Fetus Birth Defects
ALICE LEE CENTRE FOR NURSING STUDIES
NATIONAL UNIVERSITY OF SINGAPORE
Topic 2: The impact of foetus birth defect on pregnant women’s psychological health and recommendations for clinical practice
NUR1115 Maternal and Child Health Nursing
Matriculation Number: A0108433M
Bachelor of Science (Nursing)
Semester 2, AY2013-2014
17 March 2014
1. INTRODUCTION
Birth defects, also known as congenital diseases, are structural or functional abnormalities present at birth or in the uterus that cause physical or mental disability. (Lobo, 2008)
According to the CDC website (http://www.cdc.gov/ncbddd/aboutus/index.html), in the US: Birth defects affect 1 in 33 babies and are a leading …show more content…
cause of infant death in the United States. More than 5,500 infants die each year because of birth defects.
Although some are inherited, some due to certain toxins and some are multifactorial, appearing due to a complicated relationship between genetics and environmental effects (Lobo & Zhaurova, 2008). We aim to discover the psychological effects of discovering such defects on pregnant women and how we can better plan our interventions to reduce the negative effects surrounding this issue.
2. THE IMPACT OF FOETUS BIRTH DEFECT ON PREGNANT WOMEN’S PSYCHOLOGICAL HEALTH AND RECOMMENDATIONS FOR CLINICAL PRACTICE
2.1 Foetus Birth Defect.
With procedures such as amniocentesis and chorionic villus testing, increasing numbers of couples are getting their foetus checked for genetic defects. This allows parents to better plan if they want to continue with the pregnancy or terminate it. And as touched on by Dr. Saunders (2013), “The belief that parents and families will be damaged by having a disabled child, and that this damage can be limited through abortion, is almost unquestioned today.”
2.2 Psychological effect on pregnant women’s psychological health.
2.2.1. Finding out about the child’s defect.
The first most impactful point on a mothers’ psychology is when they find out about their foetus’ defects; mothers usually end up on a rollercoaster of emotions. (KidsHealth, 2013). Mothers often feel that someone is at fault; often blaming themselves and feeling that they either caused the defect or failed to take preventive measures (Cleveland Clinic, 2012). Most mothers who were originally looking forward to the birth of their child now find themselves stricken with anxiety and apprehension. They avoid other childbearing friends in fear of sharing about the defect and feeling different. Many become withdrawn and depressed. It becomes a trying time for the mother to decide if she wants to keep the child or not (Healthtalkonline, 2014).
2.2.2. Deciding to abort the child.
The second point would be when mother decides to abort the child. Abortion is a uniquely traumatic experience because it comprises a human death experience, specifically, the deliberate destruction of one’s unborn child and the beholding of a violent death, as well as a defilement of parental instinct and responsibility and the cutting of maternal attachments to the unborn child (MacNair, 2005). As Adler et al. (1990) said, “pre-existing factors in a woman 's life, such as emotional attachment to the pregnancy, lack of social support, pre-existing psychiatric illness, and conservative views on abortion increase the likelihood of experiencing negative feelings after an abortion.” This is supported by Kersting et al. (2005), who said that the termination of pregnancy for fetal disability is an emotionally traumatic major life event, which leads to acute post-traumatic stress response and intense grief.
2.2.3. Deciding to keep the child.
Another key point is when mothers decide to bear their children and live with their defects.
Caring for a child with a birth defect negatively impacts the physical and mental health of parents and caregivers (Lemacks, Fowles, Mateus & Kayte, 2013). Before the fetus is born, mothers, often feel unprepared, stressed and fearful of the future. They are afraid that they may become overwhelmed or that they cannot manage (Stone et al., 2010).
However, Dr. Saunders did argue that raising a disabled child does not always bring about negative psychological effects on the couple.
“Like the grit in the oyster that causes a pearl to form, caring for a child with special needs often strengthens relational bonds and encourages spiritual growth.”
Goodall (2003) substantiated that the mutual love between the disabled child and his parents and the care shown by professionals, families can act as a promoter for knowledge and consistency.
3. RECOMMENDATIONS FOR CLINICAL PRACTICE AND FUTURE STUDIES
Nursing interventions play important roles in providing emotional and psychological support for the patient and her partner. The timely and adequet implementation of nursing interventions can help reduce the negative psychological effect on …show more content…
women.
