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- Herausgeber: via tolino media
- Kategorie: Wissenschaft und neue Technologien
- Sprache: Englisch
- Veröffentlichungsjahr: 2023
"Anencephaly: Navigating a Journey of Love and Loss" is an insightful and compassionate guide that explores the complexities of this devastating condition. This book offers a wealth of information and support for parents, families, and healthcare professionals who are navigating the difficult journey of anencephaly. With chapters covering a range of topics, from diagnosis and grief to prevention and advocacy, this book provides a comprehensive look at anencephaly and its impact on families and communities. With its engaging style and heartfelt approach, "Anencephaly" is a must-read for anyone seeking comfort and guidance on this difficult journey.
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Inhaltsverzeichnis
Introduction to Anencephaly
History of Anencephaly
Causes of Anencephaly
Risk Factors for Anencephaly
Genetic Factors and Anencephaly
Environmental Factors and Anencephaly
Diagnosis of Anencephaly
Prenatal Screening for Anencephaly
Imaging Techniques for Anencephaly
Management of Anencephaly
Medical Management of Anencephaly
Surgical Management of Anencephaly
Palliative Care for Anencephaly
Neonatal Care for Anencephaly
Ethical Issues in Anencephaly
Abortion and Anencephaly
End-of-Life Decisions for Anencephalic Infants
Psychological Impact of Anencephaly
Coping with Anencephaly Diagnosis
Support for Parents of Anencephalic Infants
Grief and Bereavement in Anencephaly
Siblings and Anencephaly
Extended Family and Anencephaly
Social Impact of Anencephaly
Anencephaly Awareness and Advocacy
Anencephaly Research and Advances in Treatment
Prevention of Anencephaly
Folic Acid Supplementation and Anencephaly
Periconceptional Care for Anencephaly Prevention
Public Health Strategies for Anencephaly Prevention
Anencephaly and Other Neural Tube Defects
Spina Bifida and Anencephaly
Encephalocele and Anencephaly
Holoprosencephaly and Anencephaly
Chiari Malformation and Anencephaly
Hydrocephalus and Anencephaly
Cerebral Palsy and Anencephaly
Microcephaly and Anencephaly
Trisomy 13 and Anencephaly
Anencephaly and Stillbirth
Anencephaly and Infant Mortality
Anencephaly and Developmental Delay
Anencephaly and Neurological Disorders
Anencephaly and Epilepsy
Anencephaly and the Future of Medicine
Impressum
Anencephaly
Navigating a Journey of Love and Loss
Soma Kumawat
© 2023 Soma Kumawat. All rights reserved.
Imprint: Independently Published
Email: [email protected]
Disclaimer:
The author assumes no liability for damage of any kind that arises directly or indirectly from the use of the information provided in this book.
Introduction to Anencephaly
Anencephaly is a rare and devastating congenital neural tube defect that affects the development of the brain and skull. Infants born with anencephaly have incomplete brain development and are missing most of their skull. This condition occurs in approximately 1 out of every 10,000 pregnancies, with higher rates occurring in certain populations.
The name anencephaly comes from the Greek words "an" meaning "without," and "encephalon" meaning "brain." In essence, anencephaly is a condition in which the neural tube fails to close at the end of the third week of pregnancy. This results in the absence of the major portion of the brain and skull, leaving only a small mass of brain tissue that is incapable of supporting life.
Infants born with anencephaly are usually stillborn or die within a few hours of birth. Those who survive longer usually have severe developmental disabilities and require extensive medical care.
Anencephaly is a devastating diagnosis for parents and families, as it is often discovered during prenatal testing. The decision to continue or terminate a pregnancy can be emotionally and ethically challenging. The physical and psychological toll of anencephaly affects not only the child but also their families and caregivers.
The cause of anencephaly is not fully understood, but it is believed to be a combination of genetic and environmental factors. Folic acid deficiency is one of the known environmental factors that can contribute to anencephaly. Pregnant women are advised to take folic acid supplements before conception and throughout pregnancy to reduce the risk of neural tube defects.
The diagnosis of anencephaly is usually made during prenatal testing, such as ultrasound or amniocentesis. Anencephaly is typically detected by the absence of the skull and brain tissue in the ultrasound images. In some cases, diagnosis may not occur until after birth.
The management of anencephaly is primarily supportive, as there is no cure for this condition. Prenatal counseling and support are essential for parents facing the diagnosis of anencephaly. Palliative care can be provided to manage the pain and symptoms of the infant, and hospice care can be arranged for end-of-life care.
The impact of anencephaly extends beyond the medical and physical implications for the infant. The psychological effects of anencephaly can be significant for parents and families, and support services are available to help cope with the grief and loss.
In recent years, there has been increased attention to anencephaly and other neural tube defects, with efforts focused on prevention, research, and advocacy. Public health campaigns promoting folic acid supplementation and other preventive measures have helped to reduce the incidence of anencephaly and other neural tube defects. Research into the underlying causes of anencephaly and the development of new treatments and therapies is ongoing. Advocacy organizations work to raise awareness of anencephaly and support affected families.
