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ESHRE PGD Consortium data collection IV: May-December 2001.

The ESHRE PGD Consortium was formed in 1997 to survey the practice of preimplantation genetic diagnosis (PGD). Since then, three reports have been published giving an overview on PGD from an ever-increasing number of centres and reporting on an increasing number of PGD cycles and pregnancies and babies born after PGD. After these initial influential publications, important shortcomings were identified primarily on the method of data collection, i.e. with Excel spreadsheets, and in the timing of the collection (cycles were collected in a different time frame from pregnancies and babies, making the follow-up of cycles very difficult). This is why the Steering Committee has made a major investment in developing and implementing a new database in FileMaker Pro 6. It was also decided that cycles would be collected from one calendar year, as well as the pregnancies and babies ensuing from that particular calendar year. This gave us the opportunity to take a closer look at the data collected earlier, and to attempt to improve their quality. This is a report on the corrected data from the first three data collections (I-III) as well as the result of the last data collection (IV) that was completely carried out using the new database.

Data Collection↗

Detection of the "small for gestational age" fetus: comparison of a teaching hospital with field clinics.

INTRODUCTION: Low birthweight babies make a disproportionate contribution to perinatal morbidity and mortality. Antenatally they manifest as "small for gestational age" fetuses. Their detection is an important aspect of antenatal care. OBJECTIVES: To compare the effectiveness of antenatal detection of "small for gestational age", fetuses by a clinic in a teaching hospital and field clinics. DESIGN: Comparative descriptive study. SETTING: Professorial Obstetric Unit of De Soysa Maternity Hospital, Colombo. METHODS: Antenatal records of 67 consecutive women who delivered low birthweight babies at term were reviewed. Entries in the teaching hospital clinic records and the pregnancy record of the field clinics were studied. A deviation corresponding to more than two weeks' growth was considered significant. The period of gestation at which the deviation was first detected and any follow up action taken were noted. RESULTS: Of the total sample of 67 women 56 had also attended a field clinic. A significantly greater percentage of small for dates fetuses were detected by the primary care staff (71.4 vs 53.7%; p < 0.05). They also detected them earlier in pregnancy (26.4 vs 30.7 weeks; p < 0.05). However, referral for specialised care was arranged only in 32% by the field clinics. CONCLUSION: The detection rate of small for gestational age fetuses by staff of field clinics was close to the higher rates quoted in the literature. Only a minority of these fetuses were assessed further in both settings indicating a deficiency in antenatal care.

Ambulatory Care Facilities↗

Women's perceptions of iron deficiency and anemia prevention and control in eight developing countries.

The World Health Organization estimates that 58% of pregnant women in developing countries are anemic. In spite of the fact that most ministries of health in developing countries have policies to provide pregnant women with iron in a supplement form, maternal anemia prevalence has not declined significantly where large-scale programs have been evaluated. During the period 1991-98, the MotherCare Project and its partners conducted qualitative research to determine the major barriers and facilitators of iron supplementation programs for pregnant women in eight developing countries. Research results were used to develop pilot program strategies and interventions to reduce maternal anemia. Across-region results were examined and some differences were found but the similarity in the way women view anemia and react to taking iron tablets was more striking than differences encountered by region, country or ethnic group. While women frequently recognize symptoms of anemia, they do not know the clinical term for anemia. Half of women in all countries consider these symptoms to be a priority health concern that requires action and half do not. Those women who visit prenatal health services are often familiar with iron supplements, but commonly do not know why they are prescribed. Contrary to the belief that women stop taking iron tablets mainly due to negative side effects, only about one-third of women reported that they experienced negative side effects in these studies. During iron supplementation trials in five of the countries, only about one-tenth of the women stopped taking the tablets due to side effects. The major barrier to effective supplementation programs is inadequate supply. Additional barriers include inadequate counseling and distribution of iron tablets, difficult access and poor utilization of prenatal health care services, beliefs against consuming medications during pregnancy, and in most countries, fears that taking too much iron may cause too much blood or a big baby, making delivery more difficult. Facilitators include women's recognition of improved physical well being with the alleviation of symptoms of anemia, particularly fatigue, a better appetite, increased appreciation of benefits for the fetus, and subsequent increased demand for prevention and treatment of iron deficiency and anemia.

Adult↗

Predicting perinatal human immunodeficiency virus infection by antibody patterns.

