The Principles for Family-Centered Neonatal Care

Helen Harrison


"Empowering Parents of Premature Infants:
A Conference for Parents and Professionals"
July 25, 1998
Cobo Center
Detroit, Michigan
Six years ago, I was among a group of parents of premature babies who wrote an article entitled "The Principles for Family-Centered Neonatal Care."(1) When it appeared in the November 1993 issue of Pediatrics, it was the only article written by parents that Pediatrics had ever published. I believe it remains so today.
Because I coordinated the drafting of "The Principles..," I'm listed as the author. However, I want to stress that the writing of this document was a collaborative effort, lasting nearly a year and a half, and involving the input of many parents, parent groups, physicians, nurses, social workers, attorneys and ethicists from around the country, and indeed, from around the world.
I became involved in issues of parent empowerment in neonatology over two decades ago when our son, Edward, was born 3 months prematurely in 1975. Soon afterward I began writing The Premature Baby Book (2) which is now in its 15th printing, and I am currently at work on a new edition. Fifteen years ago I was one of the founding members of Parent Care, an international support organization for parents of high-risk infants. I am currently active in similar parent and professional groups and in a variety of projects in neonatal research and education. In each of these capacities I've come to know hundreds of families of critically ill newborns.
Many of these parents express unqualified gratitude for the skilled staff and new technologies that saved their babies'
lives. Many others, however, are unhappy about the way they and their babies were treated in the intensive care unit and beyond.
These parents tell of difficulties obtaining accurate information about their babies' condition, treatment, and prognosis and of being excluded from medical and ethical decision-making.
They're disturbed by what they see as the overtreatment of marginally viable babies and the undertreatment of pain.
They're worried about the safety of neonatal therapies and about the effects of the nursery environment.
They want better follow-up studies to give them an idea of what the future might hold for their children.
Above all, they want doctors, politicians, and the public to recognize the suffering that can result from the aggressive medical rescue of marginally viable babies, especially in the absence of adequate services and on-going care.
In 1991 I began sending letters and articles some of these parents had written me to Dr. Jerold Lucey, the editor of Pediatrics. Dr. Lucey was so disturbed by what he read that he proposed a conference in which parents and physicians could meet and discuss the problems these parents had described. While Dr. Lucey selected a group of distinguished neonatal professionals to attend the conference, I began assembling a group of articulate parents who were knowledgeable about neonatal intensive care from personal experience and from their work in support organizations, disability rights groups, and hospital ethics committees.
To serve as the basis for our conference discussions we parents created a draft of the Principles for Family-Centered Neonatal Care that identified our personal concerns and those we heard most frequently from other families.
The conference was held in Burlington, Vermont in 1992 and was sponsored by Ross Laboratories. One important result of that conference was the publication of our article a year later in Pediatrics.
Both in the parent-drafted principles and in the conference deliberations in Vermont the issue that stood out was the need for parents to become better informed and empowered to make decisions on behalf of their infants.
To better illustrate why parents feel this is an important problem, I'd like to quote from some of the documents I sent to Dr. Lucey. The first was written by Sarah Thorson of Minneapolis, MN.
Sarah is a social worker who was employed finding placements for severely handicapped NICU survivors when, ironically, she found herself in the midst of a high-risk pregnancy. She writes:
"In January 1987 I was 21 weeks into a
triplet pregnancy and in labor. My husband
asked the perinatologist about our options.
'You don't have any options,' the doctor
replied.
"It was a lie that we had no options, but
we didn't know it at the time. Horrible as
it sounds, abortion would have been an option.
I don't know if that's what we would have done,
but the decision should have been ours."
The triplets were born several weeks later, extremely prematurely, and were treated with surfactant. Nevertheless, within 24 hours of delivery, one of the babies was hemorrhaging severely into his lungs and brain. Sarah approached the doctor:
"I gathered every ounce of courage I had to
ask the question I thought any responsible,
loving parent would ask: 'At what point do we
say enough is enough for this little boy?'
"The neonatologist answered, 'You don't make
those decisions! We do!'"
Soon all three boys had suffered severe grade IV brain hemorrhages. When the Thorsons asked the doctors what this meant, they were given falsely optimistic information:
"We were led to believe that 80% of children
with grade IV bleeds turn out fine."
The Thorsons, who come from a family of medical professionals, soon learned the truth about IVH morbidity and asked to speak to the hospital's ethics committee. The nursery staff refused this request and labeled the Thorsons as "bad parents" for questioning the use of life-support for their children. When Sarah expressed concern about taking home three medically fragile babies, she was told by the neonatologist:
