I read this book called Baby at RiskI'm really hoping for a discussion. This book was published in 2006 so it's quite old given how fast medicine moves. And it has me conflicted about the history and how treatment is decided in the NICU. But I wanted to talk to actual nurses in the field to see how accurate it really is. Maybe the book is misleading. Here are some excerpts from the book about how some babies have been saved when maybe they shouldn’t have been considering what a low quality of life they go on to live. Stories like Michael from below scares me. It becomes more complicated when you think about the world’s allocation of resources. I know this is a difficult topic but I hope all of us can remain civil and not try to paint the other person in a bad light
Baby at Risk: The uncertain Legacies for Medical Miracles for babies, families, and society.
So from the book: none of this is my own words
NICUs are horrible, wonderful places. They save many lives and they cause much pain and suffering The question that has hovered around these unites since they were first developed in the late 1960s is whether we can have the good without the bad or if whether the current balance of benefits to burdens is worth it. - one doctor tells the author
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Dr Siva "If you draw a line \[ NICU rescues\] that is where progress stops. If you push the envelope, things might improve. But it's a catch 22. The questions when do you keep pushing and when do you say 'enough is enough'.
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" The NICU in the United States today has gotten completely out of hand. When I came into the field in the 1940s, the hospital environment for babies was simple- clean, warm. Nurses would feed the newborn babies. Those who were meant to survive did, and if they did survive they did well. They who couldn't make it were allowed to die; they were said to be stillborn. People in this country act as though there are no limits. Yet there is a limit because human reproduction is an imperfect process.I never wanted to be a neonatalogy to be a speciality because the focus is too narrow. It doesn't allow docotros to see what happens next to the children they save. It doesn't allow them to see the consequences of their interventions as they fulfill their personal rescue fantasties. " Dr. Bill Silverman(a pioneer of the field) told the author. Bill regretted that he has allowed his commitment to an "unshakable obligation to prolong life" to trump all other considerations. Only later did he learn and come to appreciate "that most parents feared disability much than death. They feared overrtreatment and said so very directly. Dr Bill Silverman grew increasingly uncomfortable with the neonatology with the technological imperative that hurt babies that was driving many intensivists to use new technologies because they existed even when they didn't make good sense and the team think approach that was allowing individual interventions to absolve them from personal responsibility for the pain and suffering the interventions were causing the babies and their families. The diffusion of responsibility allowed people not to worry about horrendous consequences of their actions.
Author talked about how babies born premature in 1950s were growing up blind from the oxygen gas in their intubators. The ventilators became the archetypal halfway technology getting babies only halfway to where they needed to be to lead healthy lives. A symbol of the first of the many medicines, therapies, the interventions that hurt the babies instead of healing them.
Some words from parents with had babies that were NICU graduates
"My son David was created by doctors. If the doctors could not give David a reasonable chance for a life of quality they should have let him die. And there's the old story- follow the money My insurance company paid $500,000 to this profit center. The doctors salvaged my son. They didn't save him. There are some things worse than death, an this is it " David was 13 years old when the author talked to him. He was functioning at the level of a three year old. He was born at 24 weeks.
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Michael weighed one pound and fifteen ounces. He spent nine of his life life in the hospital and his days were fraught with interventions and crises -jaundice, bili light treatments, blood transfusions, brain bleeds, ventilator support, lung damage, poisonous levels of blood gases, breathing and heart problems. Michael is now six years, not toilet trained, will probably always need a feeding tube. His medical chart includes a daunting list: autism, bulbar palsy, behavioral difficulties, severe speech and language disorders, chronic lung disease, immunodeficiences, learning difficulties and so on.
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Michael's mom Debby tells the author" I have to be honest and say I feel like we live in a prison. We're locked in the house because the outside world is not such a safe place for Michael, and yet neither is home. If NICUs are to continue to save extremely premature babies then the whole miracle baby myth needs to be dispelled. People need to realize that these babies comes at a price. No one warned us, for example, of the difficulties that kids with feeding tubes experience. We thought the tube would be in for a year and then be removed. But I've recently discovered that there is a chances that Michael will be in nappies at night for the rest of his life"
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The author talked about the 2004 BBC documentary about 314 NICU graduates. 50 % had disabilities by the time they reached 2 and half of those disabilities were severe blindness, deafness, and cerebral palsy. 80 percent were dealing with physical or learning disabilities and impairments or both.
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The author talked about NICUs had become profit centers and economic centers for certain hospitals. here is an article [https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2009.0897](https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2009.0897)
This passage near the end was thought provoking:
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The NICU represents an "island mentality suggesting that economic development that improves the lives of a few peopl, while neglecting a vast peripheral population is a sound strategy for coping with the global crisis of resources and population. The NICU must be a temprorary historial phenomenom. Looking ahead fifty years to a world of a doubled population and even more greatly stressed world resources, it is incredible to think we will continue to invest social resources in such an extravagant and unbalanced way; and, if we we may well be charged by the next generations with inhumanity... \[as they\] count the lives that were not saved because our culture neglected the larger picture of life and death" Andy Jameton a philosopher wrote in around 1995. When the author asked him now he said he no longer thought that the NICUs would vanish because "profit centers are not very strict about whom they accept. Andy had come tho think more kindly about "rescue" although he felt that the US investment in rescue at the cost of public and environmental health was still "majorly excessive We need ways to do less and we need community decisions to decide what we are going to do".
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But perhaps NICUs could make themselves more useful. They could be more discriminating. They could accept only babies whose chance for a healthy life was significant . They could stop accepting micropreemies and other babies, who, in low tech settings, would simply die- the ones who Bill Silverman had told me were once labeled stillborn. They could stop accepting babies whose "cures" were still just fantasies.
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