The evolution of human immunodeficiency virus type 1 (HIV-1) antibody titers determined by enzyme-linked immunosorbent assay between birth and 18 months of age was investigated in 118 babies born to HIV-1-seropositive South African mothers. By 18 months 41 (34.7%) children were diagnosed as HIV-1-infected by standard criteria. All 77 uninfected babies cleared maternal antibodies by 15 months; 94.5% of these babies seroreverted by 12 months. By 9 months of age a significant difference (P < 0.05) was noted between antibody decay rates in infected and uninfected children. Of the children subsequently shown to be uninfected, 95.8% demonstrated > or = 50% decay in antibody titers between 6 and 9 months; only 1 in the infected group showed a similar pattern (sensitivity, 97.8%; specificity, 93.8%). The approach of assessing the progression of antibody decay in infected and uninfected babies makes it a feasible and useful tool for estimating vertical transmission rates and diagnosis of perinatal HIV-1 infection earlier than standard practice.

AIDS Serodiagnosis↗

Early life influences on later health: the role of nutrition.

Individuals who were small at birth have an increased risk of cardiovascular disease in later life. Barker has put forward a hypothesis to explain this and other associations, known as the 'fetal origins theory of adult disease'. It is proposed that chronic disease is the long-term outcome of physiological adaptations the unborn baby makes when it is undernourished, a process referred to as 'programming'. Maternal nutrition is thought to be a major influence on programming, and growth in childhood as well as obesity in later life may modulate the propensity for disease acquired in the womb. While robust evidence to support specific nutritional interventions during pregnancy is currently lacking, the theory in general affirms broader public health nutritional strategies and policies to improve the social and economic status of women.

Adaptation, Physiological↗

A TEAM approach to NICU care.

The NICU can be a very stressful place not only for the infants who need intensive care, but also for their parents. By implementing family-centered care using the TEAM model described here, nurses can make baby's stay less upsetting, promote bonding between parents and child, and help improve postpartum care.

Adult↗

[Facial paralysis in children].

Facial paralyses in children may be grouped under headings displaying a certain amount of individuality. Chronologically, first to be described are neonatal facial paralyses. These are common and are nearly always cured within a few days. Some of these cases are due to the mastoid being crushed at birth with or without the use of forceps. The intra-osseous pathway of the facial nerve is then affected throughout its length. However, a cure is often spontaneous. When this desirable development does not take place within three months, the nerve should be freed by decompressive surgery. The special anatomy of the facial nerve in the new-born baby makes this a delicate operation. Later, in all stages of acute otitis, acute mastoiditis or chronic otitis, facial paralysis can be seen. Treatment depends on the stage reached by the otitis: paracentesis, mastoidectomy, various scraping procedures, and, of course, antibiotherapy. The other causes of facial paralysis in children are very much less common: a frigore or viral, traumatic, occur ring in the course of acute poliomyelitis, shingles or tumours of the middle ear. To these must be added exceptional causes such as vitamin D intoxication, idiopathic hypercalcaemia and certain haemopathies.

Adolescent↗

Reproductive technologies: the two sides of the glass jar.

From our knowledge of fertilization and implantation, new methods of reproduction have been developed. These new reproductive technologies make possible new parenting arrangements, resetting the biological clock for women, selecting the timing of birth, sex and number of children, pre-implantation diagnosis and gene replacement. The new ways of making babies present us with a myriad of ethical, legal, social and psychological concerns.

Animals↗

A new threat to pregnant women's autonomy.

Courts and legislatures are increasingly being called upon to restrict the autonomy of pregnant women by requiring them to behave in ways that others determine are best for the fetuses they carry. The state should not attempt to transform pregnant women into ideal baby-making machines. Pregnant women make decisions about their behavior in the context of the rest of their lives, with all the attendant complexities and pressures. Our interest in helping future children by improving prenatal care would best be furthered by helping pregnant women to make informed, less constrained choices, not by punishing women or depriving them of choices altogether.

Behavior Control↗

[Progress and focal points discussed at the Japanese Committee on Pediatric Endoscopy].

Recent advances of pediatric endoscopy were discussed. Progresses of technique and improvements of instrument have made it possible to scope safely resulting in the increase of pediatric endoscopies. Gastric endoscopy has become useful to find the peptic ulcer of the stomach in the newborn babies who showed hematemesis. ERCP has been done successfully in the newborn babies making it possible to differentiate congenital biliary atresia from infantile hepatitis. Colonofiberscopy has become reliable and useful procedure to search the source of rectal bleeding but still had some problems to be resolved. General anesthesia has been widely used at the performance of pediatric endoscopy. In some institutes, local anesthesia has been recommended in the patients over 8 years old. In 1983, 1161 pediatric endoscopies were performed in 24 institutes, which were twofold of those performed in 1978. Number of these cases is not enough for the training of pediatric endoscopist. Urgent theme is to establish the system for the education of "true" pediatric endoscopist.

Anesthesia↗

An experience with trial of scar in 66 Ethiopian women.