"If you can't manage, you can give the babies
up and put them in foster care."
This response, says Sarah, showed the doctor not only to be shockingly insensitive, but also shockingly ignorant of the world outside the NICU. She writes
"As a county social worker, I had spent the
better part of the previous year developing a
placement for a youngster whose problems
weren't nearly as serious as those of my
children. This placement outside an
institutional setting was so unique that it
made the local papers. It also cost $300 a
day."
The Thorson triplets survived with severe on-going health problems and handicaps, including cerebral palsy, retardation, hydrocephalus, seizure disorders, chronic lung disease, and blindness. The Thorsons care for their children at home between their numerous rehospitalizations. This has taken a dreadful toll on them and their family, but their marriage and sanity have survived so far. Many other families I hear from in similar situations are not so lucky.
Fortunately, not every physician and hospital treats parents as callously as the Thorsons were treated but, unfortunately, parents have no way of knowing in advance about philosophies of care which can vary widely from one hospital to the next and from one doctor to the next. For example, I recently received a call from Wanda Boggs, a mother in Milwaukee, who had just given birth to 23-week-gestation twins. Here's what she had to say:
"We weren't told about our son's devastating intraventricular hemorrhage until a week after
it occurred and then only because we had begun
to ask some very pointed questions."
The only reason the family knew to ask questions was that a nurse hinted to them that they weren't being told something important. "When we asked about the consequences of
such a severe bleed we were told that our son
might have problems in math later on.
Meanwhile, a neurologist was writing in the
chart that a likely outcome was a persistent vegetative state."
When Mr. and Mrs. Boggs learned the truth by surreptitiously reading the chart, they asked that their son be taken off life support. The neonatologists refused. With the help of a parent support group and numerous cross-country phone calls, the family reached an ethicist in Hawaii who referred them to a neonatologist at a neighboring hospital in Wisconsin. This neonatologist felt the parents' request was entirely appropriate, and he agreed to admit the baby to his unit. Only then did the original neonatologists give in and allow the baby to be taken off the respirator where he died quickly and peacefully in his parents' arms.
However, without this type of informed and empowered parental advocacy, critically ill babies all too often become the unprotected targets of medical activism and overtreatment. A mother in New Jersey recently wrote to me describing the death of her son after six months of aggressive treatment given against the parents wishes. She wrote:
"What my son went through in six months I
will never forget as long as I live . It was
torture, cruel and inhumane, all for a terrible proposed outcome."
Families who contact me frequently tell of being denied information and options. And researchers who have studied parent/staff relationships in the NICU confirm what these parents are saying. These include such classic studies as the one by Robert Bogdan and his coworkers at Syracuse University (3); the international investigations of NICU care by Jeanne Guillemin and Linda Holmstrom (4), sociologists at Boston College; and the research of Rene Anspach (5), Associate Professor of Sociology at the University of Michigan. This is just a partial list of many studies from many disciplines and locales. These studies find that information given parents in the NICU often consists of euphemisms and half-truths and that parents are usually not informed about major uncertainties surrounding their babies' care.
Dr. Carol Rottman at Case Western Reserve studied the parents' role in decision-making for babies below 1000 grams(6). Here is what she found:
"At three junctures of moral decisions, i.e. resuscitation, treatment planning, and
withdrawal of treatment...parents were either
not invited by physicians to participate, or [were] influenced in their choices by selectively presented information."
Dr. Rottman concluded:
"Parents are unequal partners with physicians
because of limited access to medical
information."
All too often, parents come into the NICU with no information beyond the miracle baby stories they've heard in the media, stories for which neonatology itself must bear some responsibility. In the words of one neonatologist (7):
"Press reports of the 'world's smallest baby'
without followup or appropriate discussion of
problems, costs (financial and emotional) do
nothing but create unreal expectations in
parents and families. Physicians who compete in
the lay press contribute to misunderstanding, malpractice and increased costs."
As neonatologist Mildred Stahlman has stated (8):
"We [neonatologists] have allowed the media
to publicize our successes widely and have
minimized our failures to the public."
Furthermore, when parents enter the NICU with unrealistic expectations NICU staff are rarely enthusiastic about correcting them. Hopeful parents are much easier to manage. Also, some caregivers feel that hope -- not just for the baby's survival but also for a normal outcome -- is essential to the bonding process. Any information that might compromise that hope is, therefore, avoided. But whether the motives of the staff are self-protective or protective of the parents, or a bit of both, physicians and nurses often leave parents essentially in the dark as to what is going on with their baby or what the outcome is likely to be.
