Study: Parents of Kids With Disabilities Beating Abortion Culture

Study: Parents of Kids With Disabilities Beating Abortion Culture | LifeNews.com: A new study published this week in the highly accredited pediatric medicine journal, Pediatrics, reveals social networks are trumping the medical establishment. The study is entitled The Experience of Families with Children with Trisomy 13 and 18 in Social Networks. It shows families are proving to the medical community that their children’s lives, no matter how long, have value and are worthy of care and treatment.

From the abstract: "Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). . . . Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life."

Free ebook: Weak and Loved

Avery's Bucket List: Blog for baby dying of spinal muscular atrophy

Avery's Bucket List: Parents pen blog for baby dying of spinal muscular atrophy - HealthPop - CBS News: At only 5 months old, Avery Canahuati has already had her first kiss, her first tattoo (temporary), and her first trip to college. That's because after their daughter was diagnosed with an incurable genetic disorder and told she had only 13 months, at best, left to live, Laura and Michael Canahuati decided to launch Avery's Bucket List.

Update: Baby with bucket list dies

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Get to Know: The Initiative for Pediatric Palliative Care

Initiative for Pediatric Palliative Care (IPPC): Curriculum: IPPC retreats offer a unique opportunity for nurses, physicians, social workers, chaplin's, child life specialists and allied health professionals to learn side-by-side with parents of children with life threatening conditions.

Editor: I don't know what their stance is on abortion or euthanasia.

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Book review (+ free offer!): Miracle for Jen

Miracle for Jen, by Linda Barrick with John Perry (Tyndale House) is the account of the fateful accident and subsequent recovery of a young woman who is extraordinary. You could sum it up by saying, "Jen Barrick was a teenager when her life turned upside down through a horrible brain injury." Or you could say, "Jen Barrick was a teenager when God answered her prayers."

It all depends on your perspective, and Jen prefers the latter. Her story must be read to be believed, but ultimately it's not hard to believe.



How could multiple skull fractures resulting in damage to every part of her brain be an answer to prayer? It is if your prayer was for greater intimacy with God and impact for Him.

It's impossible to say how the injury affected her relationship with God, but her mother Linda and other observers documented how, upon coming out of her coma, Jen clearly and cogently expressed herself in prayer and praise to God, as though He was in the room with her. And that ability continues to this day.

Communication with family and friends came less smoothly. In fact, Jen struggled to vocalize her thoughts as severe memory loss hampered her recovery for several months. Yet Bible verses and hymn lyrics would flow effortlessly from her mouth, some that her mother didn't know she had memorized prior to the accident.

While Jen delighted in this new-found freedom, Linda grieved over her daughter's lost capacities. Would she ever go back to school? Would she return to cheerleading or singing in the choir? Would she graduate and have a normal life? Making those old hopes and plans reality seemed impossible. God could heal her, but would He? Would the old Jen return?

Linda began to accept a new reality when she read Jen's prayer journals. What started as an attempt to reconnect with the "old" Jen became a means of embracing the new one. Four months before the crash, she had written,

God, I want You to be my everything. Continue to grow my faith and allow me to know You like never before!

Four days before:

We all want the testimony, but we'd rather skip the test that give us one.

Jen has had quite a testimony since her accident, sharing with groups small and large the miracle of knowing God. This book does not candy-coat the daily struggles along the way, or pretend that one answered prayer alleviates all doubts. Linda writes:

To help me survive the long, hard days I began telling myself over and over that this life on earth is only a dot on the timeline of history, leading to God's eternity where we will experience unparalleled joy. Off and on I'd repeat that truth out loud, so Jen nicknamed me Polka Dot, evidence of one of her first short-term memory triumphs. Every time she called me Polka Dot, it reminded all of us that this difficult and challenging life is a moment in time anticipating life in heaven, with no pain or sorrow, just ahead.

Tucking Jen in bed at night became a family ritual. . . . I often prayed, "Lord, please connect a new pathway in Jen's brain tonight." 

When it was Jen's turn to pray, she was always full of thanksgiving and praise. One night, she astounded us all when she prayed, "Lord, did I meet all of Your expectations today? Did I fulfill all that You had for me to do?"

Wow! It had never crossed my mind to pray a prayer like that. I'd been so busy begging God for healing and help that I had forgotten that this life is not about me or my family's comfort; it is about God and His plan. Jen had a completely different perspective from the rest of us. She knew that God had left her on this earth for a reason. He had things for her to do!

