In general terms, the disability rights critique raises the worry that prenatal testing and selective abortion risk further stigmatizing disabled people, reducing them to a single defining trait, and harming disability communities. It points out that the offer of a prenatal test for a particular trait is never neutral, but rather implies that a reasonable person might wish to know whether her fetus has this trait, and that this information might reasonably be the basis for a decision not to continue the pregnancy.
Although many contributors to the disability rights critique of prenatal testing consider themselves firmly in favor of general abortion rights, they share at least a prima facie worry about the ethics of aborting fetuses on the basis of tests for future disability. Entrenchment of the Medical Model of Disability Disability theorists have most visibly distinguished between the medical and the social model of disability, but sometimes use related labels such as the metaphysical, the biological, and the political model of disability for discussion see, e.
According to the medical model, a disability is a pathology or impairment of an individual body, in virtue of which the disabled person is less able to perform various functions than the able-bodied person. Accordingly, since it is the job of medicine to fix bodies or at least minimize the undesirable effects of their medical conditions, it is appropriate for doctors to fix or mitigate disability when they can Saxton According to the social model, on the other hand, disability is inherently a relational property: it concerns a more problematic than normal fit between a body and its social and material environment.
Disabilities are historically specific and context-dependent Tremain Someone who used a wheelchair in an environment in which all spaces accessible to any normal person are wheelchair accessible, the argument goes, would be no more disabled than is a resident of a sprawling American suburb who cannot obtain food or make a living without driving her car. Myopia was a serious, even a life-threatening disability in the hunter-gatherer era, but in the age of easily accessible effective eyeglasses most of us never even think to conceptualize our myopia as a disability.
If disability is a relational misfit between body and environment, then mitigating or eliminating disability can be accomplished by changing the body, the environment, or both. On this view, making spaces accessible to people with different means of mobility, ensuring that everyone has access to text-based communication options, and working to remove social stigmas concerning abnormal anatomy, for example, literally lessen or remove disabilities such as mobility impairment, deafness, and cleft palate rather than merely accommodating them.
This is not to say that all disabilities are such that we could design an environment that would substantially mitigate them. In the proper environment, what might otherwise be a disability can just be a difference, a human variation that can enhance the diversity of our culture Wendell Once we accept this, then we are faced with a choice when it comes to managing a particular disability: we can try to change bodies, social and material environments, or a combination of these, and it is an open question in each case which is the most effective and ethical approach.
The routinization of prenatal testing arguably institutionalizes the idea that disability is a medical condition detected at the level of the individual body. According to the disability rights critique, this limits our ability to imagine addressing and alleviating disability at the social level. Yet in at least some cases, social approaches to disability have proven enormously effective. Consider Down syndrome, which is the main condition for which prenatal testing has become routine: Due to increased integration into families and schools, better support and education, changing expectations, and other social changes, people with Down syndrome now often have life spans and a level of independence and educational achievement that were inconceivable fifty years ago.
Moreover, as Sophia Isako Wong illustrates, the social model's encouragement of integration, understanding, and acceptance may have significant positive impacts on non-disabled individuals, and on communities more generally Weakening the Disability Community To the extent that prenatal testing and abortion for a particular condition become routinized, there will be fewer people born with that condition. Insofar as prenatal testing and abortion are generally cheaper and easier than social interventions, over the long term they may come to be seen as the only responsible and socially supported option.
This threatens the quality of life and availability of resources for those who remain. They may be faced with increased stigmatization, less possibility for community, and less tolerance and understanding. Some commentators, however, deny that things have gotten worse for people with disabilities since selective abortion of fetuses with impairments has gained popularity e.
And if efforts to accommodate persons with impairments are increasing, charges against prenatal testing for further weakening and marginalizing the disability community may be complicated if not diminished. Nevertheless, the fruits of those efforts at accommodation are not enjoyed equally by all. For instance, the rarer a condition is, the less social and political motivation will exist to provide resources, support, tailored educational activities, and the like for those who have it.
