Long Dying of Baby Andrew

"Andrew Stinson was born just before Christmas in 1976. At birth, he weighed 1 pound 12 ounces, and was almost sixteen weeks premature; he was also critically ill, and was shortly placed on a respirator, where he remained, vulnerable to a succession of medical calamities, for nearly six month. THIS BOOK IS THE STORY OF WHAT HAPPENED DURING THOSE SIX MONTHS. It describes the conflict what arose between the apprehensive parents and the hospital administrators and doctors who assumed responsibility for prolonging....." [from the book of the front flap]

Oh, my. This is a sad sad sad story. I want to thank the authors for sharing their very personal and intimate diaries of their own personal tragedy in 1976/77. I was a sophomore in college getting my BSN (Nursing degree) the year Andrew was born. I went to a large Catholic university in a big city attached to a major and prestigious teaching hospital. I remember the idea of "ethics committees" in hospitals were just beginning to perhaps informally come together, case by case. In 1976 as a student I cared for an adult who wanted to stop his dialysis treatments that were essentially keeping him alive since he was dying of pancreatic cancer. A technologically simpler case than baby Andrew perhaps, but it was nonetheless a BIG deal at the time. Similar in essence that once you begin a treatment it is almost impossible to stop it. After several weeks and multiple meetings and consults by all different types of physicians including psychiatry he was allowed to die.Although living wills hadn't made an appearance yet I DO remember discussing these sorts of issues in our Nursing classes. Hospital nurses are by definition often stuck in the middle as these real life/death dramas play out. We are "patient advocates" but we must follow "doctors' orders." If it is any comfort to the Stinsons and other distraught parents/family members, we (nurses) have been there to hold and love those left behind,that technology has rendered too sick to die. I know, I've done it myself. I don't ever remember us judging a parent for deserting their baby either. Maybe wondered about it, but then perhaps more determined to care for the baby. And yes, babies are deserted.(I worked in a Peds ICU with many "graduate from the NICU", growing preemies.)I can certainly see how a nurse such as young, soft-spoken Marilyn would become "overly attached" etc. We're human too and this is an on-going struggle/balance, especially early in your career while you figure out exactly whose emotional needs you are meeting. Apparently it does matter which hospital/doctors etc one ends up in because at least by 1980, my 2nd year working (still in the above-mentioned university Catholic hospital), I cared for babies where there were quietly "no heroics" who were allowed to die peacefully. I think this book should be required reading by everyone entering the hospital healthcare field today. Oh, and I want to especially thank the authors for clarifying the Catholic Church's teaching on heroic measures early in the book around pg 65 or so.

I've owned this book since it was printed. This is an extraordinary, sensitive book of pure truth. The juxtaposition of the Stinsons' diaries during their little son's long, agonizing little life, with the medical records obtained after his death, are a horror. The parents were not informed of what was happening to their son.What the parents were told about what was actually happening to their little boy were so terribly untrue. (A "sore on his leg" was actually a hospital-induced abscess that had to be scraped off, muscles and tendons and all, clear to his tiny bone, for instance)I have read this book many, many times. I know that even today, 2004, this story has not changed nearly as much as it should have.Some hospitals are much more informative and compassionate than others, but when it's your baby, you land where you land.Some have criticized the Stinsons for their emotional reactions. No one should ever do that unless they have been in the position of suffering a miscarriage that turned out to be a live, but barely alive baby. And a baby who continues to become more and more damaged, through his entire hospital-bound life.Anyone interested in the detailed realities of the life of an extrememly premature baby, should obtain this book, and keep it in a very safe place! There is not another like it.And I give my congratulations to the Stinsons, for their honesty, their bravery, and their ability to share their story with the American public, who ought to know.

Through a mix of their journal entries, and excerpts from medical reports (obtained after Baby Andrew died), the parents of Baby Andrew chronicle the short life of their prematurely born son. Advised that he was too premature to survive, they asked that he not be resuscitated. He is, and later on he is transferred to another hospital where he is placed on a ventilator against their wishes. They felt, since all evidence available suggested that he could not survive, that he should be made comfortable, and then allowed to live or die. Their book then chronicles their long struggle with the hospital staff to have their opinions discussed and taken seriously. The book also chronicles their struggle to get reliable information from the hospital staff. A comparison of the medical record to the parents' journal entries gives one a clear picture of the overly optimistic picture that was presented by the doctors, and survival studies that were either misrepresented or misunderstood. The journal entries, which seem to have been only slightly edited, read like a cockpit voice recording from an airplane accident. It is nearly impossible to stop reading even though you feel you are intruding into their private lives. First, their social life, then their married life, and finally their financial life, collapse under the strain of having a baby in an intensive care unit without being able to do much to monitor or influence the course of their baby's care. It is all laid out, leaving one to wonder if he or she could do any better. In the end the doctors, without the parents' input, allow Baby Andrew to die. But after five months of pain for the unfortunate patient, or maybe "experimental subject" would be a better phrase, since some of the treatments used were, at the time, not fully understood. Other entries in the excerpts from the medical records (with translations for the non-medical) are doctors' or nurses' observations of the patient that are emotionally difficult to read, and leaves one wondering what was excluded. It would be optimistic to think that, since the events in the book happened 26 years in the past, these problems have gone away. But there is still a boundary where life is marginal, and decisions still have to be made if one attempts to save a life or not. Sadly, it is also the experience of this reviewer that doctors still do not like to have their decisions questioned, and still threaten to remove the parents from their baby's case should they ask to be included in the decision making process. Although the doctors like to present themselves as dispassionate supporters of the baby's interests, the book points out that the doctors have financial and professional interests in attempting to save these marginally viable premature infants. Termination or restriction of care is a subject that arouses deep passions, and can be difficult to consider. But I would recommend this book if you think that you might be called upon to try and make such

In what has become a classic in the literature of bioethics, Robert and Peggy Stinson give a harrowing account of the birth of their extremely premature baby, Andrew, and his suffering at the hands of neonatal specialists more interested in highly profitable medical experimentation than in humane care. Born at 24 weeks gestation (a normal pregnancy lasts 42 weeks), Baby Andrew is placed on a mechanical ventilator against his parents' wishes. He remains ventilator-dependent for the rest of his life, suffering the many predictable side-effects of his "life-sustaining" treatments. The ventilator and related therapies severely damage his brain, eyes, lungs and other organs . He suffers numerous bouts of pneumonia and sepsis, as well as gangrene that necessitates the removal of his right leg muscle down to the bone. When Andrew's bones begin to break, a consequence of neonatologists' inability to adequately nourish prematurely born babies, one of Andrew's doctors states that the only time he had seen so many fractures was in an air force crash victim. Another physician casually remarks that Andrew remains ventilator-dependent because with all his broken ribs "it hurts like hell every time he takes a breath." When Robert and Peggy object to their son's damaging treatment and the excruciating prolongation of his dying, the doctors characterize them as "immoral" and threaten them with legal action.Although this book was written in the 1970s, the sitautions and issues described are very much with us today, as neonatologists continue to push back the margins of viability and engage in undeclared experimentation on premature infants. The result continues to be disenfranchised parents, iatrogenic disasters, and tremendous costs -- human and financial -- for the families, babies, and society. The Stinson's eloquent and intelligent discussion of these difficult ethical issues is a "must" for anyone who has experienced (or might experience) an extremely premature birth as well as anyone interested in the use and misuse of modern lifesaving technology.