As healthcare professionals, it is important that we do not pass personal judgment on the parents. It is of utmost importance that parents are given the most recent, relevant information concerning their baby’s birth defect. This can help to further prepare them for future challenges and what to expect in their child’s development. Any written materials provided should be written in terms that are not overloaded with medical jargon they may not understand. Often, parents are frustrated and further irritated by receiving information that is outdated and irrelevant. (Lemacks, Fowles, Mateus & Thomas, 2013)
During such stressful times, a nurse’s role is most therapeutic by just being available, an active listener and easing the family’s grief (Mckinney, James, Murray, Nelson, & Ashwill, 2013). This applies not only to the moment when mothers know children are afflicted with a defect but also when they opt for abortion. Nurses can educate the partners as well, letting them know that they play an important role in the psychological wellbeing of the mother. A study done by Davis (2003) showed that women in detached relationships have felt deserted. When men shared their feelings, women felt it helped them recover better from their abortion.
The introduction of support groups for families dealing with child defects can also provide an avenue to receiving some first-hand experience. When parents communicate with other parents of children with birth defects, they grow a common social identity, which can provide a feeling of hope as parents see one another positively coping and as they each another through the process of raising their child (Shilling et al., 2013).
Another key recommendation would be to answer the question of every parent: “Why?” Congenital defects are usually multifactorial and understanding how it comes about completely is difficult. As healthcare professionals, more effort can be placed into conducting more research into the factors that contribute. Even if such research has no influence to their child, parents are often untiring and robust advocates for funding to prevent future defects in others. Parents hope further research will develop effective means of preventing birth defects and new treatment options for their children. The National Birth Defect Network Prevention Study (NBDPS) has been looking to answer some of these questions. Conducting research is only the first part. Healthcare professionals should also keep themselves up to date on such research and to disseminate such information to their patients. Any possible preventive measures should be marketed to our patients vigorously and any myths regarding child defects should be debunked actively.
4. CONCLUSION
Birth defects are common and critical.
They impact the women, often in negative ways. Adequate knowledge must be obtained before a nurse can provide relevant and appropriate information to the parents regarding their child’s condition. This way, they can make an informed choice if they decide to keep the child or not and what to expect if they do. Whichever the choice of the couple, it is important that we care for the psychological health of both parents. This will reduce their feelings of stress and abandonment, lower risks of depression by enabling them to support each other through this ordeal. For the vast majority of birth defects they are multifactorial and nurses should advocate for more research to be performed in this field. When any relevant and substantiated information is found, it is the duty of nurses to keep themselves informed and to advice mothers appropriately. Parents need to have access to services, including support groups that can help them care for their child, provide them with hope and a better outlook on life in addition to benefitting the entire
family.
1200 words
REFERENCES
Alder, N. E., David, H. P., Major, B. N., Roth, S. H., Russo, N. F. & Russo, N. F. (1990). Psychological responses after abortion. Science. 248 (4951), 41-44. doi:10.1126/science.2181664.
Centers for Disease Control and Prevention. (2011). Centre on Birth Defects and Developmental Disabilities (NCBDDD). Retrieved from: http://www.cdc.gov/ncbddd/aboutus/index.html (Retrieved on: 12 March 2013)
Coppola, G., Costantini, A., Tedone, R., Pasquale, S., Elia, L., Barbaro, M.F. & d’Addetta, I. (2012). The impact of the baby’s congenital malformation on the mother’s psychological well-being: an empirical contribution to the clubfoot. J Pediatr Orthop. 35 (5), 521-526. doi:10.1097/BPO.0b013e318257640c.