Our Current Counseling Practices Distort Decision-Making Currently, a large majority of pregnant women who are offered standard prenatal screens and tests accept them, and the majority of those who receive abnormal test results proceed to abort. However, current counseling surrounding the tests does not include any exposure to people who have the tested-for conditions or any discussion of the social resources available for families with children with the conditions. Even supposedly nondirective counseling often uses stigmatizing language to talk about disability and the choice not to abort a fetus with a disabling trait, and reflects unsupported negative judgments regarding the abilities of and quality of life for persons with disabilities Asch , Madeo et al.
Different forms of counseling might enable more informed decision-making and yield fewer choices to test and fewer choices to abort after testing.
For instance, Bonnie Steinbock argues that prenatal testing practices for some conditions could be geared towards helping parents prepare for the birth of a child with that condition, rather than framed as preludes to a decision about abortion. In order for genuinely informative and trusting interactions to take place between counselors and prospective parents, however, counselors must be equipped with "disability competencies," which involve experience with disabilities and understanding of how various disabilities affect lives and families; improving counseling practices will require mandatory training in these areas Sanborn and Patterson The Expressivist Argument This argument holds that prenatal testing, particularly as linked with selective abortion, has expressive meaning for everyone with that condition.
If we abort a fetus on the basis of a single trait, this symbolically suggests that not only this fetus's life but the life of anyone who has this trait is not worth living or preserving. Prenatal genetic testing, as disability rights critics suggest, thus perpetuates and reinforces denigrating social attitudes toward persons with disabilities e. Saxton One might argue that any use of prenatal testing for a condition followed by abortion expressively devalues that condition.
Not all disability theorists agree that prenatal testing does indeed send a discriminatory message, or that it expresses anything specific at all e. Malek James Nelson tells the story of choosing to get a vasectomy after his third child. He argues it seems implausible to understand his act as having an expressive significance that devalues all fourth-children.
Whenever we decide not to have a child, he argues, we always do so based on some specific features it would have, such as adding to a large family with strained resources. Likewise, he claims, choosing not to carry a pregnancy to term after a prenatal test revealing a particular condition may reflect a judgment about particular circumstances rather than expressing a general attitude towards people with that condition. Adrienne Asch responds that one cannot relevantly compare the property of being a fourth child to the property of having a specific disabling trait, because the latter is an inherent rather than a relational property of the child.
Hence to abort on the basis of the disabling trait is to reject that kind of person in a different and stronger way. But Asch's response seems to push against one of the main points of the social model of disability, which she otherwise defends: the view that disabilities are also relational rather than inherent properties.
More generally, the force of the expressivist objection may rely on a view of disabling traits as identity constituting, thereby endorsing an essentialist understanding of disability Edwards For many, it seems possible to decide against bearing a child who has a property that in context will make that child more difficult to raise whether it is deafness, a chromosomal disorder, or fourth-childness , without devaluing all people with that property in any decontextualized way.
Notice that this response does not combat the idea that routinization is expressively devaluing of some lives, even if it convinces us that individual uses of the technology are not. Parental Attitudes and Responsibilities Some disability rights critics suggest that prenatal genetic testing encourages an inappropriately commodifying and perfectionist approach to potential children, and stultifies parental expression of unconditional love and commitment Asch and Wasserman By allowing particular traits to determine reproductive decision-making, potential parents adopt an attitude of conditional acceptance that is directly at odds with the nurturing and devotion children need to flourish.
Others, however, question the requirement of so-called unconditional love, given that this requirement has developed in a context where mothers are judged by the completeness of their caregiving roles, and where other social factors impeding good care and acceptance are ignored e. Gedge A familiar concern with the disability critique of prenatal testing is that it asks too much from prospective parents. Even if there are good reasons to worry about the impact of widespread testing, it is hard to deny that for many people, given the level of support and acceptance available for families with disabled children, raising a child with a disability can be a serious challenge.
Asking parents to take on this challenge so as to promote larger social goals may be unreasonable. Yet some critics of prenatal testing reject the assumption that bearing and raising a child with a disability is inevitably more burdensome than raising a non-disabled child.
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Marsha Saxton, for instance, counters the purportedly feminist endorsement of prenatal testing that casts testing as a protective or even emancipatory tool for women. She argues that it is not disability itself that burdens women who have disabled children, but rather the unjust circumstances of caregiving, where ongoing sacrifices are expected from mothers, and community resources and support remain woefully inadequate , Disability theorists have worried that it seems nearly impossible, in practice, to draw a line between acceptable and unacceptable tests.
