ever God had a beginning, I think that He was born prematurely. He was probably the first guardian angel of an ironwilled, proud generation that from time immemorial has nurtured hope and life in NICUs all over the world. If only there were more atheists like my wonderful philosophy teacher!
Conflict of Interest Disclosures: None reported.
JAMA Pediatrics Published online May 5, 2014
Copyright 2014 American Medical Association. All rights reserved.
jamapediatrics.com
