The Perinatal Hospice: Allowing Parents to be Parents

The Perinatal Hospice: Allowing Parents to be Parents | Charlotte Lozier Institute: Perinatology– also known as maternal fetal medicine—is that branch of obstetrics  concerned with the care of mother and fetus and the handling of high-risk pregnancies.

In recent yeatrs, perinatologists have been incorporating into their practice a new concept in perinatal care called the “perinatal hospice.” This care originated in 1996 with the controversy over “partial-birth abortion.” This abortion method involved the surgical procedure where the baby would be delivered to the shoulders as a breech, then deliberately held in place while a scissors or other sharp instrument was inserted through the baby’s posterior skull into the brain resulting in death. Many perinatologists believed this procedure so horrible that they sought to find a better way to care for our patients facing the hardest circumstances.

Perinatal hospice is the prenatal diagnosis of a terminally ill fetus in-utero leading to perinatal hospice as part of the continuum of end-of-life care. . . .  Many of the hospice principles were successfully applied in perinatal hospice. The emphasis is on affirming life by care for the loved one, yet regarding dying as a normal part of life. A conscious effort is made to neither hasten death nor prolong dying. The team stresses values beyond the mere physical needs of the dying individual and allows the parents to “parent” their child for whatever time they are allowed. The family is supported in their medical, emotional, and spiritual needs through an organized, multidisciplinary team that cares for them after the death of the loved child during the period of grief.
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"You have a choice to make"

While parents are not prepared to hear a troubling diagnosis for their child, Bernadette and Phil were even more unprepared for how differently this pregnancy would be treated than the first seven.

...After a long series of questions probing their health, eating habits and family history, the Smith's finally received a diagnosis for Hannah: Trisomy 18. The genetic disorder, also known as Edward's Syndrome, is caused by an extra copy of a chromosome in a person's DNA. The disorder can cause several types of birth defects, and according to the National Institutes of Health only half of unborn babies diagnosed survive the birth process, and those who do survive have an extremely poor prognosis.

Bernadette said the specialist told her that Hannah had a grim outlook and would either die during the pregnancy or would die shortly after birth. The specialist told the couple bluntly that they had a "choice" to make. Bernadette said that though the specialist didn't mention it, everyone in the room knew that "choice" meant abortion. Phil said very clearly that they would not abort their child, but that was not good enough for the specialist.

"Then the specialist said to just me, ignoring Phil, 'You have a choice to make,'" Bernadette said. Right to Life of Michigan

The impact of eugenic abortion on parents and families

New medical technologies, including a new test for Down syndrome, have increased the ability of doctors to test for disabilities and genetic disorders before birth. Parents usually see these tests as a way to assure themselves that their unborn child will be healthy. Medical professionals and scientists, on the other hand, often see the tests as a tool to find and eliminate "defects" through abortion.

This article from the Eliot Institute is the first in a three-part series on prenatal testing and abortion. Part 1 looks at what available research reveals about the impact of eugenic abortion on parents and families. Parts 2 and 3 will discuss how pressure and coercion from the medical community are often used to bring about these abortions, and what we can do to help parents who are facing a negative prenatal diagnosis.

Editor: You may be wondering, what's this article doing here? Why isn't it on one of BFL's other blogs that deal with abortion? Here's why: Eugenic abortion -- also known as "therapeutic" abortion, done when parents receive a poor prenatal diagnosis -- is where the issues of abortion and euthanasia meet. We're currently updating our LIFT manual to include a section on perinatal hospice and ministry to the disabled. That's why we've been including articles like this on this blog for the past few months.

Book: A Gift in Time

When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, A Gift of Time walks them step-by-step through this challenging and emotional experience -- from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby's birth and death.

A Gift of Time also offers inspiration and reassurance through the memories of numerous parents who have loved a child who did not survive, including Kristin Koning whose story is also featured in A Unique Journey on BFL's website.

Full of practical suggestions for parents and for caregivers, A Gift of Time also features the innovative concept of perinatal hospice and palliative care. Caring and thoughtful, the book helps parents embrace the extraordinary time they will have with their child.

Get to Know: The International Down Syndrome Coalition for Life

The IDSC For Life believes ALL life is precious. Many of us are parents of individuals who happen to have Down syndrome. Most of us learned of the high termination rate of babies in utero, when our children were born. Some of us found out that our children had Down syndrome while we were pregnant, and were pressured to abort the baby. Some of us realized the extent to which the abortion issue is used by those who want to “clean out” the gene pool.