Nearly all scholars agree that testing for Tay-Sachs or other diseases that lead to a short life filled with intense suffering and no hope of a cure is ethically acceptable, and nearly all agree that testing for vanity traits such as eye color would be unacceptable. This is another reason that many scholars and advocates wish to emphasize the stigmatization of particular traits and the layers of social and economic injustice that exacerbate this stigmatization e.
Roberts and Jesudason , Wasserman The recent advancement of so-called non-invasive prenatal testing NIPT has complicated existing ethical issues and introduced new ones in obstetrical care, and some believe that current normative frameworks for assessing prenatal testing are ill-equipped to navigate these issues Schmitz The past decade has seen enormous changes in testing technologies, and non-invasive prenatal testing is a striking example of how rapidly new testing methods translate to clinical and commercial enterprise Skirton and Patch Most NIPT targets aneuploidy; some tests for monegenic disorders are also sought after but development and clinical uptake of these is relatively slow Chitty and Bianchi Several ethical concerns piggy back on those associated with prenatal testing generally; for instance, earlier and less risky testing may facilitate selective abortions, encourage the commodification of children, or, conversely, amplify the coercive technological force of prenatal testing as a medical intervention required for responsible parenting de Jong and de Wert Each of these concerns picks up on the likelihood of greater routinization of prenatal testing given the tests' non-invasiveness, low medical risk to the pregnant woman and fetus, and high accuracy.
Some commentators worry that these features of NIPT, particularly its lower medical risk, may serve to justify loosening, limiting, or even discarding informed consent requirements e. Other problems with increased routinization may also include affirmation of anti-disability bias and devaluation of disabled lives, particularly regarding Down Syndrome Kaposy NIPT carries most of the same ethical issues as traditional testing and screening methods, and may exacerbate some.
In contrast, proponents of the medical model of birth argue that while serious complications during labor are reasonably rare, they can occur quickly and their effects can be catastrophic, and it is simply good risk reasoning to have the expertise and resources of high-tech medicine available during labor.
There is no clear scientific method for assessing the overall benefits or detriments of normalizing highly technologically mediated, medicalized birth. Most of the standard interventions during labor have never been tested in any systematic fashion, but are rather part of a folk culture of medicine. Lyerly argues that the problem with modern birthing practices is not the use of technology or the lack of it per se , for technology itself has no inherent meaning or import.
Rather, the problem lies in a culture of birth that is expert-centered rather than patient-centered. When misused, technology can subjugate women to medical authority, undercut their sense of dignity and control, and alienate them from the birth process. But it can also be used to enhance women's agency such as when pain medication enables a woman to maintain her dignity and presence of mind at her birth, or when a scheduled cesarean allows a woman to feel confident that she will have her partner who is about to deploy overseas present at her birth.
Ethical debate surrounds when and how women ought to be able to choose to have a cesarean delivery for non-medical reasons. Because there is no validated and universal medical code to indicate such deliveries, we do not know whether elective cesareans typically referred to as Cesarean Deliveries on Maternal Request, or CDMRs significantly impact the overall cesarean rate or are a rare novelty.
Nevertheless, in light of several notorious cases of celebrity CDMRs, the issue has sparked intense controversy. Some worry about the prevalence of cesarean sections indicating the rise of a technological imperative in standard obstetrical practice Burrow Empirical evidence, however, does not decisively support either birthing method. A NIH State of the Science conference assessed the available scientific evidence concerning the short and long term risks to women and infants of vaginal and surgical delivery, and concluded that there was insufficient evidence to issue a recommendation concerning the relative safety of planned vaginal and cesarean births.
The most comprehensive meta-analyses reveal different risks in each case that are hard to commensurate and a dearth of high-quality data. Thus from a narrowly medical evidence-based point of view there is no justification for recommending one approach to delivery over the other Minkoff , Young Mi and D'Alton There is a clear sense in which expanding women's voluntary access to cesarean deliveries increases women's autonomy: it gives women more options. Some of the ethical literature on this issue Minkoff and Chervenak , Schwartz takes it as obvious that incorporating CDMR into obstetrical practice would enhance patient autonomy, and then asks whether this advantage is offset by the harm of unnecessary surgery.