In conclusion, anencephaly is a rare and devastating neural tube defect that affects the development of the brain and skull. It is a condition that impacts not only the infant but also their families and caregivers. The diagnosis of anencephaly can be emotionally and ethically challenging for parents and families, and support services are available to help cope with the grief and loss. Efforts to prevent anencephaly through public health campaigns and research into its causes and treatment offer hope for the future.
History of Anencephaly
Anencephaly is a congenital birth defect that has been recognized for centuries, but its cause and treatment have been elusive until recent times. The earliest known recorded case of anencephaly dates back to the 17th century, where an infant with this condition was described in medical literature.
Throughout history, anencephaly has been known by various names such as "aprosopus," "anencephalia," and "cephalosyndactyly." In the early 19th century, an English physician named John Clarke provided one of the first detailed descriptions of anencephaly, which he called "cephalosyndactyly." He described the absence of the brain and part of the skull, along with other abnormalities such as webbed fingers and toes.
During the 20th century, significant advancements were made in understanding the causes and risk factors of anencephaly. In the 1920s, research suggested that anencephaly may be caused by a deficiency in folic acid. This theory was later confirmed by a study in the 1960s, which showed that pregnant women who took folic acid supplements had a lower risk of giving birth to a child with neural tube defects, including anencephaly.
During the mid-20th century, anencephaly was identified as a significant public health issue, and efforts were made to prevent its occurrence. In the United States, mandatory fortification of grain products with folic acid was introduced in 1998, which led to a significant reduction in the incidence of neural tube defects, including anencephaly.
As research into the causes and risk factors of anencephaly continued, genetic testing became available to identify specific genes that contribute to the development of neural tube defects. Studies showed that mutations in genes such as the MTHFR gene can increase the risk of neural tube defects in certain populations.
In recent years, advances in medical technology and genetics have enabled doctors to diagnose anencephaly prenatally, allowing parents to make informed decisions about their pregnancy. Prenatal testing, such as ultrasound and amniocentesis, can detect anencephaly as early as 12 weeks into pregnancy.
The management of anencephaly has also evolved over time. In the past, infants with anencephaly were not given medical intervention, as there was no known cure for this condition. However, with advances in palliative care and hospice care, medical professionals are now able to provide supportive care to manage the pain and symptoms of the infant and offer end-of-life care to families.
In recent years, there has been increased attention to anencephaly and other neural tube defects, with efforts focused on prevention, research, and advocacy. Public health campaigns promoting folic acid supplementation and other preventive measures have helped to reduce the incidence of anencephaly and other neural tube defects. Research into the underlying causes of anencephaly and the development of new treatments and therapies is ongoing. Advocacy organizations work to raise awareness of anencephaly and support affected families.
In conclusion, anencephaly has been recognized for centuries, and its causes and treatment have evolved over time. Early descriptions of anencephaly provided insight into this condition, but it was not until the 20th century that significant progress was made in understanding its causes and risk factors. Advances in medical technology and genetics have allowed for earlier diagnosis and improved management of anencephaly. Efforts to prevent anencephaly through public health campaigns and research into its causes and treatment offer hope for the future.
Causes of Anencephaly
Anencephaly is a birth defect that occurs when the neural tube, which forms the brain and spinal cord, fails to close properly during early fetal development. This results in the absence of a major portion of the brain and skull. The causes of anencephaly are not fully understood, but research has identified several risk factors that can increase the likelihood of this condition.
Genetic Factors
Studies have shown that genetic factors can play a role in the development of anencephaly. Mutations in certain genes, such as the MTHFR gene, can increase the risk of neural tube defects, including anencephaly. In addition, certain genetic disorders, such as Meckel-Gruber syndrome, can increase the risk of anencephaly.
Environmental Factors
Environmental factors can also contribute to the development of anencephaly. One of the most well-established risk factors is a deficiency of folic acid, a B vitamin that is necessary for the proper development of the neural tube. Studies have shown that women who consume less folic acid before and during pregnancy are at increased risk of having a child with anencephaly. Other environmental factors that have been linked to an increased risk of anencephaly include exposure to certain medications, such as valproic acid, and exposure to certain chemicals and toxins.
Medical Conditions
Certain medical conditions can also increase the risk of anencephaly. For example, women with diabetes are at increased risk of having a child with neural tube defects, including anencephaly. Similarly, women with obesity or a body mass index (BMI) over 30 are at increased risk of having a child with anencephaly.
Other Risk Factors
There are several other risk factors that have been linked to an increased risk of anencephaly. These include:
Previous pregnancies with neural tube defects
Advanced maternal age
Family history of neural tube defects
Use of certain medications, such as anticonvulsants
Maternal fever during early pregnancy
Prevention of Anencephaly
Because the causes of anencephaly are not fully understood, there is no foolproof way to prevent this condition. However, there are several steps that women can take to reduce their risk of having a child with anencephaly:
Take folic acid supplements: Women who are planning to become pregnant should take a daily folic acid supplement of 400-800 micrograms. Women who have had a previous child with a neural tube defect or who are taking certain medications may need a higher dose of folic acid.
Eat a healthy diet: In addition to taking a folic acid supplement, women should eat a diet that is rich in folate, the natural form of folic acid.