Goodall, J. (2003). The Pearl Effect. Triple Helix: Winter 2003. Pg. 10-11. Retrieved from: http://admin.cmf.org.uk/pdf/helix/win03/22pearl.pdf (Retrieved on 13 March 2014)
Gunter, J. (2012). Prenatal Screening Tests. Retrieved from: http://www.healthline.com/health/pregnancy/prenatal-testing (Retrieved on: 12 March 2013)
Kersting, A., Dorsch, M., Kreulich, C., Reutemann, M., Ohrmann, P., Baez, E. & Arolt, V. (2005). Trauma and grief 2-7 years after termination of pregnancy because of fetal anomalities--a pilot study. J Psychosom Obstet Gynaecol. 26(1), 9-14. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/15962717 (Retrieved on 13 March 2014)
Lemacks, J., Fowles, K., Mateus, A. & Thomas, K. (2013). Insights from Parents about Caring for a Child with Birth Defects. International Journal of Environmental Research and Public Health. 10 (8), 3465-3482. doi: 10.3390/ijerph10083465
Lobo, I. & Zhaurova, M.S. (2008). Birth Defects: Causes and Statistics. Retrieved from: http://www.nature.com/scitable/topicpage/birth-defects-causes-and-statistics-863 (Retrieved on: 12 March 2013)
MacNair, R. M. (2005). Perpetration-induced traumatic stress: The psychological consquences of killing. New York: Authors Choice Press.
McKinney, E. S., James, S. R., Murray, S. S., Nelson, K. A. & Ashwill, J. W. (2012). Maternal-Child Nursing. Forth Edition. Canada: Elsevier Saunders.
Saunders, P. (2013). Psychological trauma after abortion for fetal disability – parents need to know the facts. Retrieved from: http://www.nationalrighttolifenews.org/news/2013/10/psychological-trauma-after-abortion-for-fetal-disability-parents-need-to-know-the-facts/#.UyV9A3kxGlJ (Retrieved on: 12 March 2013)
Shilling V., Morris C., Thompson-Coon J., Ukoumunne O., Rogers M., Logan S. (2013). Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Dev. Med. Child Neurol. 55 (7). 602–609. doi: 10.1111/dmcn.12091
Stone, M. B., Botto L. D., Feldkamp, M. L., Smith, K. R., Roling, L., Yamashiro, D. & Alder, S. C. (2010). Improving quality of life of children with oral clefts. Journal of Craniofacial Surgeory. 21, 1359-1361.
Wheeler, P. G. (2012). When Your Baby Has a Birth Defect. Retrived from: http://kidshealth.org/parent/system/ill/baby_has_birth_defect.html# (Retrieved on: 12 March 2013)
NATIONAL UNIVERSITY OF SINGAPORE
Topic 2: The impact of foetus birth defect on pregnant women’s psychological health and recommendations for clinical practice
NUR1115 Maternal and Child Health Nursing
Matriculation Number: A0108433M
Bachelor of Science (Nursing)
Semester 2, AY2013-2014
17 March 2014
1. INTRODUCTION
Birth defects, also known as congenital diseases, are structural or functional abnormalities present at birth or in the uterus that cause physical or mental disability. (Lobo, 2008)
According to the CDC website (http://www.cdc.gov/ncbddd/aboutus/index.html), in the US: Birth defects affect 1 in 33 babies and are a leading …show more content…
cause of infant death in the United States. More than 5,500 infants die each year because of birth defects.
Although some are inherited, some due to certain toxins and some are multifactorial, appearing due to a complicated relationship between genetics and environmental effects (Lobo & Zhaurova, 2008). We aim to discover the psychological effects of discovering such defects on pregnant women and how we can better plan our interventions to reduce the negative effects surrounding this issue.
2. THE IMPACT OF FOETUS BIRTH DEFECT ON PREGNANT WOMEN’S PSYCHOLOGICAL HEALTH AND RECOMMENDATIONS FOR CLINICAL PRACTICE
2.1 Foetus Birth Defect.
With procedures such as amniocentesis and chorionic villus testing, increasing numbers of couples are getting their foetus checked for genetic defects. This allows parents to better plan if they want to continue with the pregnancy or terminate it. And as touched on by Dr. Saunders (2013), “The belief that parents and families will be damaged by having a disabled child, and that this damage can be limited through abortion, is almost unquestioned today.”
2.2 Psychological effect on pregnant women’s psychological health.
2.2.1. Finding out about the child’s defect.
The first most impactful point on a mothers’ psychology is when they find out about their foetus’ defects; mothers usually end up on a rollercoaster of emotions. (KidsHealth, 2013). Mothers often feel that someone is at fault; often blaming themselves and feeling that they either caused the defect or failed to take preventive measures (Cleveland Clinic, 2012). Most mothers who were originally looking forward to the birth of their child now find themselves stricken with anxiety and apprehension. They avoid other childbearing friends in fear of sharing about the defect and feeling different. Many become withdrawn and depressed. It becomes a trying time for the mother to decide if she wants to keep the child or not (Healthtalkonline, 2014).