What ever our path, it led us to turn to advocacy groups to ask them what they were doing about the termination rate of children who happen to have Down syndrome. Unfortunately, the National Down Syndrome Society, the National Down Syndrome Congress, and the ARC, who all advocate for individuals who happen to have Down syndrome, informed all of us, that they had a position “to not have a position.”

Baby Isaiah Case - Euthanasia or not?

The case of Baby Isaiah May has been discussed in Canada and internationally. Baby Isaiah was born with the umbilical cord around his neck after a 40 [hour?] labour in Alberta. He was not breathing when he was born but was revived and sent to the Stollery Children's hospital in Edmonton, Alberta. After approximately 90 days of receiving care, the parents of Baby Isaiah - Rebecca and Isaac May, were told the hospital would withdraw his ventilator.

The parents went to court to request another 90 days of care to give Baby Isaiah a chance to further improve. When speaking with Rebecca May, she made it very clear that they hoped to be able to bring Isaiah home and care for him. She understood that Isaiah may not survive very long and if he survived, that he may be profoundly disabled, but she was willing to care for him and love him, no matter what happened.

The Euthanasia Prevention Coalition has supported the wish of the May family to give Baby Isaiah a chance to improve to the point where they could bring him home. The very first email we sent out to support the family stated that if Baby Isaiah were removed from the ventilator, that if he died, it would not be euthanasia but rather a natural death. This comment remains correct. The reason the Euthanasia Prevention Coalition is supporting the May family is that the precedent that would be set if the court did withdraw the ventilator against the wishes of the family would have very wide ramifications.

Baby RB: when is it right to allow a child to die?

A loving father last week abandoned a court battle to save his disabled child’s life. Why did he change his mind and what wider ethical questions has this tragic case raised? Telegraph

Editor: A thoughtful article. Was this euthanasia? It seems to me this was a case of the underlying condition being the cause of death, and not the act of removing life support. Agree? Disagree?

Rationing Care at the Beginning of Life?

In the course of the debate over health care reform, some of the political rhetoric has focused on "rationing" and the idea of how much money can or should be spent on someone at the end of his or her life. But as care evolves, similar debates may someday surround how much can be spent at life's beginning. Few cases illustrate this as starkly as a baby born prematurely at 21 weeks and five days in Britain last month, who died as doctors declined to resuscitate him. ABC News

End-of-Life Decisions in Dutch Neonatal Intensive Care Units

Study in the Archives of Pediatric and Adolescent Medicine:

Setting: The 10 neonatal intensive care units in the Netherlands from October 2005 to September 2006.

Patients: All 367 newborn infants who died in the first 2 months of life in Dutch neonatal intensive care units. Adequate documentation was available in 359 deaths.

Results: An end-of-life decision preceded death in 95% of cases, and in 5% treatment was continued until death. Of all of the deaths, 58% were classified as having no chance of survival and 42% were stabilized newborns with poor prognoses. Withdrawal of life-sustaining therapy was the main mode of death in both groups. One case of deliberate ending of life was found. In 92% of newborns with poor prognoses, end-of-life decisions were based on patients' future quality of life and mainly concerned future suffering. Considerations regarding the infant's present state were made in 44% of infants.

Conclusions: Virtually all deaths in Dutch neonatal intensive care units are preceded by the decision to withdraw life-sustaining treatment and many decisions are based on future quality of life. The decision to deliberately end the life of a newborn may occur less frequently than was previously assumed.

Editor: The main researcher, Dr. Eduard Verhagen, has spoken about his experiences as a doctor who administers lethal injections to babies in this Times Online article: 'In the baby's last seconds you see the pain relax and then they fall asleep.' How objective is he in this study? And how does he differentiate between 'deliberate ending of life' and 'withdrawal of life-sustaining therapy'? See also Conflicts About End-of-Life Decisions in NICUs in the Netherlands.