But others have argued that autonomy consists of more than choice, and that in social context, making CDMR routinely available might actually impede women's autonomy Bergeron , Kukla et al. In a context where doctors have high cognitive and social authority, and technological intervention and management are associated with safety, the offer of CDMR will not be a neutral offer but one that has performative force and a normative valence: it will not merely report on an option, but may well alter the woman's preferences and her understanding of what counts as a socially sanctioned choice.
Furthermore, the act of offering CDMR may itself contribute to the normalization of technologically intensive birth and medicalization. If, over time, cesarean section is routinely offered as an option, then it may become the norm, as women will feel that the more predictable and expertly managed option is the more responsible choice.
And, as cesarean deliveries become increasingly normalized, obstetricians' skills at vaginal delivery might attenuate, in turn creating more need for cesarean deliveries and eventually perhaps making vaginal delivery a choice out of reach for most women Little et al. Medical care for pregnant women generally impacts fetuses, whether by design or as a side effect. Likewise, direct attempts to provide medical assistance to fetuses inevitably impact the women in whose bodies they reside.
A recurring issue in obstetrical ethics concerns whether and when the fetus should be conceptualized as a patient in its own right.
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Doing so has substantive and complex implications for doctors, who have distinctive duties to their patients, as well as other possible legal and ethical consequences. In several papers the first published in , Chervenak and McCullough have argued that late-term, viable fetuses ought to be conceived of as patients who are owed beneficence and respect for their future autonomy. A pre-viable fetus, in their view, should become a patient if and only if the pregnant woman autonomously chooses to grant it such status.
Once the fetus is a patient, they argue, the doctor has a duty to try to protect its well-being and balance its needs against the needs of the pregnant woman. They point out that they are not committed to viewing fetuses as persons. The question of whether the fetus is a patient is distinct from though in various ways intertwined with the well-worn question of whether it is a person.
It is by no means obvious that only people can be patients, nor that all people become patients just by being impacted by a medical procedure. Nevertheless, many feminist bioethicists i. Furthermore, understanding the fetus as a patient in its own right encourages conceiving of the mother and fetus as beings with entirely separate interests, which may then be in conflict as easily as aligned.
While at times the interests of the woman and the fetus may diverge, typically these interests are inextricably related, both because expectant mothers usually care intensely about fetal well-being, and because protecting the health of the pregnant woman is typically the best way to protect the health of the fetus Mattingly , Lyerly, Little and Faden a.
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Maternal-fetal surgery to correct serious fetal anomalies such as severe Spina Bifida is an experimental field of medicine. Lyerly and Mahowald argue that even the switch to conceiving the surgeries as involving two patients whose well-being must be weighed separately is insufficient; rather, they think, we should understand maternal and fetal well-being and interests as tightly intertwined, and the woman as the sole patient.
In both theory and practice, maternal-fetal surgery raises a number of ethical issues we discuss in this article, including questions concerning pregnant women's autonomy, consent under social pressure and in the shadow of powerful social values, and attitudes towards disability Antiel In this section, we take up ethical issues that arise in the medical management of pregnant women who are decisionally impaired, as well as the question of whether it is ever ethically justifiable to override a pregnant woman's autonomous refusal of medical intervention for the sake of the well-being of her fetus.
When a patient is decisionally impaired or incapacitated, ethical dilemmas concerning medical decision-making arise: Should the patient be included in decision-making in a limited way, to the best of her abilities, or should paternalistic decision-making take over? Should a proxy decision-maker make choices on the basis of the patient's best interest, or by simulating as best she can the autonomous decision that the patient would have made, had she been in a position to make one?
Such issues are familiar in the context of end of life care and care for children and the cognitively impaired. When a pregnant woman is decisionally impaired or incompetent, however, there are extra layers of ethical complexity to contend with, because her treatment typically affects not only her, but also her child to-be. The developing fetus clearly has welfare or at least future welfare but no capacity for autonomous choice, and we have no formula for combining its interests and moral claims with those of the mother. For extra complication, the well-being of the child to-be is typically not independent of the well-being of its mother.
Further ethical issues may arise in cases where, prior to serious decision impairment due, for example, to massive brain injury or brain death , the pregnant woman has autonomously expressed her preference to continue to gestate and give birth. In such cases, ethicists at both the clinical and policy-making level may face questions about how to respect the pregnant woman's autonomy while balancing concerns for the potential child. They may be required to consider how external factors such as available caregivers for the potential child may factor into the possibility and desirability of going forward with the pregnancy.
Thus doctors must balance autonomy-based and beneficence-based obligations to the pregnant woman, along with beneficence-based obligations to the fetus e. Coverdale et al. When a pregnant woman is decisionally competent, health care practitioners and ethicists strongly privilege her right to make final treatment decisions in complicated cases where her interests may conflict with those of her future child although see section 3. Moreover, the fetus generally has no legal standing that would allow its interest to override the pregnant woman's interest Sperling But when the pregnant woman has diminished or no autonomy, the situation is murkier.
Cases have arisen in which a pregnant woman has zero decisional capacity and no hope of future agency, for instance when she is in a long-term persistent vegetative state or has suffered frontal brain death and is being kept alive artificially for recent case studies see, e. The central questions raised in such cases include whether it is ethical to keep a pregnant woman alive for the sole purpose of continuing the pregnancy, who should make this determination, and which considerations should factor into that decision. One recent case demonstrates the continuing power of fetal protections in contexts where anti-abortion laws are still in place.
In , a woman from Texas became braindead at 14 weeks pregnant, and was kept on life-support against her and her family's wishes, until it was established that her fetus was also brain dead Ecker In many situations, however, the woman's preference will remain unclear. The woman miscarried while the debate was still in progress.
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Other recent medical attempts to continue fetal gestation in the wake of maternal brain death have enjoyed some success Esmaeilzadeh et al. In some of these cases, questions about how to include the woman's voice or respect her agency are off the table, and her welfare interests, if any, are minimal. She has no conscious experience or future narrative to protect. We may, however, believe that she still has interests in dignity and in having her former narrative and values respected. Protecting these interests may preclude certain forms of treatment of the dead, including artificially continuing pregnancy Sperling Protecting these interests may also, conversely, raise issues regarding performing abortions on pregnant women who have become brain dead Watt Some feel that it is unacceptable to use a pregnant woman's body as a mere means by continuing her life solely for its incubation function; others will argue that if the father-to-be wants to raise his child, it is callous to deny the child-to-be its chance at life and the father his chance at parenthood in virtue of abstract concerns about instrumentalism and respect, given that the woman will experience no extra suffering, and no thwarting of her autonomous preferences assuming she left no advance directive.
Instead, he urges that the next of kin ought to have the right to decide when to remove life support, as they would in normal cases of non-pregnant patients. Hilde Lindemann writing as Hilde Lindemann Nelson, and Laura Purdy argue that keeping a brain dead woman alive for the singular purpose of continuing her pregnancy is problematic. Lindemann argues that the woman no longer exists as a person of the sort that can have agent-relative duties towards her fetus.
Furthermore, keeping her alive as an incubator grossly misrepresents the significance of pregnancy, reducing it to a passive biological process rather than a creative, cooperative process involving the woman's agency. On the other hand, in these cases pregnancy is clearly not a creative or active project for the woman, and, while it may be symbolically problematic not to acknowledge women's creative, agential role in typical pregnancies, it seems odd to argue that we should prevent pregnancies that do not fit this typical profile from existing in order to symbolically protect the myth that they always do so.
Purdy also points out that sustaining such pregnancies is ethically problematic because it involves extreme interventions on women's bodies without their consent. Both Lindemann and Purdy question whether such extraordinary and expensive medical interventions, aimed at saving a fetus who is not yet a baby, are a just or reasonable use of medical resources especially if the fetus stands a low chance of survival and normal development.
Lindemann worries, furthermore, that such extraordinary measures help enforce an image of the fetus as already a person with a claim on resources as large as or even larger than that of existing persons. Pregnant women with limited capacity for autonomous agency and decision-making due to cognitive disability, mental illness, drug use, etc. Such women are often particularly socially vulnerable and frequent targets of manipulation; they face multiple barriers to having their reproductive and sexual health needs recognized and met e. Protecting their agency and well-being as well as the well-being of their future children can thus be a delicate negotiation.
