bluuebunny/crossref_metadata_2025_split huggingface dataset:
Infants and Children With Acquired Immunodeficiency Syndrome: Placement in Adoption and Foster Care
Authors:   TASK FORCE ON PEDIATIRC AIDS
Published: December 2021

The transmission of human immunodeficiency virus (HIV) from infected mothers to their infants has been well established. The majority of infants so infected are born to women who have acquired HIV through IV drug use or through sexual contact with IV drug-using partners. Some of these mothers are unable to care for their infants. In addition, many infected mothers become seriously ill or die, leaving children who must be cared for by others. Thus, many infants and children who are infected or are at high risk for infection may require placement in an adoptive or foster care setting. The HIV-infected infant or child places a serious burden on any family. This burden, when anticipated, may make adoption and foster care placement exceedingly difficult. However, such family-based care is clearly in the best interest of the child.
CARE FOR THE CHILD WITH ACQUIRED IMMUNODEFICIENCY SYNDROME (AIDS)
If an infant or child is known to be infected with HIV or is already ill with AIDS, what are some of the implications for the care givers, including adopting or foster cane families?
First, the family must bear the physical and emotional burden of caring for a child who will require ongoing medical treatment, will suffer from intermittent bouts of increasingly severe illness, and, in most cases, will ultimately die. A majority of these children can be expected to have developmental delay and many may also show behavioral regression, resulting in increased care-giving demands.
A second issue is the fear of spread of the viral infection to family members, friends, and classmates.
In Reply: Newborn Screening for Sickle Cell Disease
Authors: VICHINSKY ELLIOTT 
Published: December 2021

We thank Dr Gross for his comments and the opportunity to clarify the points he has raised. Our study is based on a retrospective comparison of the clinical course of patients with sickle cell diagnosed at birth with that of patients whose disease was diagnosed during infancy as a result of clinical complications. We recognize the limitations of this retrospective comparison. However, a prospective study comparing these two groups would be impossible and perhaps unethical to perform.
Specifically, Dr Gross' concerns include (1) both groups should have equally benefited from comprehensive care once diagnosis was established; (2) there was a bias in favor of a lower mortality rate in the newborn screening group; (3) confusion concerning calculation of mortality rates.
In Reply: Brain Lesions and Extracorporeal Membrane Oxygenation
Authors: SCHUMACHER ROBERT E. , BARTLETT ROBERT H. 
Published: December 2021

Dr Short is correct; the only way to determine the actual incidence and, significance of brain lesions in patients who have undergone extracorporeal membrane oxygenation (or any other group of neonatal patients) is to study the entire population. We previously reported our complete follow-up studies on 14 patients post-extracorporpeal membrane oxygenation older than 1 year of age, and we are in the process of updating complete follow-up studies.
The purpose of our recent paper was only to report that we have observed some cases of right-sided brain ischemia following extracorporeal membrane oxygenation, particularly in patients who were profoundly hypoxic and hypotensive at the time of cannulation.
The Anencephalic Controversy
Authors: WYATT P. R. 
Published: December 2021

The discussion in a recent issue of Pediatrics by Landwirth, Botkin, and Milunsky (August 1988) regarding harvesting organs for transplantation from anencephalic infants simply summarizes the recent and dramatic changes that have occurred in clinical medicine. We have reached the point in medicine where we must reevaluate our definitions of both life and death.
The significant changes in both clinical and diagnostic services available to physicians in the past decade, and future decades, will substantially change the practice of clinical medicine.
Hemorrhage, Phenobarbital, and Fluctuating Cerebral Blood Flow
Authors: PERLMAN JEFFREY M. , VOLPE JOSEPH J. , ERNEST A. , STEIN JANE G. 
Published: December 2021

In the recent article regarding fluctuating cerebral blood flow velocity and the intraventricular hemorrhage in the neonate, the authors concluded "when the best 20 waves are chosen to evaluate the coefficient of variation, no association exists between the coefficient of variation values and development of subependymal-intraventricular hemorrhage...." Such a conclusion is clearly not justified based on the data presented.
First, the mean mode as was used in this study is an averaged frequency for a single cycle.
Macrosomia, Microphthalmia, and Early Rapid or Sudden Infant Death: A New Syndrome?
Authors: TEEBI AHMAD S. , FARAG TALAAT I. 
Published: December 2021

Macrosomia together with macroglossia and omphalocele permits the recognition of Beckwith-Wiedemann syndrome which is frequently observed in sporadic occurrence and occasionally as an autosomal dominant disorder. However, macrosomia may be also a part of several clinically recognizable overgrowth syndromes such as cerebral gigantism, Smith-Marshall syndrome, and Weaver syndrome.
Recently, we observed a female infant with macrosomia (birth weight 4,650 g, length 52 cm), bilateral severe microphthalmia, frequent cyanotic spells with apnea, and an early death at 43 days due to overwhelming illness.
HOW VALUABLE IS THE S.A.T.?
Authors: L. J. F. 
Published: December 2021

Most societies have some sort of rite of passage from childhood to adulthood. The aborigine in Australia send adolescents into the wilderness on a "walkabout." German noblemen prove their maturity by acquiring dueling scars.
Americans have one in which their young people spend three high-pressured hours filling in little boxes. Anthropologists call it "Taking the Scholastic Aptitude Test."
What do they measure? To anyone with lingering faith in Santa Claus, the Easter Bunny and truth-in-packaging, the answer is obvious: The Scholastic Aptitude Test measures scholastic aptitude. For that answer score zero.
The test was created in 1926, when people still believed that there was something called intelligence that experts could measure and put a number on. Scholastic aptitude was its academic counterpart.
Today no one believes that intelligence is that simple, and developers of the aptitude test have backed away from claiming to measure aptitude.
What does the test tell colleges? The College Board says the examination predicts college grades in the freshman year. The technical term is predictive validity, which is measured on a scale of zero to one. Zero means that the result would be as random as using a zip code. A perfect 1.0 means that everyone with high test scores will get high grades, everyone with low scores will get low grades and so forth.
Testmakers' research shows that college freshmen grades can be predicted with a validity of 0.42 based on the aptitude test, 0.48 based on high school grades and 0.55 if both are used. Since colleges already have students' grades, the incremental advantage of having the test scores is 0.07.
Do test scores change admissions decisions? In a new book, "The Case Against the S.A.T.," James Crouse and Dale Trushei.m of the University of Delaware argue that the test is "valid but redundant." They conducted their own studies and concluded that by using high school grades alone, they could come to the same conclusion as admissions directors in all but 3 percent of cases-not enough, in their opinion, to justify the whole enterprise.
UNEXPECTED INFANT DEATH AND ADVERSE SOCIAL STATUS
Authors: Student  
Published: December 2021

Families [in which unexpected infant death occurred during a minor illness] showed the most striking rise [in Sheffield] between 1980 and 1987 [and] had twice as many adverse social factors as controls. When we reviewed [these] deaths we found that many of the families in this group seemed to belong to a small subculture within which morbidity, poverty, excess smoking and alcohol consumption, and a fatalistic outlook predominate....
Many unexpected deaths in infants are multifactorial in origin; possibilities for prevention have social, political, and educational as well as medical implications.
Antenatal Transfers and Bronchopulmonary Dysplasia Incidence
Authors: SEPKOWITZ SAMUEL 
Published: December 2021

Hobar et al attempted to compare weight-specific neonatal mortality rates among 11 neonatal intensive care units. All patients were inborn. Finding a statistically significant variability of outcome among these neonatal intensive care units, after the effects of birth weight, gender, and race were considered and accounted for, the authors wondered whether other population variables might explain the differences in outcome.
One source of variability that would alter population risk among the neonatal intensive care units is patient selection by antenatal transfers into a referral center for delivery.
In Reply: Antenatal Transfers and Bronchopulmonary Dysplasia Incidence
Authors: HORBAR JEFFREY D. 
Published: December 2021

Dr Sepkowitz suggests that differences in patterns of antenatal transfers may account for center variations in neonatal outcome. He raises the question in particular with respect to Dartmouth and Northside Hospital, two centers included in our study. The outcomes at these centers do not support his argument. The two centers had identical predicted outcomes for both survival and survival without supplemental O2 after adjusting for the effects of birth weight, gender, and race.
Antenatal transfer is only one of many factors that may lead to population differences at neonatal intensive care centers.
Neonatal Testing for Sickle Cell Diseases—A Historical and Personal Review
Authors: Pearson Howard A. 
Published: December 2021