Choosing Thomas

Facing death can be hardest for a family expecting new life. Follow T.K. and Deidrea Lauxs journey after they learn that their unborn son has a genetic disorder called Trisomy 13. They hope the intimate look helps others understand and cope with infant loss. YouTube

A grief conserved

Perinatal hospice offers an alternative to the trauma of aborting a disabled child. World

Baby Faith Dies at 93 Days

Faith Hope Walker passed away peacefully this weekend in the arms of her mother Myah. Faith was born with a condition called anencephaly, in which a portion of the child’s brain fails to fully develop. Myah was pressured by hospital staff to have an abortion. Doctors told her that Faith was alive only because "she was attached" to her mother and that even if she survived to birth, she would be neither able to hear nor see. She refused. “For some reason I had to give the doctors my decision over and over again, which was frustrating. One doctor asked, 'Can I ask why you want to continue this pregnancy?' I guess some people are baffled by unconditional love.” LifeSiteNews, Myah's blog

Layla's Legacy - A True Story About the Value of Life

Bethany Christian Services often gets involved in tough pregnancies with hearts and hands of compassion. This story about Layla is sure to encourage experienced champions of life and stoic pro-choice people of the power of love and the value of life. Layla's Story

A Unique Journey

Something about the 15-week-old fetus didn't look right. Not certain what was wrong, the doctor began to run through a list of dire scenarios for the parents. His predictions proved to be correct, so should they have ended the pregnancy early? Read-Only, Print Version (use as a bulletin insert for your church!), Mike and Kristin's Full Story with Photos, Video shown at Noah's Memorial Service

Perinatal Hospice: Giving Terminally Ill Babies and Their Families an Alternative to Abortion

“Perinatal hospices" are a relatively new but important development whose noble goal it is to support parents during the emotional turmoil that is a part of pregnancy and birth of babies diagnosed with serious, if not necessarily always fatal, disorders. They provide an alternative to the "solution" of abortion, a decision that often only heightens the guilt of parents who may already be blaming themselves for producing an “imperfect" child. The perinatal hospice is really an advance in the care of pregnant women. It is a grueling time for them; they're grieving yet having to care for the baby at the same time. We follow the families' lead, and provide the types of support they need. Experience has also shown that carrying the baby to term helps parents deal with the grief that is inevitable when a child dies. If they abort the baby, the parents will always wonder whether the diagnosis was correct - - whether they murdered a healthy child. But if the baby is born, they are able to hold the child, videotape him, baptize him, and even take him home if he lives for a short time. They know that they did everything they could. They gave God a chance to heal the baby; gave every opportunity for a miracle. Perinatal Hospice Abortion Alternative

Newborns in Need

This organization is all about newborn and premature sick, needy, stillborn, or terminal babies and how we can help them when they can't help themselves. This website is to disseminate information and empower others to assist in this critical need. Their greatest provision is quilts, afghans, burial layettes and preemie garments (from 2# babies). On-going needs include (but aren’t limited to) money, fabric, sewing notions, and time – for those of you seasoned knitters, crocheters, or quilters. NIN Grand Rapids, MI Chapter, NIN Other National Chapters

Twelve Ways to Help the Bereaved (From Child Loss)

• Be there
• Tolerate silences
• Listen in an accepting and non-judgmental way
• Avoid the use of clichés such as "Think of all the good times", "You can always have another child", etc.
• Encouraging them to talk about the deceased
• Be practical in your support by offering care for living children through funeral planning/arrangements, etc., or providing meals
• Mention the deceased child’s name
• Accept that tears are normal and healthy
• Avoid filling in conversations with a lot of outside news.
• Remember that grief may take many years to work through
• Acknowledge birthdays, death dates, anniversaries, etc.
• Accept that you cannot make them feel better

Adapted from: The Centre for Grief Education, McCulloch House, Monash Medical Centre, 246 Clayton Road, CLAYTON VIC 3168 Australia

Tears and Laughter

Crying and laughing are beneficial to us in a variety of ways and are important coping tools for us on our grief journey. Both are necessary for us to achieve balance in our healing process. Tears and Laughter

Helping Yourself Heal When Your Child Dies

Healing Through Child Death

Uncommon Loss: Mothers Who Grieve the Death of a Child

Every story of losing a child is unique and painful, and every mother grieves in her own way. Is it harder to lose a child suddenly or to lose her after a long illness? Is it more difficult to lose a baby and mourn the life that never really started, or to lose an older child or adult and mourn what was? There are no answers to these questions. But there are many common threads in the experience of losing a child, say bereaved mothers and bereavement experts. Mothers Grieving the Death of a Child