Writing in the Hastings Center Report , Nancy King, Assistant Professor in the Department of Social Medicine at University of North Carolina, describes the many parent-staff discussions she witnessed during a two year observational study (9). She states:
"I listened to many discussions with parents
with a pervasive sense that something crucial
was being left out of all of them. What I saw
as missing was the link between information
disclosure and parental understanding of the implications...either immediately or in the
long term.... [Parents] were not told or did
not know how to ask what their child's
condition meant."
In addition, parents may quickly learn that asking too many questions is hazardous to their well-being in the NICU. Parents who are brave enough to question their child's treatment may be threatened with being taken to court and losing custody of their child. Parents who are well-educated or confident enough to ask questions or challenge aspects of medical or nursing care may be rewarded with bad psychosocial write-ups in the chart where they are dismissed as "psychologically disturbed," as "angry," "hysterical," or "suffering from bonding disorders."
For example, in 1986 Jill Lawson, a mother in Silver Spring, Maryland, discovered that her premature son Jeffrey had undergone an hour and a half of open chest surgery without anesthesia or any other form of pain relief. When she confronted the physicians, she was told that extremely premature babies such as her son are too immature to feel pain and too fragile to be anesthetized. When she refused to accept this explanation, she was told to get psychological counseling for her "inappropriate grief response." Instead, Mrs. Lawson took her story to The Washington Post (10). She was quickly joined by parents around the country who discovered that their children had also undergone unanesthetized surgery. I was one of those parents. Together we were instrumental in bringing the issue of infant pain to public attention.
Within months of The Washington Post article, the Lancet (11) and The New England Journal of Medicine (12) rushed into publication research by Dr. Sunny Anand ( research that had been around for some time) on the adverse effects of unrelieved pain in neonates.
In the past few years anesthetics and analgesics have become more widely used in the NICU, but surveys show that premature infants in intensive care are still greatly undermedicated for pain compared with older patients (13,14). And from the comments I hear at conferences there is still considerable medical doubt about whether premature babies, especially the smallest and sickest of these babies, can be safely medicated for pain.
At the Vermont conference, Dr. William Silverman, one of the physician participants, made the following comments on the ethical issues raised by the pain of neonatal intensive care:
"As a matter of common decency parents must
be informed that at the present time
neonatologists do not know how to control much
of their babies' pain. Parents must be told
about this deficit in medical knowledge if
they are to participate in the process of informed consent...the pain these babies (and
families) suffer is the most important issue."
Many of us would agree with Dr. Silverman. We see pain as a moral as well as a medical issue. We want to be informed on a continuing basis about pain and pain relief issues and we want to be the ones to decide how much medical pain our babies are forced to endure.
Closely related to the issue of pain are concerns about the often relentless nursery environment. Many of us are worried about the constant exposure of our babies to bright fluorescent light, noise, sleep deprivation and uncomfortable positioning and handling.
We would also like to see changes in nursery policies. Many of us have expressed frustration at a rotation system that encourages discontinuity of care; a system in which the ethical, medical and parenting decisions carefully negotiated with one set of caregivers can be overturned with every change of shift. Mothers want more support for lactation and breastfeeding. Parents want nursery policies and attitudes that promote parent/infant contact, and sensitive, individualized developmentally appropriate care for their babies.
Parents are also worried about the safety of neonatal treatments, and, through the Internet, many of us are becoming increasingly aware of such problems as the toxic aluminum levels in TPN (intravenous feeding solution) (15), or the risks posed by the use of pre- and postnatal steroids (16,17,18,19).
Twelve years ago the National Institute for Child Health and Human Development -- the NICHD -- described neonatal care (20) as
"...often based on limited knowledge of new modalities not subjected to critical studies
prior to introduction and acceptance.... [where] therapeutic interventions may change within
months before adequate studies of safety and
efficacy are initiated, much less completed."
More recently, a survey was carried out to compare data about caregiving and outcomes from a network of hospitals around the United States (21). The researchers found: "important intercenter variation...in
approaches to care...in philosophy of care...
and prevalence of morbidity."
Important variations in care included:
-- delivery room care of extremely premature babies
-- oxygen administration
-- use of the ventilator
Important variations in philosophy included:
-- Aggressiveness of delivery room care for infants <750 grams
-- Discretionary use of assisted ventilation
Important variations were also found in rates of:
-- Chronic lung disease
-- Necrotizing enterocolitis
-- Sepsis
-- IVH and PVL
The authors concluded:
"The variability of care provided in neonatal centers...raises important questions about
current regimens of neonatal care...."
They further concluded:
"the practice of neonatal medicine remains in
part an art rather than an exact science."
Dr. Jeffrey Maisels, a world-renowned neonatologist who practices here in Michigan, has put it even more bluntly (22). At a conference in 1993 he described intensive care for preterm low birth weight neonates as
"a vast uncontrolled experiment undertaken without informed consent and with possibly undesirable results."
Parents who are aware of this situation feel strongly that proper evaluation of current regimens of care should take precedence over further efforts to challenge the frontiers of viability. They want to be told of the evidence supporting therapies and be told of the possible risks and benefits, both in the context of declared experimentation and in the context of standard care.
Many of us worry, unduly in my opinion, about those situations in which we are asked sign consent forms to enroll our children in controlled clinical trials. Despite our worries, researchers have shown that babies in declared, approved experiments of this type have better outcomes than babies not enrolled in trials, regardless of whether the baby is assigned in the trial to the experimental group or the control group (22). This is probably because babies in trials get more careful caregiver attention. Uninvestigated or poorly investigated aspects of standard care are what should concern and frighten us.
And to the extent that neonatology remains "an art rather than a science," many of us feel that our own aesthetic and ethical tastes should be consulted.
Another area that troubles many parents is follow-up or rather the lack of it. Because our children are part of a population that has never before survived, and because they have been exposed to a multitude of innovative and experimental treatments, we believe it is imperative that neonatal units study the outcomes and publish the data. However, a recent meta-analysis of English language follow-up studies indicates that only a tiny fraction of prematurely-born children receive such follow-up. The meta-analysis also found numerous flaws in existing studies that tend to bias them toward optimism including the fact that most follow-up ends at ages one or two, far too soon to diagnose most disability (24, 25). I know that some of you here today can relate to this account of preterm infant follow-up given by Suzanne Calvello a mother in Westchester County, New York:
"When Natalie was two, I was asked to bring
her back to the NICU for a follow-up study. At
the time, she was being treated for cerebral
palsy by a world-famous neurologist; for a
heart defect by a cardiologist; for visual
defects by a pediatric ophthalmologist; for ear and throat problems by an ENT; for chronic
pulmonary disease by a pediatric pulmonologist;
for immune deficiencies by an infectious
disease specialist; and for orthopedic problems
by a pediatric orthopedist. She was also
receiving speech, physical, and occupational therapy. However, for the purposes of the NICU
follow-up study she was declared NORMAL!"
We, as parents, need meaningful, unbiased information about what happens to babies who leave the NICU, not just in infancy, but at school age, adolescence, and adulthood. We parents and our pediatricians need this information to understand and cope with the puzzling array of health and developmental disorders common in our children. Also, school systems and social service agencies need to know the scope of the resources they will be asked to provide as our babies grow to school age and into adulthood. Above all, parents need the results of such studies if they are to give their truly informed consent to neonatal treatment. The lack of follow-up and the lack of medical and societal follow-through in terms of a genuine commitment to the survivors of neonatal care is a source of great anguish to many families.
Of particular concern to families are questions about therapy and early intervention. New parents, and the neonatal staff who advise them, place a good deal of hope in the promise of early interventions to help make these very high-risk children normal. However, a growing number of burned-out, disillusioned parents believe the time has come for all of us to honestly acknowledge the demonstrated lack of benefit from the currently available therapies and programs.
Some of you may be familiar with the Infant Health and Development Program, a 35 million dollar multi-center randomized controlled trial to assess the effects of intensive early intervention from birth to age. The outcomes at eight years of age were published last year (26), and they are not good. Despite three years of intense intervention costing over $15,000 a year per child, there were no differences among the very low birthweight children who did or did not receive early intervention either in IQ, in need for special ed, in grade retention, in behavior problems or in any other outcome that was measured. Mean IQs were low in both groups and the incidence of school failure and behavioral problems was high.
Slides:
Infant Health and Development Program
--874 LBW children
--336 enrolled in intensive early
intervention from birth to age 3
--8 sites around the US
--$15,146 cost per child per year


Results at age 8 for children with <2,000 g BW
Intervention Group IQ Control Group IQ
88.3 89.5
No differences in: special ed, grade
retention or behavior problems.
Parents and the public must be made aware of these facts.
Parents and the public must also be told that randomized controlled trials (27, 28) have failed to find any benefit in the use of physical therapy to enhance development or to prevent or remediate cerebral palsy.
Clearly, services and therapies are not going to solve the problems of many of our children. In addition, new parents, physicians and society at large must recognize that the day-in day-out suffering of severely-impaired, chronically ill children simply can't be helped by more money or more programs.
In 1981, my friend Shay Eikner of Denver, Colorado gave birth to premature twins. Both suffered grade IV brain hemorrhages. Mrs. Eikner asked that her son Joshua, the more severely afflicted twin, be removed from life-support. The neonatologists refused. The Eikner twins eventually came home from the hospital with multiple disabilities. Joshua's childhood, especially, was marred by constant medical problems. In 1989, he underwent a hemispherectomy in which half of his brain was removed to correct an intractable seizure disorder. Joshua developed hydrocephalus as a result of the surgery, and shunt infections became a repeated and excruciatingly painful problem for him. After 20 shunt revisions in the period of 22 months, Joshua lapsed into a coma and died. Mrs. Eikner recalls her son's life:
"During the ten years between Josh's birth
and death, it seemed as if the doctors were
slowly chipping away at his body and his
spirit."
Surgery piled upon surgery many simply an attempt to fix problems caused by the previous treatment.
"During those ten years," says Mrs. Eikner,
"what stands out are the constant battles to
find Josh help and treatment. As his care
became more difficult and unsuccessful, much
of the medical community backed away in
frustration.
"Believe me, I felt the frustration too, but
I spent the endless nights holding him while he
cried in pain and asked me to make the hurt go
away. My greatest fears from ten years ago were realized: that in spite of all the love and
nurturing we gave Josh, we could never take
away the pain or make him well."

There are many of us out there, my own family included, whose time in neonatal intensive care was merely a prelude to a lifetime of similar medical ordeals. We want neonatologists and the public to know what such a life is like for our children and for us.
In "The Principles for Family-Centered Neonatal Care," we parents attempted to address these issues by endorsing genuine collaboration between families and caregivers in all aspects of neonatal care.
Because knowledge is power, and because information is crucial to genuine collaboration and informed choice, almost all of the Principles deal either directly or indirectly with the issues of communication and informed consent.
Accurate communication should begin in the media with parents and physicians presenting a more sober and realistic appraisal of what neonatal medicine can and cannot do. Long term outcomes and costs to the family and society must be recognized, along with the failure of current remediation programs.
Realistic discussions of prematurity should be part of every high school sex education or family life class, and prematurity and other adverse pregnancy outcomes should be thoroughly discussed as part of all routine neonatal care.
Expectant parents should be able to know "up front" about the policies of NICUs in their area. Do they automatically resuscitate all babies, or do they allow parental decision-making at various gestational ages? Do they practice developmental care? Do they have lactation counselors? Are parents included in rounds?
Parents want very much to know what to expect if their baby is born at a given gestational age. Parents on preemie-list have been enthusiastic about a chart of what to expect at various gestational ages developed by neonatologist Guan Koh of Australia, Colin Morley in the UK, and myself. We have submitted this chart for publication and hope to encourage its use both as a part of prenatal and post natal parent-physician discussions.
Once in the NICU, parents need unrestricted access to the same information as the staff. Parents should be invited, not just allowed, to read the medical chart and participate in rounds discussions of their babies. Ideally parents would also be invited to write in the chart themselves, and to have copies of all major documents that go into their child's chart.
Each NICU should find a way to provide a library where parents have free and uncensored access to medical texts and journals, Internet access, and informational tapes and videos. Access to other parents whose children have undergone similar experiences should be available through hospital and community support groups and through the Internet.
Parents must have access not only to the same facts as the staff but also to the same meaning and interpretation of those facts. When communicating with parents, staff should always keep in mind that they may be using terms in ways that are totally misunderstood by people outside their profession. I'm not talking about medical terminology here, I'm talking about words like "resolved" or "normal." To parents the term "normal" usually means "unaffected by prematurity, that their baby will be restored to the condition he would have been in if born at term." To the physician quoting follow-up studies "normal" may simply mean: ambulatory with an IQ of over 70.
The word "resolved" used in reference to brain hemorrhages often gives parents the false impression that all is now well and there is no further need to worry. Parents must be given the same understanding of such terminology as the staff.
A good way to help give the facts meaning is by audio taping all important parent-staff conferences and giving the tapes to the parents to play at home in a calmer moments (29). Most of us can testify to the fact that it is very hard to hear what is being said in such conferences as your life and your baby's life are flashing before your eyes. At home, in private, it is easier to listen carefully, digest what is being said, and formulate follow-up questions.
Continuity of care in the form of primary care nursing and through "patient attending" rotations by physicians (rather than "service attending" rotations) would help assure the continuity of information to parents. But within the context of continuity of care, we parents must still have the opportunity to be exposed to any significant differences in medical or ethical opinion among the staff or within the medical community in general.
Videos can be particularly powerful tools for presenting concrete realities. The CBS program 48 Hours recently did a series on extremely low birth weight babies who had beaten the odds and survived. A segment shown in 1995 (30) showed the "miracle babies" several years after their triumphal discharges from the NICU. The children's outcomes were now becoming evident. A friend of mine who works with mothers in preterm labor said the impact of this segment on the hospitalized mothers was profound. They became very angry that no one had informed them of these outcome possibilities. It is important that such realistic information be presented to expectant parents to allow them to participate in genuine informed consent and to allow them to prepare for the major life changes that inevitably occur with the birth of an extremely premature baby.
I also want to suggest that experienced parents, particularly those with scientific or medical backgrounds, serve on Institutional Review Boards that approve neonatal research projects and they be invited to serve as consultants on research projects. Veteran parents should be able to volunteer in the NICU to help in the development of educational materials for new parents and to help train the staff in communication techniques.
Finally I would like to suggest that parents become involved in efforts, such as those currently underway in Colorado (31) and Wisconsin (32), to create guidelines that would allow parents choices about whether or not to pursue aggressive neonatal care in those situations in which the pain and difficulty of treatment is high and the likelihood of intact survival is poor.
Some of you have tried to work with your hospitals on such issues only to brushed aside, and I know you are feeling discouraged about your ability to bring about change. However, many important changes in neonatal care have been made by committed, persistent parents. I have already mentioned Jill Lawson, who despite enormous opposition from the medical community, brought her message about infant pain to the public and revolutionized practice in neonatal and pediatric pain relief. I'd also like to cite the example of Helen and Jerold Kushnick, NICU parents who first made the public aware of the dangers of transfusion-borne HIV after their prematurely born son died from AIDS contracted in the NICU (33). As with Jill Lawson, the Kushnicks were also initially rebuffed by the medical community. But they persevered to see their reforms enacted. In the words of Dr. Arthur Ammann (34), a leading expert on blood-borne AIDS:
"The Kushnicks have done more than those of
us in the medical community to reform blood
collection and transfusion policies. There are
babies alive today who would never have survived without the efforts of Helen and Jerry
Kushnick....They have shown that persistent individuals can bring about major positive
change."
There are many other NICU parents, some here in this audience, whose persistent efforts are helping to reform nursery policies, to bring developmental care and kangaroo care into their units, and to begin and maintain support groups in their hospitals, communities and on the Internet. I'd particularly like to single out and thank Anne Casey and Gary Hardy, founders of Preemie-List and Elaine and Timothy Sayers, founders of the Alexis Foundation. It is because of their commitment and dedication that we are here today for the first of what I hope will be many such international conferences.
I'd like to conclude by quoting the words of anthropologist Margaret Mead (35):
"A small group of thoughtful people could
change the world. Indeed, it is the only thing
that ever has."