2.2.2. Deciding to abort the child.
The second point would be when mother decides to abort the child. Abortion is a uniquely traumatic experience because it comprises a human death experience, specifically, the deliberate destruction of one’s unborn child and the beholding of a violent death, as well as a defilement of parental instinct and responsibility and the cutting of maternal attachments to the unborn child (MacNair, 2005). As Adler et al. (1990) said, “pre-existing factors in a woman 's life, such as emotional attachment to the pregnancy, lack of social support, pre-existing psychiatric illness, and conservative views on abortion increase the likelihood of experiencing negative feelings after an abortion.” This is supported by Kersting et al. (2005), who said that the termination of pregnancy for fetal disability is an emotionally traumatic major life event, which leads to acute post-traumatic stress response and intense grief.
2.2.3. Deciding to keep the child.
Another key point is when mothers decide to bear their children and live with their defects.
Caring for a child with a birth defect negatively impacts the physical and mental health of parents and caregivers (Lemacks, Fowles, Mateus & Kayte, 2013). Before the fetus is born, mothers, often feel unprepared, stressed and fearful of the future. They are afraid that they may become overwhelmed or that they cannot manage (Stone et al., 2010).
However, Dr. Saunders did argue that raising a disabled child does not always bring about negative psychological effects on the couple.
“Like the grit in the oyster that causes a pearl to form, caring for a child with special needs often strengthens relational bonds and encourages spiritual growth.”
Goodall (2003) substantiated that the mutual love between the disabled child and his parents and the care shown by professionals, families can act as a promoter for knowledge and consistency.
3. RECOMMENDATIONS FOR CLINICAL PRACTICE AND FUTURE STUDIES
Nursing interventions play important roles in providing emotional and psychological support for the patient and her partner. The timely and adequet implementation of nursing interventions can help reduce the negative psychological effect on …show more content…
women.
As healthcare professionals, it is important that we do not pass personal judgment on the parents. It is of utmost importance that parents are given the most recent, relevant information concerning their baby’s birth defect. This can help to further prepare them for future challenges and what to expect in their child’s development. Any written materials provided should be written in terms that are not overloaded with medical jargon they may not understand. Often, parents are frustrated and further irritated by receiving information that is outdated and irrelevant. (Lemacks, Fowles, Mateus & Thomas, 2013)
During such stressful times, a nurse’s role is most therapeutic by just being available, an active listener and easing the family’s grief (Mckinney, James, Murray, Nelson, & Ashwill, 2013). This applies not only to the moment when mothers know children are afflicted with a defect but also when they opt for abortion. Nurses can educate the partners as well, letting them know that they play an important role in the psychological wellbeing of the mother. A study done by Davis (2003) showed that women in detached relationships have felt deserted. When men shared their feelings, women felt it helped them recover better from their abortion.
The introduction of support groups for families dealing with child defects can also provide an avenue to receiving some first-hand experience. When parents communicate with other parents of children with birth defects, they grow a common social identity, which can provide a feeling of hope as parents see one another positively coping and as they each another through the process of raising their child (Shilling et al., 2013).
Another key recommendation would be to answer the question of every parent: “Why?” Congenital defects are usually multifactorial and understanding how it comes about completely is difficult. As healthcare professionals, more effort can be placed into conducting more research into the factors that contribute. Even if such research has no influence to their child, parents are often untiring and robust advocates for funding to prevent future defects in others. Parents hope further research will develop effective means of preventing birth defects and new treatment options for their children. The National Birth Defect Network Prevention Study (NBDPS) has been looking to answer some of these questions. Conducting research is only the first part. Healthcare professionals should also keep themselves up to date on such research and to disseminate such information to their patients. Any possible preventive measures should be marketed to our patients vigorously and any myths regarding child defects should be debunked actively.
4. CONCLUSION
Birth defects are common and critical.
