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Shop Books. Read an excerpt of this book! Add to Wishlist. USD Sign in to Purchase Instantly. Usually ships within 6 days. Overview Neonatal intensive care has been one of the most morally controversial areas of medicine during the past thirty years. About the Author John D. Table of Contents Acknowledgments 1. Average Review. Write a Review. Related Searches. With this fun romp through the world of equations we encounter in our everyday lives, John M. View Product. Bureaucratic Responsibility.

Neonatal Bioethics: The Moral Challenges of Medical Innovation William L. Meadow

A civil servant in the Pentagon blows the whistle on the Defense Department by leaking A civil servant in the Pentagon blows the whistle on the Defense Department by leaking to the press stories of gross overspending. A high-level official in the Environmental Protection Agency publicly reports irregularities in the handling of toxic waste cleanup All of the scientific and medical passages in this story were fact-checked by neonatologists.

The statistic in the top of Part One of the story, about the number of babies born at the edge of viability, comes from the National Center for Health Statistics' U. The statistics cited by Dr. The claim that prematurity is the leading killer of newborns comes from the March of Dimes. Complications from prematurity, which include low birth weight, respiratory distress syndrome and bacterial sepsis, are several of the top 10 causes of death in the first year of life. Together, they are responsible for more deaths than the No.

The following journal articles were essential to this series, particularly the discussion of the gray zone of viability, how doctors decide when to intervene, and outcomes for extremely preterm infants:. In Part Two of the series, the term "zero zone" comes from a parent quoted in a study conducted by Dr.

About this story

Roberto Sosa, a neonatologist at All Children's Hospital and founder of its neonatal intensive care unit. Sosa's research was instrumental in the design of the NICU, with its emphasis on the parent-child bond and on developmental care. He was important in helping me understand the ethics and challenges of extreme prematurity. The detail about the amount of blood in the body of a ounce baby was calculated by nurse practitioner Diane Loisel.

The detail about the world's smallest surviving baby comes from Guinness World Records. According to an article in the journal Pediatrics , she survived without chronic health problems. A discussion of international physician attitudes about resuscitation at the border of viability can be found in de Leeuw, et al. The prayers from the book in the hospital chapel were compiled from a number of different dates, as I stopped in to read it frequently and continue to do so whenever I am in the hospital. The other prayers I described were related to me in conversations and e-mails, and verified before publication.

The statistics in the infographics online and in the print version of the story on the incidence of major morbidity in preemies come from the following sources:. Most counseling was provided by physicians and bedside nurses. Most of the counseling was performed by physicians or nurse practitioners, followed closely by nurses, with a smaller component of counseling performed by social workers, chaplains and genetic counselors Fig.

The incidence of specific personal care options being offered to parents displayed a wide range.

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Personal care options offered and used. Keepsakes are memory boxes, hand- and footprints, locks of hair, etc. Support person is husband, family or friends who are present. Skin-to-skin is parents holding their baby on their bare chest. Parents preferred having options to choose from and took advantage of multiple options for the personal care of their infant. On average, 7. Conversely, only one respondent indicated that they would have preferred not to have been offered one option that was offered data not shown. Number of personal care options offered and taken. While some mothers would have liked an extended support network in the room, others chose not to utilize this option.

Some mothers stated that they wanted their older children to meet their sibling, while others specifically chose not to do that. To this day I am not sure it was the right decision. While some families found spiritual support very important for their grieving process, others experienced it as a burden. Parents did not have preferences for specific lighting or music. Most parents cherish having photographs, but the sentiment was not universal.

We went so unprepared but now we have pictures to cherish. Respondent preferences did not differ depending on place of death, the timing of counseling, whether parents knew that their infant may not survive, or religious or spiritual beliefs. Parents who knew and those who did not know did not differ in their preference for options or their utilization rate of options data not shown.

Preference for options or the utilization rate for options also did not depend on when counseling occurred or whether the infant died in the labor and delivery room or the NICU data not shown. There were no differences in these groups in terms of preference for options or their utilization rate of options data not shown. Qualitative data was grouped according to recurrent themes.

Parents addressed the necessity of their healthcare providers providing guidance. They described the importance of receiving information to assist with decision making by being presented choices and options, given that this was a very difficult time and they were not prepared with the knowledge of what reasonable options are and what would be helpful to them in their long term grieving process.

The importance of making memories was described by many mothers, since memories are all that parents can take away with them to remind them of the short amount of time they shared with their infant and had the opportunity to parent their infant. Parents noted that they appreciated having a memory box, as well as mementos such as handprints, footprints, locks of hair, photos or having held their infant. The nurses were so understanding and did not rush us. It reminds me that he was real and what my husband and I went through was real. It helps. Parents described the importance of feeling cared for and respected by the medical team and nursing staff during this difficult time in their life.

So many were so caring and kind. We felt it was disrespectful and the body should have been carried out of the room or it should have waited until after we left. We did not want to see that. All other aspects of our hospital stay were handled appropriately and respectfully. Some parents described feelings of regret for what they wished had happened differently or that they could have done differently. Among those, the longing to have spent more time with the baby and to have made more memories with their infant was a significant recurrent theme that was the most prevalent theme of the qualitative questions.

I wish I had been told that they were breathing.


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In this study we show that counseling on the personal care options available to families for their dying or stillborn infant is performed early in relation to the lethal diagnosis being made, but usually after birth. Providing this information to families in a timely manner is important on multiple levels. Second, when parents are confronted with an unfamiliar and stressful situation, they rely heavily on guidance by the medical team.

The importance of memory making with their infant is not only one of the four major themes that emerged in our family interviews, but missed opportunities to make additional memories was also the predominant component of parental wishes and regrets. While these numbers may be altered secondary to recall bias, and in some cases the specifics of the clinical scenario may have precluded counseling, the numbers nonetheless suggest an opportunity for the implementation of additional safeguards to ensure counseling. Our results suggest that rather than being overwhelmed by options for the personal care of their infant at the end of life, parents appreciate being offered options even if they ultimately choose not to utilize every one offered to them.

Thus, it is important that healthcare providers offer sufficient options. Our study demonstrated a wide range in the number of options offered to each parent, as well as a wide range of options utilized by parents.

It is interesting to note that some options, such as holding the baby, were offered to all parents, possibly because of the strong evidence of the utility of this practice. For example, being afforded the opportunity to bond with a dying baby is imperative for grieving and the lack of opportunity to do so leads to complicated grief and mental health issues [ 20 , 21 ].