I also appreciate that this book highlights the ministry of caregivers -- their necessity and vital importance. Because Jen wasn't the only one injured in the accident -- both Linda and Jen's dad Andy were severely injured as well -- friends and family members had to step in to provide round-the-clock assistance. Members of Thomas Road Baptist Church in Lynchburg, VA (yes, that one), were not only relied upon for meals and visits, but for long-term personal care.

Win a copy!
This book would make a great gift for caregivers and is an all-around inspiring memoir for church library shelves. In fact, be the first to email me your name and address and I'll send you a certificate for a free copy!

TyndaleHouse Publishers provided me with a complimentary copy of this book.

Journal editor defends pro-infanticide piece

LifeSiteNews: The editor of an ethics journal that recently published an article advocating infanticide (what the authors call “post-birth abortion”), has responded to widespread criticism by pointing out that promoting the killing of newborns is nothing new: in fact, in the Netherlands infant euthanasia is already legal and practiced.

Editor Julian Savulescu also criticizes what he calls the “hate speech” directed at the authors of the article, arguing that the public’s response to the piece shows that “proper academic discussion and freedom are under threat from fanatics opposed to the very values of a liberal society.”

In the journal article Alberto Giubilin, a philosopher from the University of Milan, and Francesca Minerva, an ethicist from the University of Melbourne, made the case that “after-birth abortion” should be permissible in all the cases where abortion is, including cases where the newborn is perfectly healthy. They base their argument on the premise that the unborn baby and the newborn do not have the moral status of actual persons and are consequently “morally irrelevant.”

Editor: I agree with Savulescu that abusive language is not helpful, but for a idfferent reason. It betrays our cause. "Academic freedom" aside, we can come up with arguments opposing infanticide, can't we? We don't need to resort to name-calling.  In fact, the Bible says "hate speech" is as destructive as murder (see Matthew 5:19-22 and James 3:8-10).

Weak and Loved

Weak and Loved: It was a time of abundant, noisy blessings for Emily Cook. Five children, age 5 and younger, energetically consumed her food, her time, and her heart. Then, in the fall of 2008, this loud and happy life was shattered by a deafening silence. Bouncy four-year-old Aggie was stopped in her tracks by a seizure--It was to be the first of many.

This story includes no clichés or easy answers, and it is not an attempt to answer complicated questions of human suffering. Rather, it is a demonstration of God's faithfulness toward one sick child and her imperfect mother: both weak, but both loved. Aggie had a brain tumor that disrupted her young life; her mother’s sin and selfishness disrupted her best attempts to care for her. Written from the perspective of a mother who suffers with her child, Weak and Loved allows readers to experience the struggles of faith and encouragement of God. Readers will enter the difficult, earthy, and sometimes humorous world of a sick child, and be pleased to find the beauty of God's love in Christ even there.

Follow Emily's blog

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'Baby Joseph,' focus of treatment dispute, dies in his sleep

Joseph Maraachli, the infant who became the center of an international end-of-life debate, died peacefully in his sleep at his Windsor, Ontario, home, a spokesperson for the family said Wednesday.

Joseph's family had refused to accept a recommendation by a Canadian hospital to remove the boy's breathing tube and allow him to die. In March, the infant received a tracheotomy at a children's hospital in St. Louis, Missouri. "By providing him with this common palliative procedure, we've given Joseph the chance to go home and be with his family after spending so much of his young life in the hospital," said Dr. Robert Wilmott, chief of pediatrics for SSM Cardinal Glennon Children's Medical Center in St. Louis.

In court papers, doctors in Canada said there was no hope for recovery. They would not perform a tracheotomy because they considered it to be invasive and not recommended for patients who require a long-term breathing machine.

Parents Moe and Sana Maraachli refused to accept the recommendation. The Maraachlis' daughter, Zeina, had died at home in 2002 after a tracheotomy after suffering similar complications, and the family wanted to offer the same care to their son.Joseph was "very peaceful, in no pain whatsoever, no distress," when he died.

The family countered assertions that Joseph was nonresponsive, blind and deaf, she said. Instead, the boy could hear the parents' voices and look for them. The family believed that, after a tracheotomy, Joseph could be freed from machinery. The parents said that they, rather than physicians, should make a judgment on quality of life.