REFERENCES


1. Harrison H. The principles for family-centered neonatal care. Pediatrics. 1993;92:643-650.

2. Harrison H, Kositsky A. The Premature Baby Book . New York, NY: St. Martin's Press, 1983.

3. Bogdan R, Brown MA, Foster SB. Be honest not cruel: Staff/parent communication on a neonatal unit. Hum Organ. 1982;41:6-16.

4. Guillemin JH, Holmstrom LL. Mixed Blessings: Intensive Care for Newborns. New York, NY: Oxford University Press, 1986.

5. Anspach RR. Deciding Who Lives: Fateful Choices in the Intensive Care Nursery. Berkeley, CA: University of California Press, 1993.

6. Rottman CJ. Ethics in Neonatology: A Parents' Perspective. Cleveland, OH: (thesis) School of Applied Sciences, Case Western Reserve University, 1985.

7. Sanders MR, Donohue PK, Oberdorf MA, et al. Perceptions of the limit of viability: Neonatologists' attitudes toward extremely preterm infants. J Perinatol . 1995;15:494-502.

8. Stahlman MT. Ethical issues in the nursery: Priorities versus limits. J Pediatr. 1990;116:167-170.

9. King N. Transparency in neonatal care. Hastings Center Report. May-June 1992:18-25.

10. Rovner S. Surgery without anesthesia: Can preemies feel pain? Washington Post Healthtalk . August 13, 1986:7-8.

11. Anand KJS, Sippell WG, Aynsley-Green A. Randomized trial of fentanyl anesthesia in preterm babies undergoing surgery: Effects on the stress response. Lancet. 1987;1:62-66.

12. Anand KJS, Hickey PR. Pain and its effects in the human neonate and fetus. N Engl J Med. 1987;31:1321-1329.

13. Anand KJS, Selaniko JD, and the SOPAIN Study Group. A prospective survey of postoperative analgesic practices in neonates. Pediatric Research . 1996;39:191A, abstract #1134.

14. Anand KJS, Selaniko JD, and the SOPAIN Study Group. Routine analgesic practices in 109 neonatal intensive care units (NICUs). Pediatric Research . 1996;39:192A, abstract #1135.

15. Bishop NJ, Morley R, Day JP, Lucas A. Aluminum neurotoxicity in preterm infants receiving intravenous-feeding solutions. N Engl J Med. 1997;336:1557-61.