Furthermore, physicians and family members may not be neutral parties when it comes to assessing a pregnant woman's level of decisional competence: if they disagree with her expressed desires concerning her own care for example, her opposition to abortion, or refusal of medication or bed rest or believe her choices put her fetus at unacceptable risk, they may be motivated to overestimate her level of decisional impairment, thereby justifying paternalistically overriding her expressed wishes. Douglas Diekema points out that decisional capacity is not a threshold capacity, and that it may fluctuate with timing, context, and type of decision.
Hence, in settling on how much paternalism is appropriate in managing a decisionally impaired patient, doctors have a responsibility to try to find a time and approach that will promote and assist rather than foreclose the possibility of the patient's meaningful autonomous participation in medical decision making.
Facilitating patients' autonomy in reproductive decision-making while protecting their best interests is perhaps especially challenging in cases where mood or personality disorders may erratically influence decision-making capacity e. Zalpuri et al. This might include education, creative forms of involvement in decision-making from loved ones, postponing a medical decision until after psychotropic medication has had time to become effective, accommodating a patient's special needs for an environment conducive to making a decision, etc.
The presence of a fetus should not serve as ground for detracting from our duty to protect a pregnant woman's right to participate in decisions about her own care to whatever extent she is capable which is not to say that paternalistic interventions on behalf of her or her fetus's welfare are never appropriate for decisionally impaired women.
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When a pregnant woman refuses an intervention that doctors judge provides a substantial benefit or life-saving intervention for her fetus, is overriding her refusal ever ethically justified? It is typically a sacrosanct principle in medical ethics that patients have an absolute right to refuse medical interventions, including life-saving interventions, if they make an autonomous, informed, competent choice to do so. However, in the case of pregnant women, this principle has been questioned and sometimes violated by force in the name of protecting the fetus. Examples have included forced cesarean deliveries, mandatory HIV testing, and life-saving blood transfusions performed despite religious objections.
The case of Angela Carder, a year-old woman who had cancer that had gone into remission but recurred during her pregnancy, brought these issues to a head. Fully competent, Carder made clear that she wanted everything possible done to save her life. Feeling a little bit lost? The Pregnancy Encyclopedia has the answers to all your questions, including the ones you haven't even thought of yet. From early pregnancy symptoms such as morning sickness to having a baby and breastfeeding, The Pregnancy Encyclopedia covers everything that you need to know. Top experts in the pregnancy field offer up encyclopedic knowledge on every topic from trying for a baby right through to caring for your newborn up to 3 months and everything in between, including pregnancy symptoms.
Department of Justice. Equal Employment Opportunity Commission. Department of Labor. Employers may not refuse to hire, refuse to promote, or fire a pregnant employee because of her pregnancy. Moreover, experts warn that the person's pregnancy can not be any factor in the action taken. If the pregnancy was a consideration in any way, shape, or form, then the employer is liable. Employers have to provide the same benefits to all employees, whether or not they are pregnant, although they do not have to provide additional benefits to pregnant workers. Employers may not refuse to adjust workloads for a pregnant employee if they do so for a worker who is not pregnant but claims some other disability or mitigating circumstance.
Employers may not discriminate against staff members just because they might get pregnant. Employers may not discriminate against employees who 1 have had an abortion, or 2 are considering having an abortion. Employers may not forbid a pregnant employee from continuing to work if she wants to and is physically capable of doing all tasks associated with the work. Employers may not evaluate pregnant and nonpregnant employees differently. This is especially true when the employer has chosen to reduce the employee's work load in response to the pregnancy. Employers have a responsibility to make sure that pregnant employees are not excluded from taking part in the normal office environment, since such exclusions can have a detrimental impact on the employee's cognizance of important work-related issues.
Employers may not threaten to fire an employee because of her pregnancy or potential pregnancy. Employers are not allowed to reassign employees to lower-paying positions because of pregnancy.
Similarly, employers may not change a worker's job description and then eliminate the new job via reorganization. Employers may not engage in discriminatory practices against men whose wives or partners become pregnant. It should be noted, however, that application of this law may vary from state to state, since states have different views of the rights of married and unmarried couples.
Employers can not demand medical notes from a pregnant woman's doctor concerning her work status if they do not require similar documentation from doctors of other employees who have short-term disabilities. Human Resource Management. Prentice Hall, Lindemann, Barbara.
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