Testing for sickle cell hemoglobinopathies in the newborn period has gone through several distinct eras that reflect the diagnostic tests available during each period, as well as a changing clinical perception of the necessity and value of such screening for what is essentially an incurable disease (Table 1). From 1930 to 1950, pioneer investigators such as Diggs et al and Scott et al performed classical sickle cell "preps" in groups of black newborns. In the 1960s, investigators, notably Schneider et al and Gilman et al performed hemoglobin electrophoresis for large groups of newborns. However, these were research programs that had little or no clinical coordination or follow-up. In the 1970s, Serjeant et al in Jamaica and myself in New Haven, CT, set up programs of neonatal diagnosis coupled with careful long-term comprehensive follow-up. We are now in an era when neonatal screening for hemoglobinopathies has been recommended or mandated by a number of states.
The diagnosis of sickle cell disorders in the neonatal period is complicated because of the presence of large amounts of fetal hemoglobin (Hb F) at birth. Normal adult hemoglobin (Hb A) has two pairs of chemically dissimilar polypeptide chains designated α and β and can be represented as α2β2. Hb S has a pair of chemically altered chains and is designated α2β2s. Fetal hemoglobin, which constitutes 70% to 80% of the hemoglobin of the fetus and newborn, contains γ- instead of β-chains and can be represented as α2α2. γ-Chains are not affected by the sickle cell mutation.
Diagnosis at Birth Improves Survival of Children With Sickle Cell Anemia
Authors: Powars Darleen 
Published: December 2021

The increased survival of children who have sickle cell disease is primarily due to state-of-the-art improvements in general pediatric medical care with particular emphasis on the management of the infectious complications that occur. Studies reported from New York City, Los Angeles, New Haven, and Jamaica clearly demonstrate the calendar era change in survival that has occurred during the 1970s and 1980s, and the greatest improvement is found among those children who have sickle cell anemia. The accurate identification of the specific hemoglobinopathy at or near birth provided the foundation for these studies documenting infant and young child mortality.
In Africa, Molineaux et al and Fleming et al reported an epidemiologic investigation subsequent to a cord blood diagnosis program initiated in Garke, Nigeria, in 1976. A total of 534 infants were screened for major hemoglobinopathies, and 11 babies with SS and 125 babies with AS were identified. Minimal medical care was available for follow-up of the children. On entry to the school program at 5 years of age, the same population from the same small rural town was restudied. Only one child of 439 was found to have sickle cell anemia but 133 were AS. The inescapable conclusion was that the African babies with SS had died during early childhood, contributing disproportionate numbers to the high infant and childhood mortality in Nigeria. Not until Dr Fleming and the investigators of the British Medical Research Council had performed a cord blood hemoglobinopathy surveillance program was the incidence of sickle cell anemia and its effect on childhood mortality in Nigeria documented.
Usefulness of Cation Exchange High Performance Liquid Chromatography as a Testing Procedure
Authors: Huisman Titus H. J. 
Published: December 2021

Testing of cord blood or newborn blood samples for hemoglobin abnormalities should include clinically important hemoglobinopathies other than sickle cell anemia (SS), such as SC, SD, SO, S-β- thalassemia (thal), EE, SE, and α-thal, and should place the quality of the testing procedures (ie, accuracy of diagnosis) above quantity (ie, number of samples tested over a given period). There is no single method available that is suitable for the identification of each of the numerous abnormalities; thus, at least two, and often more than two, procedures must be used to reach a definitive diagnosis. For this reason, blood samples collected in vacutainers with ethylenediaminetetraacetic acid as anticoagulant are preferred to those collected on filter papers. The latter approach also has the disadvantage that, under a less than optimal transport system, hemoglobin is readily modified (oxidation, glycosylation, protein-protein interaction), producting extra bands or peaks in electrophoretic or chromatographic separations that interfere with an appropriate identification of various genetically determined hemoglobin variants.
In our laboratories, in which hemoglobin identification has been routine for more than 25 years, we consider the following procedures acceptable primary testing methods: starch gel electrophoresis at pH 8.9, cellulose acetate electrophoresis at pH 8.5 to 8.9, isoelectric focusing, and fast cation exchange high performance liquid chromatography (HPLC). The following five methods are excellent confirmatory testing procedures: citrate agar electrophoresis at pH 6.1, cation or anion exchange macrochromatography, isoelectric focusing, cation exchange HPLC, and immunologic procedures.
Combinations of these techniques will often lead to acceptable data, and the general approach followed in our institute is given in Fig 1. Cellulose acetate electrophoresis at alkaline pH is still the primary testing procedure, and citrate agar electrophoresis at pH 6.1 and micro-HPLC procedures are the main confirmatory methods.
Florida's Experience With Newborn Screening
Authors: Mack Astrid K. 
Published: December 2021