Nurses helped the family provide 24-hour care for Joseph in his final months. The child was on almost no medication and apparently was in no pain. CNN

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.

Belgian proposal to expand euthanasia

Three members of the Belgian House of Representatives have tabled draft legislation for euthanizing people suffering from dementia. They want to allow people to make a pro-euthanasia advance directive before the onset of dementia.

The same authors have also filed a bill on euthanasia of minors. They propose that a minor with the faculty of discernment (12 years) should be able to request euthanasia under the same conditions as an adult. The decision would be made in consultation with parents and a medical team comprising at least the attending physician, nurse practitioner, a child psychologist or psychiatrist and a social worker. If the minor has no power of discernment, parents could make the request for euthanasia themselves.

Nazi war crimes provide lessons in medical ethics

amednews: Nazi war crimes provide lessons in medical ethics :: Dec. 6, 2010 ... American Medical News: German physicians and scientists helped carry out the regime's policies. What can today's doctors learn from this tragic history?

In the 1930s and 1940s, hundreds of German medical professionals took part in a euthanasia program that targeted children younger than 3 years old with severe birth defects. Doctors and midwives were required to report such cases, and parents were told that advanced care could be given to children at 30 special pediatric wards around Germany. Instead, the children were murdered, usually with sedatives. Physicians drew up falsified death certificates, and parents were told their children died of natural causes such as pneumonia. An estimated 5,000 children fell victim to physicians and other medical professionals who went from healers to killers.

These actions were far from the exception in Nazi Germany. As evil as these actions appear in retrospect, they arose out of a highly sophisticated German medical culture. More than half of the Nobel Prizes that were awarded in science through the 1930s went to Germans. Where German medicine then went wrong is that physicians began to view improving the health of the "body politic" as a whole as their principal aim.

It Takes a Long Time to Starve a Severely Disabled Infant to Death by Withdrawing Medically-Supplied Nutrition

It Takes a Long Time to Starve a Severely Disabled Infant to Death by Withdrawing Medically-Supplied Nutrition � Secondhand Smoke | A First Things Blog: A disturbing study has come out about how long it takes to starve an infant to death. From the study:

Neonatal survival after withdrawal of artificial hydration and nutrition can last up to 26 days. . . . Although physical distress is not apparent in the infants, the psychological distress of parents and clinicians builds with the length of survival. These babies live much, much longer than anybody expects. I think that neonatologists and nurses and palliative care clinicians need to be alerted to this. The time between withdrawal of feeding and end of life is something that is not predictable, and you need to be cautioned very strongly about that if you are going to do this work.

These infants did not die from their underlying conditions. The study further wants infants being dehydrated to become research subjects on the physiological processes of being starved.

Editor: Dr. Mengele would be proud.

Mentally handicapped Danes lobotomised until 1983

AFP: Mentally handicapped Danes lobotomised until 1983: historian: Many mentally handicapped Danes, including children, were lobotomised between 1947 and 1983, and many died from the operation, a historian behind a soon-to-be-published book on the topic told Danish media Thursday. 'The results of such operations generally were not good, and some 7.6 percent did not survive. What happened with people with mental handicaps is worse than what happened with psychiatric patients,' he said, referring to many operations performed on children as young as six years of age, even though their brains were not yet completely developed.

Related: Bulgarian mistreatment of disabled revealed

Belgian nurses appear to support euthanasia

Do Belgian paediatric nurses really want to be able to euthanase children with terminal illnesses? A recent article in the American Journal of Critical Care based on a survey of 141 nurses suggests that this is the case.

Euthanasia for children is illegal in Belgium. But euthanasia for adults is not, although only a doctor can carry it out. What the survey found is that "a large majority of those nurses support a change in the law on euthanasia that would make life termination in children possible" and that they should be involved in the decision-making process. Otherwise they would experience "moral distress" at having to carry out someone else's instructions.

However, when the article is examined more carefully, the conclusions may not be warranted. The survey found that 85% of nurses had participated in an "end-of-life" decision within the past two years. But the vast majority of these end-of-life decisions involved non-treatment or alleviation of pain. Only 19% involved "use of life-ending drugs".