The purpose of this study was to determine the circumstances in which trial of scar is conducted in the obstetric unit of Tikur Anbessa Hospital, Addis Ababa, Ethiopia, and evaluate the safety of the undertaking in terms of maternal and perinatal morbidity and mortality. Between 11 September, 1991 to 10 September, 1992, 66 women with previous caesarean section were given a trial of scar. The main pre-requests to allow a trial of scar were: only one previous lower uterine segment section, a cephalic presentation with no disproportion in the current labour and, the presence of a functional operating theatre. Labour was being monitored by checking the uterine contractions by fundal palpation and counting the Foetal heart rate (FHR) using the Pinnard Stethoscope. Compatible blood was prior prepared in only 7 (10.6%) labours. Forty seven (71.2%) parturients delivered vaginally. In 19 (28.2%) an emergency repeat section was done for failure of progress in labour. In one (1.5%) patient, a uterine scar dehiscence was detected. The 5th minute APGAR score was 7/10 or more in 64 (94.1%) and 6/10 in 3 (4.5%) of 68 neonates. There was one prepartum intra-uterine foetal death and one neonatal death of a preterm baby making the perinatal mortality rate (PNMR) of 29.4 per thousand. There was no maternal death. In conclusion, this study demonstrates that a trial of scar was a safe procedure.

Apgar Score↗

[Ethical observations concerning the limitations of medical duty to treat in severely handicapped neonates].

The author places the new treatment options of neonatal intensive care units into the framework of modern medicine in general. Paradoxical situations emerge. In one section of the hospital, premature newborn babies are treated in the intensive-care unit, and in another section others are selected for abortion. A late interruption is often an early labour and delivery. The right to live for every person is formulated in the text. The problems concerning viability and perspectives for life of premature or handicapped newborn babies makes it impossible to formulate a list of situations in which the duty to treat can be disregarded. The only treatment limit is complete brain-death. The parents of the child are the ones most affected by its disabilities; therefore, they must be included in the process of decision-making. There is no right for a healthy child, but a right of the child for acceptance and appropriate care by parents and a stable society.

Child Advocacy↗

Predictor of transplanted kidney deterioration following pregnancy--daily urine protein loss or serum creatinine concentration?

Increasing number of female kidney recipients deciding to born a baby makes us to investigate the impact of pregnancy on graft survival. The aim of study was to find the parameter that would have the predictive value for graft function following delivery. Scr and P in 33 pregnant renal allograft recipients (mean age 27.1 +/- 6.1 yrs) treated with pred + aza + CsA were studied for 6 mo before, during and 6 mo following delivery. As measured only by Scr graft function was stable in all pts (1.4 +/- 0.05 mg/dl). Significant rise in Scr following pregnancy was found in 6 of 33 pts. This "unstable" group was compared with 27 patients with "stable" despite pregnancy graft function. Proteinuria, but not Scr differentiated groups prior to pregnancy. The estimation of P prior to conception seems to be more potent parameter to predict kidney graft deterioration following pregnancy than Scr alone. Increase in P during and following pregnancy in "unstable" pts may reflect the acceleration of subclinical (not yet manifested with rise of Scr) chronic graft rejection due to pregnancy-induced hiperfiltration.

Adolescent↗

What choices should we be able to make about designer babies? A Citizens' Jury of young people in South Wales.

BACKGROUND: Young people will increasingly have the option of using new technologies for reproductive decision making but their voices are rarely heard in debates about acceptable public policy in this area. Capturing the views of young people about potentially esoteric topics, such as genetics, is difficult and methodologically challenging. DESIGN: A Citizens' Jury is a deliberative process that presents a question to a group of ordinary people, allows them to examine evidence given by expert witnesses and personal testimonies and arrive at a verdict. This Citizens' Jury explored designer babies in relation to inherited conditions, saviour siblings and sex selection with young people. PARTICIPANTS: Fourteen young people aged 16-19 in Wales. RESULTS: Acceptance of designer baby technology was purpose-specific; it was perceived by participants to be acceptable for preventing inherited conditions and to create a child to save a sibling, but was not recommended for sex selection. Jurors stated that permission should not depend on parents' age, although some measure of suitability should be assessed. Preventing potential parents from going abroad was considered impractical. These young people felt the Human Fertilisation and Embryology Authority should have members under 20 and that the term 'designer baby' was not useful. CONCLUSIONS: Perspectives on the acceptability of this technology were nuanced, and based on implicit value judgements about the extent of individual benefit derived. Young people have valuable and interesting contributions to make to the debate about genetics and reproductive decision making and a variety of innovative methods must be used to secure their involvement in decision-making processes.

Adolescent↗