Cord blood screening of newborns for sickle cell disease was initiated in Florida at the Miami Sickle Cell Clinical Center in 1979 as a part of its participation in the national Cooperative Study of Sickle Cell Disease. Funding for newborn sickle cell screening in Florida began as a pilot project with a line-item appropriation in fiscal years 1983/84, and this funding for the three medical schools (University of Florida, University of Miami, and University of South Florida) continues to the present. During fiscal year 1984/85, a contract was negotiated between the University Hospital at Jacksonville and the local Children's Medical Services' office for the provision of newborn sickle cell screening. This contract has been renewed each year to the present.
The primary objective in each of these programs is to identify babies with clinically significant hemoglobinopathies and to offer the services of the institution's pediatric hematology division. Additionally, education, genetic counseling, family studies, and appropriate referrals are provided for all babies found to have any hemoglobinopathy and for their family members.
Initially, at the University of Miami, cord blood specimens were obtained at the time of delivery from at-risk (mostly black) mothers from whom informed consent had been obtained during a visit to one of several prenatal clinics associated with the University of Miami/Jackson Memorial (UM/ JM) Medical Center. It was soon discovered that many at-risk expectant mothers did not attend a prenatal clinic before their babies were born. Our internal review board did not consider consent "at delivery" informed consent.
Legal and Ethical Issues in Newborn Screening
Authors: Bowman James E. 
Published: December 2021

The development of techniques for newborn screening and for prenatal diagnosis of sickle hemoglobin and other hemoglobinopathies will have a profound effect on public health policy to a greater extent than did mass population testing that was initiated in the early 1970s. The subject of this conference is newborn screening; however, there is an old aphorism: "One cannot do one thing." Accordingly, when newborn screening for hemoglobinopathies is instituted on a large scale, the public policy consequences will extend far beyond newborn screening. We cannot anticipate all of the effects of such a policy, but some aftermaths may be predicted with near certainty. To understand the possible outcomes of a large-scale newborn screening program for sickle cell disease, some prior court and legislative decisions are pertinent.
Legislation, court decisions, state and federal genetics programs, and scholars in the social sciences, humanities, law, medicine, and genetics support discoveries in genetics that now facilitate genetic testing, prenatal diagnosis and selective abortion of fetuses with genetic and other disorders, artificial insemination, and in vitro fertilization. Arguments for and against these procedures are reminiscent of debates about the use of the limited tools of the old eugenics to prevent the birth of children who were considered to be physically, mentally, or socially defective.
Some examples of these court and legislative decisions follow: the Supreme Court verdict in Munn v Illinois established that the public interest supercedes the private interests of individuals; Buck v Bell, another Supreme Court ruling, upheld the constitutionality of mandatory sterilization.
Perspective From the National Association for Sickle Cell Disease
Authors: Whitten Charles F. 
Published: December 2021

It has been documented that infants with sickle cell disease are at risk of death in early infancy and that with appropriate services this risk can be minimized. Therefore, it should be a societal goal to give every infant with sickle cell disease in this country an opportunity to avoid a preventable death associated with the disease. I wish to present what, in my judgment, is required to achieve that goal and a brief rationale for each provision. These judgments are based upon 18 years of experience in designing and administering sickle cell service programs and 13 years of serving as president of a national sickle cell organization.
Every state must have a program designed to achieve the goal (currently only 13 states do) and the program must be underwritten by the state. Traditionally, the provision of personal health services has been considered a governmental responsibility when the following three conditions are met: the lack of services has dire consequences, effective services can be provided, and the solution requires a population approach. Sickle cell disease in infancy meets these criteria. The Government's responsibility is to provide or require the service and to provide or ensure financial support.
Each state's plan must require by state law that all at-risk newborns are tested. The various voluntary programs have been initiated, implemented, and nurtured by committed experts in large communities and their experiences cannot be generalized to small communities where devoted and skilled sickle cell leaders are not present. It should be optional for the various states to decide whether the law requires all newborns to be tested.
PUBLIC PRESENTATIONS
Authors: Henry Deborah D. 
Published: December 2021

I am the parent of an 11½-year-old daughter with sickle cell disease. I am aware of the need for a comprehensive newborn screening program for sickle cell disease and other hemoglobinopathies. However, all such programs must be instituted with a follow-up component, and parents should be made aware that such screenings are being done.
My daughter was born during the summer of 1975 in New York City. New York City began screening for sickle cell and similar hemoglobinopathies in May 1975, but had no comprehensive follow-up program until 1978. My daughter was not screened nor was I aware of the screening program. I learned of my daughter's condition during a routine well-child clinic visit when she was 6 months of age. I am afraid to think of her outcome had I not been taking her for preventive health care, because before the age of 1 year she experienced one of the most life-threatening crises of a child with sickle cell disease—splenic sequestration.
I am pleased to announce that in New York City today, parents are notified in a timely manner of their infant's newborn screening results with information regarding follow-up and counseling services. Two of my immediate family members gave birth to infants with sickle cell trait. They were informed of their infants' results within 2 weeks after their babies' births, and were given concrete information and recommendations for follow-up genetic services. I know a comprehensive newborn screening program will prevent mortality in infants found to have sickle cell disease and related hemoglobinopathies.