Nonetheless, the survey will fuel fears that doctors and nurses are actively euthanasing sick children. According to the survey, "Only 6% of nurses found it always ethically wrong to hasten the death of a child by administering lethal drugs; most nurses (78%) reported they were prepared to cooperate in administering life-ending drugs in some cases." BioEdge

Russian Call For 'Postnatal Abortion' Sparks Furor Among Parents Of Disabled

In late December, Snezhana Mitina received a tearful phone call from her friend Svetlana. Sobbing, Svetlana explained she had just read a newspaper article calling for babies with mental disabilities to be killed at birth. The author, Aleksandr Nikonov, used the word "debil" -- a deeply offensive term in Russian -- to characterize such children. He argued that parents should have the right to euthanize newborns diagnosed with mental retardation and other developmental disabilities. The article, which ran under the headline "Finish Them Off, So They Don't Suffer," went on to describe what Nikonov termed "postnatal abortion" as an act of mercy. Radio Free Europe, The Caleb Report

Medical End-of-Life Decisions in Children in Flanders, Belgium

Medical end-of-life decisions are frequent in minors in Flanders, Belgium. Whereas parents were involved in most end-of-life decisions, the patients themselves were involved much less frequently, even when the ending of their lives was intended. At the time of decision making, patients were often comatose or the physicians deemed them incompetent or too young to be involved. Archives of Pediatrics & Adolescent Med

Doctors May Be Euthanizing Dying Children at Parents’ Request

A study published in the March edition of the Archives of Pediatrics & Adolescent Medicine suggests that a few physicians may have killed children who were very sick by giving them fatal morphine doses, after the parents had requested euthanasia. Dr. Joanne Wolfe, a palliative pain specialist, interviewed 141 parents of children who died of cancer in order to explore the parents' motivation in considering and enquiring about hastening their child's death.

Dr. Wolfe observed that the child's experience of pain affects hastening death considerations by the parents, but many are not given adequate information about the legal options for pain relief, which can include sedating children into unconsciousness. "Several studies indicate that both caregivers and physicians tend to confuse the unintended adverse effects of intensive symptom management with the intentional hastening of death. In our sample, the 3 families who reported intentionally hastening their child's death described doing so using morphine, which raises the question of whether they had misinterpreted the physicians' intentions. In fact, evidence indicates that opioids can be used safely at the end of life and that their effect on survival, if any, is negligible." LifeSiteNews

More surprises in Dutch euthanasia of infants

For people outside the Netherlands, the most surprising thing about legally tolerated non-voluntary euthanasia of infants is that it happens at all. But for Dutch doctors, the surprise is that reports of it are far lower than the quota.

It was expected that 15–20 cases would be reported. To date, however, only one case has surfaced. There appear to be several reasons. First of all, the authorities may have over-estimated the number of infant deaths based on deficient data from previous years. Some abortions had also been wrongly reported as infant euthanasia. Improved ultrasound technology now allows doctors to abort defective babies before birth, making euthanasia unnecessary. There has been an increase in the use of “terminal sedation,” which is not regarded as euthanasia, even if it causes the death of the patient. “It is likely that at least some cases of active ending of life occurred during the past years,” the authors admit. So why have the doctors kept it quiet? BioEdge, study abstract

Ethics at the end of life

A recent study of dying children in Boston suggests doctors ended their lives with morphine, sometimes at the urging of parents. Bioethicist Jeffrey Kahn talks about the dilemmas faced by doctors who are in a position to assist a suicide or hasten death. MPR

Baby Isaiah Dies with Family on Parents' Terms

Baby Isaiah James May died yesterday afternoon in the arms of his parents. After enduring a legal fight to keep doctors from forcing death upon their child, the May family bade farewell to their son on their own terms after becoming convinced that there was no chance of his recovery. According to Alex Schadenberg of the Euthanasia Prevention Coalition, the tragic case “has probably turned out the best it possibly could have turned out.”

"All along it was our hope that Isaiah's condition would brighten and improve. It has not,” his parents stated. “The decision that has now been made may be incomprehensible. But it has been made knowing that we did everything possible to find meaningful answers to our questions and that all reasonable alternatives were fully explored and carefully considered. We very much believe that life is a gift from God and that our son's inherent value and worth as a human being is not diminished by the number of days recorded in this world. Isaiah has reminded all of us once again that life is very precious and fragile.”

Schadenberg emphasized that there is “nothing morally wrong” with the parents' decision to remove the child's respirator. “There was nothing done to this child to cause [his] death. [He] died a natural death, and that's exactly what we look for.” LifeSiteNews