16. French NP, Hagan R, Evans S, et al. Repeated antenatal corticosteroids: Behaviour outcomes in a regional population of very preterm (<33w) infants. Pediatric Research. 1998;43:214A, abstract # 1252.

17. Hack M, Friedman HG, Minich NM. Antenatal steroids have not improved the outcomes of surviving extremely low birth weight infants [<750 g]. Pediatric Research. 1998;43:216A, abstract #1264.

18. Yeh TF, Lin YJ, Lin CH et al. Early postnatal (<12 hrs) dexamethasone therapy for prevention of BPD in preterm infants with RDS -- A two year follow-up study. Pediatric Research. 1997;41:188A, abstract #1115.

19. O'Shea TM, Kathadie JM, Goldstein DJ, et al. Effect of a 42-day tapering course of dexamethasone on outcome at one year of age in very preterm infants. Pediatric Research . 1997;41:207-A, abstract #1230.



20. Request for Cooperative Agreement Application RFA-NICHD-85, National Institute of Child Health and Human Development. Title: Cooperative Multicenter Network of Neonatal Intensive Care Units. Application receipt date: June 14, 1985.

21. Hack M, Horbar JD, Malloy MH, et al. Very low birth weight outcomes of the National Institute of Child Health and Human Development Neonatal Network. Pediatrics. 1992;87:587-597.

22. Browne SJ. Neonatal intensive care: Life at what cost? Pediatric News. January 1993:1, 26.

23. Schmidt B, Gillie P, Caco C, et al. Do sick newborn infants benefit from participation in a randomised clinical trial? Pediatric Research . 1998;43:31A, abstract #168.

24. Escobar GJ, Littenberg B, Petitti DB. Outcome among surviving very low birthweight infants: A meta-analysis. Arch Dis Child. 1991;66:204-211.

25. Escobar JG. Prognosis of surviving very low birthweight infants: Still in the dark. Br J Obstet Gynaecol. 1992;99:1-3.

26. McCarton CM, Brooks-Gunn J, Wallace IF, et al. Results at age 8 years of early intervention for low-birth-weight premature infants: The Infant Health and Development Program. JAMA.
1997;27:126-132.

27. Palmer FB, Shapiro BK, Wachtel RC, et al. The effects of physical therapy on cerebral palsy: A controlled trial in infants with spastic diplegia. N Engl J Med. 1988;318:803-8.

28. Rothberg AD, Goodman M, Jacklin LA, Cooper PA. Six-year follow-up of early physiotherapy intervention in very low birth weight infants. Pediatrics . 1991;88:547-552.

29. Koh THHG, Jarvis C. Promoting effective communication in neonatal intensive care units by audiotaping doctor-parent conversations. Int J Clin Pract. 1998;52:27-29.

30. Million Dollar Babies. 48 Hours. July 6, 1995.

31. Colorado Collective for Medical Decisions. Guidelines for the management of low birth weight/early gestational age newborns (23-26 weeks, 400-750 grams). 3/20/97. (Available from CCMD, 7 Grant Street, Suite 206, Denver, CO 80203; (303) 832-3002.)

32. Wisconsin Association for Perinatal Care. Position Statement; Guidelines for the responsible utilization of neonatal intensive care (Draft). 9/19/97. (Available from Wisconsin Association for Perinatal Care, McConneil Hall, 1010 Mound Street, Madison, WI 53715; (608) 267-6060.)

33. Chase M. Gift of life may be agent of death in some AIDS cases. The Wall Street Journal . March 12, 1984:1.

34. Harrison H. Losing a child to AIDS: How one family coped with a medical nightmare. Twins. Sept-Oct, 1985.

35. Mead M (in The Utne Reader 1992) as quoted by Maggio R in The New Beacon Book of Quotations by Women . Boston, MA:Beacon Press, 1996, 7:14.

Return to Preemie-l Conference Reviews, Papers || Return to Preemie-l Home Page