They impact the women, often in negative ways. Adequate knowledge must be obtained before a nurse can provide relevant and appropriate information to the parents regarding their child’s condition. This way, they can make an informed choice if they decide to keep the child or not and what to expect if they do. Whichever the choice of the couple, it is important that we care for the psychological health of both parents. This will reduce their feelings of stress and abandonment, lower risks of depression by enabling them to support each other through this ordeal. For the vast majority of birth defects they are multifactorial and nurses should advocate for more research to be performed in this field. When any relevant and substantiated information is found, it is the duty of nurses to keep themselves informed and to advice mothers appropriately. Parents need to have access to services, including support groups that can help them care for their child, provide them with hope and a better outlook on life in addition to benefitting the entire
family.
1200 words
REFERENCES
Alder, N. E., David, H. P., Major, B. N., Roth, S. H., Russo, N. F. & Russo, N. F. (1990). Psychological responses after abortion. Science. 248 (4951), 41-44. doi:10.1126/science.2181664.
Centers for Disease Control and Prevention. (2011). Centre on Birth Defects and Developmental Disabilities (NCBDDD). Retrieved from: http://www.cdc.gov/ncbddd/aboutus/index.html (Retrieved on: 12 March 2013)
Coppola, G., Costantini, A., Tedone, R., Pasquale, S., Elia, L., Barbaro, M.F. & d’Addetta, I. (2012). The impact of the baby’s congenital malformation on the mother’s psychological well-being: an empirical contribution to the clubfoot. J Pediatr Orthop. 35 (5), 521-526. doi:10.1097/BPO.0b013e318257640c.
Goodall, J. (2003). The Pearl Effect. Triple Helix: Winter 2003. Pg. 10-11. Retrieved from: http://admin.cmf.org.uk/pdf/helix/win03/22pearl.pdf (Retrieved on 13 March 2014)
Gunter, J. (2012). Prenatal Screening Tests. Retrieved from: http://www.healthline.com/health/pregnancy/prenatal-testing (Retrieved on: 12 March 2013)
Kersting, A., Dorsch, M., Kreulich, C., Reutemann, M., Ohrmann, P., Baez, E. & Arolt, V. (2005). Trauma and grief 2-7 years after termination of pregnancy because of fetal anomalities--a pilot study. J Psychosom Obstet Gynaecol. 26(1), 9-14. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/15962717 (Retrieved on 13 March 2014)
Lemacks, J., Fowles, K., Mateus, A. & Thomas, K. (2013). Insights from Parents about Caring for a Child with Birth Defects. International Journal of Environmental Research and Public Health. 10 (8), 3465-3482. doi: 10.3390/ijerph10083465
Lobo, I. & Zhaurova, M.S. (2008). Birth Defects: Causes and Statistics. Retrieved from: http://www.nature.com/scitable/topicpage/birth-defects-causes-and-statistics-863 (Retrieved on: 12 March 2013)
MacNair, R. M. (2005). Perpetration-induced traumatic stress: The psychological consquences of killing. New York: Authors Choice Press.
McKinney, E. S., James, S. R., Murray, S. S., Nelson, K. A. & Ashwill, J. W. (2012). Maternal-Child Nursing. Forth Edition. Canada: Elsevier Saunders.
Saunders, P. (2013). Psychological trauma after abortion for fetal disability – parents need to know the facts. Retrieved from: http://www.nationalrighttolifenews.org/news/2013/10/psychological-trauma-after-abortion-for-fetal-disability-parents-need-to-know-the-facts/#.UyV9A3kxGlJ (Retrieved on: 12 March 2013)
Shilling V., Morris C., Thompson-Coon J., Ukoumunne O., Rogers M., Logan S. (2013). Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Dev. Med. Child Neurol. 55 (7). 602–609. doi: 10.1111/dmcn.12091
Stone, M. B., Botto L. D., Feldkamp, M. L., Smith, K. R., Roling, L., Yamashiro, D. & Alder, S. C. (2010). Improving quality of life of children with oral clefts. Journal of Craniofacial Surgeory. 21, 1359-1361.
Wheeler, P. G. (2012). When Your Baby Has a Birth Defect. Retrived from: http://kidshealth.org/parent/system/ill/baby_has_birth_defect.html# (Retrieved on: 12 March 2013)