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As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, 150 pioneering hospitals, hospices, and clinics in the U.S. and around the world are now providing perinatal hospice/palliative care for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth.
A perinatal hospice approach walks with these families on their journey through pregnancy, birth, and death, honoring the baby as well as the baby's family. Perinatal hospice is not a place; it is more a frame of mind. It is a way of caring for the pregnant mother, the baby, the father, and all involved with dignity and love. Even in areas without a formal program, parents can create a loving experience for themselves and their baby, and health professionals and family and friends can offer support in the spirit of hospice
Legislating Lies: Kansas and Other States Pass Laws Permitting Doctors to Lie to Pregnant Patients About Prenatal Diagnoses
The ongoing war on reproductive rights in the United States is so sweeping that I’m constantly uncovering a new facet of it, appalling in its grossness and determination to strip pregnant people of all individual freedom and autonomy. Odd, coming from conservatives who claim to want smaller government; evidently tight governmental controls are perfectly acceptable when it comes to people who can get pregnant, who will clearly run into trouble if allowed to make their own medical decisions.
Or, it turns out, receive factually correct information about their diagnoses. In Kansas, there’s a clause buried in an anti-choice bill that would absolve doctors of legal liability if they lie to patients about prenatal diagnoses. That means that an anti-abortion doctor could receive test results and decide not to pass them on, or lie about their nature, which means that pregnant patients might not find out about fetal abnormalities until they become dangerously ill late in pregnancy, or until delivery, when they learn that the baby has significant health problems'
Abstract This paper considers the financial burden of parents caring for severely disabled children. A model to predict parents' out-of-pocket expenses and caregiving time demands is described..
IN THE UNITED STATES, an estimated 10-15 percent of all children have a chronic illness, and 1-2
percent have a severe chronic illness (1). Because
the care of these children is often demanding and
expensive, many families face financial difficulties....children limited in their activities use
more medical services than other children, especially hospital-based services and nonphysician
health services, and that out-of-pocket expenses
were two to three times higher.
The Ashley Treatment refers to a controversial set of medical procedures undergone by a Seattle child, "Ashley X". Ashley, born in 1997, has severe developmental disabilities due to static encephalopathy of unknown etiology; she is assumed to be at an infant level mentally and physically. The treatment included growth attenuation via estrogen therapy; hysterectomy, bilateral breast bud removal, and appendectomy. The principal purpose of the treatment was to improve Ashley's quality of life by limiting her growth in size, eliminating menstrual cramps and bleeding, and preventing discomfort from large breasts. The combination of the surgery and the estrogen therapy attracted much public comment and ethical analysis in early 2007, both supportive and condemning. The hospital later admitted that the surgery was illegal and should only have been performed after a court order, a position that is disagreed upon by the attorney of Ashley's family. Ashley's parents granted their first interview (in writing) to CNN Health in March 2008.
eu·gen·ics [yoo-jen-iks] Show IPA noun, ( used with a singular verb ) the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics)