AN INCREDIBLE STORY OF RECOVERY AND HOPE

I was watching ESPN’s Sports Center show with my husband when I commented on the smart female sportscaster Victoria Arlen who held her own with the male sportscasters. Then my husband told me she had an amazing story and I had to check it out for myself.

A LIFE-CHANGING ILLNESS

When she was 11 in 2006, Victoria Arlen developed two rare conditions: Transverse Myelitis (“a neurological disorder caused by inflammation of the spinal cord”) and Acute Disseminated Encephalomyelitis (” a neurological, immune-mediated disorder in which widespread inflammation of the central nervous system (brain and spinal cord) damages tissue known as white matter”) . 

According to her website, she quickly lost the ability to speak, eat, walk and move and slipped into a “vegetative state”. The doctors thought she was a lost cause. “Victoria spent nearly four years “locked” inside her own body completely aware of what was going on just unable to move or communicate.”

But she didn’t give up.

Amazingly, she was able to improve and according to the May 10, 2023 issue of People magazine:

After winning gold at the 2012 Paralympic Games and getting a job as one of the youngest reporters at ESPN, she spent year in physical therapy relearning to walk (something doctors thought she’d never be able to do)— and then dance, placing fifth on Dancing with the Stars in 2017.

By all accounts, Arlen had seemed to triumph over her tragedy.

THE RELAPSE

But on March 17, 2022, Victoria had a relapse-her worst fear.

But because her relapse of just the transverse myelitis was recognized early, doctors were able to treat her and prevent lasting paralysis. But her recovery was “grueling”, learning to sit up and take steps again with daily rehab.

She said ” I needed to prove to myself that I was going to be okay” and “”I keep believing in miracles I choose to have faith that I’m going to be okay, and I choose to have hope that things are going to continue to get better,

She continued to have nerve pain but is now back at ESPN’s Sports Center and says, ” “I’ve been given another second chance, and I make a conscious effort now more than ever to appreciate every single moment,” she says. “Because in the blink of an eye, it can be taken away.”

Her webpage reveals that:

“Victoria is also the Founder and Co- Chair of Victoria’s Victory Foundation, a nonprofit that assists those with mobility related disabilities. Since 2017, VVF over provided half a million dollars in scholarship funds to those who need it most.

Victoria’s book titled Locked In hit stores worldwide in August of 2018 as well as her 30 for 30 titled Locked In, that Victoria narrated and produced. Victoria continues to share her story on various speaking tours throughout the world.”

CONCLUSION

Ms. Arlen ends her story with an inspirational message that should touch all of us-especially healthcare providers:

“Heroes in real life don’t wear masks and capes. Sometimes they don’t stand out at all. But real heroes can save a life or many lives just by answering the call in their heart. In the darkest period of my life, when I couldn’t help myself, my heroes were there. … Sometimes we just need someone to lean over and whisper, ‘You can do it! (Emphasis added)

The National Association of Pro-Life Nurses: We Care About All Lives

Recently, I was contacted by a college political science professor who is writing a paper about “pro-choice and pro-life viewpoints” and she wanted to know more about the National Association of Pro-Life Nurses.

I was delighted and we had a long conversation about what motivates pro-life people-and especially nurses.

I told her about our National Association of Pro-life Nurses and the why and how we do what we do. Our motto since the organization began in the 1970s is “Take my hand, not my life”.

The professor seemed surprised that the pro-life movement is founded on caring rather than the common misperception of politics and political power.

Instead, as I told her, the pro-life movement is about helping people in crisis situations from conception to death and educating people about upholding the excellent, life-giving ethics and laws that protect all lives from conception to natural death.

It is also not about being judgmental but rather about truly caring and offering help to desperate people in crisis situations and the people around them before-or even after- a person has chosen abortion or is considering medically assisted suicide. (see “Pro-Life and Other Resources for Help and Information to Protect Human Life”)

And this works!

Many people are surprised when they find out that even NBC News admits that:

More than 2,500 crisis pregnancy centers operate in the country, outnumbering abortion clinics nearly 3 to 1 by some estimates. Critics, as well as supporters, have said the number of women seeking support at them has grown quickly in the 11 months since federal abortion rights were overturned, which resulted in the closing of abortion clinics in dozens of states. ” (Emphasis added)

And as pro-life nurses who care for everyone-not just in hospitals and crisis pregnancy centers, but also in prisons, at home in poor and sometimes dangerous areas, in homeless situations, etc., we are truly interested in helping instead of judging people.

Our message is “We Care” and I have yet to meet a pro-life nurse who isn’t also involved in some sort of volunteer work.

CONCLUSION

In my 50+ years as a nurse, I have worked in burn units, medical and surgical units, burn units, dialysis, intensive care, oncology (cancer), hospice and home health. I have also cared for relatives and friends with terminal illnesses, dementia, critical heart defects, cancer, disabilities, severe psychosis, suicide, drug addiction, teen pregnancy, etc. but never once was I tempted to end a life.

Just as doctors used to take the Hippocratic Oath that said ” I will not give a lethal drug to anyone if I am asked, nor
will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.”, new nurses used to take the Nightingale Pledge that said ” I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug.”

Unfortunately, today these oaths are little used or changed to allow for formerly illegal practices and this has harmed both professions and to the detriment of healthcare and public trust.

I have also been a newspaper reporter and writer for several publications but  in 2015, I started my blog “A Nurse’s Perspective on Life, Healthcare and Ethics” to report on the many healthcare ethics controversies and I often use my personal and professional stories to show resources and how to help people in difficult circumstances.

Most of all, I have seen the power of “I Care/We Care” to help people and their families at some of the most desperate times of their lives and I am proud to be a member of the National Association of Pro-life Nurses.

Please join us and/or follow NAPN on Facebook.

Pro-Life and Other Resources for Help and Information to Protect Human Life

There are many pro-life organizations that can help you or someone you are trying to help find information, referrals and/or other help with crucial decisions about vulnerable lives from conception to death. Here are many of them.

I am personally on the board of two of these organizations: HALO (Healthcare Advocacy and Leadership Organization) and National Association of Pro-life Nurses (NAPN) and have personally worked with many of the organizations on this list.

NATIONAL PRO-LIFE ORGANIZATIONS

The National Right to Life (NRLC) was formed in 1968 and is the largest and oldest pro-life organization in the United States. The mission of NRLC is “to protect and defend the most fundamental right of humankind, the right to life of every innocent human being from the beginning of life to natural death.” They have over 3,000 local chapters, which can be found in all 50 states.

American United for Life -“We strive for the day when all are welcomed throughout life and protected in law.”

American Life League-“Building a Culture of Life”

Charlotte Lozier Institute-“America’s #1 source for science, data, and medical research on the value of human life.”

Students for Life– “Impacting Campuses & Communities”

PRO-LIFE SITE TO HELP BOTH PATIENTS AND FAMILIES NAVIGATE THE HEALTHCARE SYSTEM

HALO (Healthcare Advocacy and Leadership Organization) -“Defending the lives and safety of persons facing the grave consequences of healthcare rationing and unethical practices, especially those at risk of euthanasia and assisted suicide.”

Please visit the Resources section that includes crucial information about “living wills”, ventilators, etc. and “is designed to help YOU navigate the complicated and sometimes perilous healthcare system. “

PRENANCY RESOURCE CENTERS

Carenet-“Acknowledging that every human life begins at conception and is worthy of protection, Care Net offers compassion, hope, and help to anyone considering abortion by presenting them with realistic alternatives and Christ-centered support through our life-affirming network of pregnancy centers, churches, organizations, and individuals. “

Birthright-“Birthright is a non-profit charitable organization that has been providing love and support for over 50 years to women facing unplanned pregnancies” and offers “free non-judgmental support 24/7

Abortion Pill Reversal-“Have you taken the first dose of the abortion pill? Do you regret your decision and wish you could reverse the effects of the abortion pill? We’re here for you!” ” Call our 24/7 Helpline: 1-877-558-0333″

Perinatal Hospice & Palliative Care-Continuing Your Pregnancy -“When Your Baby’s Life Is Expected to Be Brief “

PRO-LIFE MEDICAL AND NURSING ORGANIZATIONS

American Association of Pro-Life Obstetricians and Gynecologists  ~   Its membership is 85% OB/GYNS, about 15% Family Medicine, ER and other physicians who deal with reproductive health. It includes midwives, nurse practitioners, etc. who also deal with reproductive health, including pregnancy care center organizations. Membership helps to keep them abreast of what is happening in reproductive health.

American College of Pediatricians  –  “Pediatricians and Family Medicine physicians who deal in pediatrics, as well as other medical professionals who work in pediatrics.”

Association of American Physicians and Surgeons  -“Physicians of all specialties.”

Christian Medical and Dental Society  -“Christian physicians of any denomination, and Advanced Practice Clinicians of all specialties.”

National Association of Pro-life Nurses (NAPN)-We care for all lives from conception to the end of life. I encourage all nurses to join and every pro-life person to also visit our Facebook page for more news.

PRO-LIFE GROUPS FOR HELP AFTER ABORTION

Project Rachel – “It’s normal to grieve a pregnancy loss, including the loss of a child by abortion. It can form a hole in one’s heart, a hole so deep that sometimes it seems nothing can fill the emptiness. You are not alone.”

Project Joseph (St. Louis)-“Project Joseph – “a men’s only program through our Abortion Healing Ministry, provides healing and hope to men wounded by abortion.”      

 Elliott Institute was founded in 1988 by Dr. David Reardon, who conducts scientific, evidence-based research on abortion’s effects on women, men, families, and societies. They invest in research, education, and outreach. They are also dedicated to advocacy for women traumatized by abortion and how to provide healing support.

In addition, the Elliott Institute raises awareness about the injustices of coerced and forced abortions, referring to abortion as the “unchoice.”

HELP FOR PEOPLE CONSIDERING SUICIDE

988 Suicide & Crisis Lifeline-“The 988 Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week in the United States. We’re committed to improving crisis services and advancing suicide prevention by empowering individuals, advancing professional best practices, and building awareness.”

PRO-LIFE LEGAL GROUPS:

Center Against Forced Abortions – The Justice Foundation
The Justice Foundation’s “Center Against Forced Abortions” or “CAFA”- “was created to provide educational resources to empower women who are being forced, unduly pressured, or coerced into an unwanted abortion.”

Life Legal Defense Foundation-“Our mission is to give innocent and helpless human beings of any age, particularly babies in the womb, a trained and committed defense against the threat of death, and to support their advocates in the nation’s courtrooms.”

The Alliance Defending Freedom– “ADF is the world’s largest legal organization committed to protecting religious freedom, free speech, the sanctity of life, marriage and family, and parental rights.”

Thomas More Society – “For decades, we’ve passionately championed the causes of everyday individuals confronting remarkable injustices, from the sidewalks and town squares to the Supreme Court.”

American Center for Law and Justice-“Led by Chief Counsel Jay Sekulow, the ACLJ focuses on constitutional and human rights law worldwide. Based in Washington, D.C., with affiliated offices in Israel, Russia, Kenya, France, Pakistan, and Zimbabwe, the ACLJ is pro-life and dedicated to the ideal that religious freedom and freedom of speech are inalienable, God-given rights for all people. The ACLJ engages legal, legislative, and cultural issues by implementing an effective strategy of advocacy, education, and litigation that includes representing clients before the Supreme Court of the United States and international tribunals around the globe.”

DISABILITY GROUPS (some not formally against abortion)

The National Down Syndrome Congress on abortion-“National Down Syndrome Congress (NDSC) has long held that abortion for the sole reason that a fetus has Down syndrome borders on eugenics...We believe a better approach is to require healthcare providers to provide their patients with accurate, up-to-date information about the
realities of having Down syndrome in contemporary America; and, to promote full, meaningful inclusion of all people – with and without disabilities – in every aspect of society.” (Emphasis added)

National Down Syndrome Adoption Network-“Our mission is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”

Prenatal Partners for Life-“We are a group of concerned parents, medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents with a special needs child.”

Simon’s Law -“Simon’s Law says, “NO! No child’s medical chart should have a do not resuscitate order (DNR) and/or the withholding of life sustaining treatments without parental knowledge or consent…No child should be denied life sustaining treatment withheld by a medical professional or insurance provider. Our intent is to make each state a “Simon State” by stopping secret do not resuscitate (DNR) orders!”

Not dead Yet -“is “a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination.” (Emphasis added)

Journal of Neurotrauma Paper on Withdrawal of Treatment in Severe Traumatic Brain Injury

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing, especially if it is true that hearing is the last sense to go. And why not do it to respect the patient as a person?

Then one day a 17 year old young man I will call “Mike” was admitted to our ICU in a coma and on a ventilator after a horrific car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a “vegetable.” The doctor recommended that he not be resuscitated if his heart stopped.

But “Mike” didn’t die and almost 2 years later returned to our ICU fully recovered and told us that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed ‘Mike” was comatose!

After that, every nurse was told to treat all our coma patients as if they were fully awake. We were rewarded when several other coma patients later woke up.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris” in comas or “persistent vegetative states” who regained full or some consciousness with verbal and physical stimulation. I have also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate consciousness. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him

Since then, I have written several blogs on unexpected recoveries from severe brain injuries, most recently the 2018 blog “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover” and my 2020 blog “Surprising New Test for Predicting Recovery after Coma

However, there is now a new article in the Journal of Neurotrauma titled “Prognostication and Goals of Care Decisions in Severe Traumatic Brain Injury: A Survey of The Seattle International Severe Traumatic Brain Injury Consensus Conference Working Group” about a panel of 42 physicians and surgeons recognized for their expertise of traumatic brain injury that states:

“Overall, panelists felt that it would be beneficial for physicians to improve consensus on what constitutes an acceptable neurological outcome and what chance of achieving that outcome is acceptable. “Over 50% of panelists felt that if it was certain to be enduring, a vegetative state or lower severe disability would justify a withdrawal of care decision.” (Emphasis added)

In addition:

“92.7% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes a good or bad neurological outcome (Fig. 3A). Similarly, 95.1% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes an acceptable chance of achieving a good neurological outcome.” (All emphasis added)

RESPONSIBILITY FOR WITHDRAWAL OF CARE DECISIONS

As the article states:

“Although many would report that decision making following devastating TBI is the responsibility of well-informed substitute decision makers familiar with the wishes of a patient,12,25 our survey confirms that the relationship between clinicians and decision makers is complex. As our panelists recognize the marked influence that physicians have on aggressiveness of care, it would seem that in many cases physicians are actually the decision makers and that substitute decision makers are limited by the perceptions (communicated to them. (Emphasis added)

CONCLUSION

Legally, the issue of who makes the decision when treatment or care can be withdrawn as “medically futile” varies.

Often ethics committees are called in to review a situation. Sometimes, as in the Simon Crosier case, families can be unaware that treatment is being withdrawn.

For years, Texas has had a controversial “futile care” law that allows treatment to be withdrawn with the patient or family having only 10 days to find another facility willing to provide care. This was challenged in court and was successful in the Baby Tinslee Lewis’ case . Tinslee eventually went home.

Now a new bill H B3162 has passed in the Texas legislature and is headed to the Governor to be signed and Texas Right to Life states that:

HB 3162 modifies several aspects of the Texas Advance Directives Act, including the 10-Day Rule. The bill by Representative Klick offers more protections to patients, such as:

  • Requiring the hospital to perform a procedure necessary to facilitate a transfer before the countdown may begin, 
  • Specifying that the process cannot be imposed on competent patients, 
  • Prohibiting decisions from being based on perceived “quality of life” judgments, and 
  • Giving the family more notice of the ethics committee meeting and more days to secure a transfer.”

Every state should consider having such protections for vulnerable patients and their families.

Is Donation after Circulatory Death a “Game Changer” for Heart Transplant?

In 2002, I wrote a paper titled “Ethical Implications of Non-Heart-Beating Organ Donation” (NHBD) and presented it at Trinity College at a medical ethics conference. At that time, brain death organ donation was well-known, but NHBD was virtually unknown to the public although it comprised about 2% of organ donations at that time.

As I wrote then:

“It is now apparent that the number of organs from people declared brain dead will never be enough to treat all patients who need new organs. ” and “doctors and ethicists have turned to a new source of organs — patients who are not brain dead but who are on ventilators and considered “hopeless”. In these patients, the ventilator is withdrawn and organs are quickly taken when cardiac death (DCD) rather than brain death is pronounced.”

Now, the term “Donation after Circulatory Death” (DCD) is used instead and means:

“Circulatory death occurs when the heart has irreversibly stopped beating and when circulation and oxygenation to the tissues irreversibly stops.” (Emphasis added)

However, with heart transplantation, the heart will be restarted as explained in a March 24, 2023 Medscape article “A ‘Game Changer’ for Heart Transplant: Donation After Circulatory Death Explained”.

In the article, Adam D. DeVore, MD, MHS is interviewed by Ileana L. Piña, MD, MPH and explains how this works and why he is excited:

“Adam D. DeVore, MD, MHS: In the field of heart transplant, DCD or donation after circulatory death is really a game changer. For decades now, we’ve been doing heart transplants from donors who die or have been declared brain dead.

There’s a whole population of potential donors who have very similar neurologic injuries — they’re just not technically declared brain dead — whose organs the family would like to donate. We didn’t have a way before.”

“There are two mechanisms. The family would withdraw care. Somebody affiliated with the hospital would declare that the donor has died. There’s usually a standoff period. That is a little variable, but it’s around 5 minutes.” (All emphasis added)

and added that then:

“…There are then two ways where that heart could be resuscitated or revived, outside the body on the organ care system. Or it could remain in the body through normothermic regional perfusion (NRP), or they’ll go on cardiopulmonary bypass and re-perfuse the heart in the room, and then look at the heart and try to evaluate it before donation. The rest of that donation looks just like every other brain-dead donation.”

…I remember when we were first starting this, I was thinking of how we would explain this to potential recipients and what would this look like. It turns out that something terrible has happened, and families that want to donate organs are relatively enthusiastic and less focused on the details.” (All emphasis added)

ETHICAL CONCERNS

In another March 23, 2023 Medscape article titled “Does New Heart Transplant Method Challenge Definition of Death?, Sue Hughes, a journalist on Medscape Neurology, writes:

“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)

When the NRP technique was first used in the US, these ethical questions were raised by several groups, including the American College of Physicians (ACP).

“The difficulty with this approach, however, is that because the heart has been stopped, it has been deprived of oxygen, potentially causing injury. While DCD has been practiced for several years to retrieve organs such as the kidney, liver, lungs, and pancreas, the heart is more difficult as it is more susceptible to oxygen deprivation. And for the heart to be assessed for transplant suitability, it should ideally be beating, so it has to be reperfused and restarted quickly after death has been declared.” (Emphasis added)

Harry Peled, MD, Providence St Jude Medical Center, Fullerton, California, co-author of a recent Viewpoint on the issue said that:

“There are two ethical problems with NRP, he said. The first is whether by restarting the circulation, the NRP process violates the US definition of death, and retrieval of organs would therefore violate the dead donor rule.

“American law states that death is the irreversible cessation of brain function or of circulatory function. But with NRP, the circulation is artificially restored, so the cessation of circulatory function is not irreversible,” Peled points out.

The second ethical problem with NRP is concern about whether, during the process, there would be any circulation to the brain, and if so, would this be enough to restore some brain function? Before NRP is started, the main arch vessel arteries to the head are clamped to prevent flow to the brain, but there are worries that some blood flow may still be possible through small collateral vessels.” (Emphasis added)

Nader Moazami, MD, professor of cardiovascular surgery, NYU Langone Health, New York City, is one of the more vocal proponents of NRP, stating that:

“”Our position is that death has already been declared based on the lack of circulatory function for over 5 minutes and this has been with the full agreement of the family, knowing that the patient has no chance of a meaningful life. No one is thinking of trying to resuscitate the patient. It has already been established that any future efforts to resuscitate are futile. In this case, we are not resuscitating the patient by restarting the circulation. It is just regional perfusion of the organs.” and “We are arguing that the patient has already been declared dead as they have a circulatory death. You cannot die twice.” (Emphasis added)

CONCLUSION

Ms. Hughes also wrote in her article that:

“Heart transplantation after circulatory death has now become a routine part of the transplant program in many countries, including the United States, Spain, Belgium, the Netherlands, and Austria.”

And in the US, “348 DCD heart transplants were performed in 2022, with numbers expected to reach 700 to 800 this year as more centers come online.” And “It is expected that most countries with heart transplant programs will follow suit and the number of donor hearts will increase by up to 30% worldwide because of DCD. ”

So how important is it to have strict medical ethics standards in organ donations?

In a February 9, 2023 Transplant International article titled “Organ Donation After Euthanasia in Patients Suffering From Psychiatric Disorders: 10-Years of Preliminary Experiences in the Netherlands“, it was reported that:

“Over the ten-year study period 2012–2021 59,546 patients underwent euthanasia of whom 58,912 suffered from a somatic (physical) disorder. The number of patients that underwent euthanasia for an underlying psychiatric disorder was 634 (1.1%). An estimated 10% (5955) of patients who undergo euthanasia in general are medically eligible to donate one or more organs (11).” (Emphasis added)

Organ transplants can be wonderful and lifesaving, but we must know all the facts, be able to trust our healthcare providers, and especially not allow the “slippery slope” of legalized assisted suicide/euthanasia to get any steeper.

Canada and the Euthanasia Endgame

Several nations like Belgium and the Netherlands have had legalized assisted suicide and/or euthanasia, even for minors and for people just “tired of life But now the worst is Canada which legally approved MAiD (medical aid in dying) it in 2016, according to Alex Schadenberg of the Euthanasia Prevention Coalition

Alex Schadenberg quotes Kevin Yuill, a professor who spoke at the Euthanasia Symposium in Brussel in November who said:

“Canada has the dubious honour of being the global capital of euthanasia. Through its medical assistance in dying (MAID) programme, Canada killed more people with lethal injections last year than any other country on Earth – many of them poor, homeless or hopeless. And soon, from March 2023, lethal injections will be offered to anyone who judges their mental-health difficulties to be intolerable.”

Even worse, some people with disabilities are saying that they are being pressured to take a lethal overdose.

In a November 2022 UK article titled “Canadian man alleges hospital is pressuring him to end his life by assisted suicide”, a man with a disease affecting his brain and muscles is suing his Canadian hospital after secretly recording the hospital staff, stating:

“They asked if I want an assisted death. I don’t. I was told that I would be charged $1,800 per day [for hospital care]. I have $2 million worth of bills. Nurses here told me that I should end my life. That shocked me”.

Mr. Foley has applied for “direct funding” from the Canadian government to “employ agency workers of his own choosing and manage his schedule”.

  

The article also cited “a pro-assisted suicide and euthanasia group of doctors in Canada have recently said that doctors have a “professional obligation” to initiate discussion of assisted suicide and euthanasia with patients who might fit the legal criteria. They claim there is nothing in Canadian law which forbids this.”

CANADIAN STATISTICS

The UK article also notes that:

“In 2021, 10,064 people ended their lives by assisted suicide and euthanasia, an increase of over 32% from the previous year, accounting for 3.3% of all deaths in Canada.

According to the latest report on Medical Assistance in Dying from Health Canada, 17.3% of people also cited “isolation or loneliness” as a reason for wanting to die. In 35.7% of cases, patients believed that they were a “burden on family, friends or caregivers”. (Emphasis added)

Canada was set to approve MAiD for people with mental illness but recently, the Canadian government announced its plan to temporarily delay MAiD eligibility  for people whose sole medical condition is mental illness.

CONCLUSION

In 1993, just 3 years after Nancy Cruzan, a woman in a so-called “vegetative state” died a long 12 days after her feeding tube was removed in my home state of Missouri, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, a prominent ethicist and one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

Ominously, he also noted that:

“..increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.)

“(O)ur collective determination as to what lives are worth living” is the very real and frightening potential endgame of legalized euthanasia and it should be stopped now!

How Accurate Is Prenatal Testing?

I have written about the alleged accuracy of prenatal blood testing before as both a nurse and a mother in my blog “A Dark Side of Prenatal Testing” and “Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion”.

Now, ProPublica, a self-described nonprofit investigative newsroom, just published an article titled “They Trusted Their Prenatal Test. They Didn’t Know the Industry Is an Unregulated “Wild West.”

The authors tell the story of a mother who had an in vitro diagnostic test (IDT) that came back negative, meaning her baby did not have the serious conditions that were tested for.

However, when the mom delivered her daughter, the baby had serious problems and only lived 28 hours.

The autopsy showed that the baby had an extra 13th chromosome, a condition that was part of the testing. The chances that the baby would have not have this or two other serious conditions was “greater than 99%.”

The test was a simple blood draw designed to check for an array of genetic anomalies but the mother, a science researcher, read academic articles showing a higher risk of inaccurate results than she realized.

The mom found other women reporting problems with the tests also so she tried contacting the company that made the test, hoping she would help other families.

She was unsuccessful.

She found out that if she had taken other common commercial tests like some for Covid-19 or pregnancy, the company would have had to inform the US Food and Drug Administration about “reports of so-called adverse events.”

The mom found out that the test she took fell into a regulatory void:

“No federal agency checks to make sure these prenatal screenings work the way they claim before they’re sold to health care providers. The FDA doesn’t ensure that marketing claims are backed up by evidence before screenings reach patients. And companies aren’t required to publicly report instances of when the tests get it wrong — sometimes catastrophically.

The broader lab testing industry and its lobbyists have successfully fought for years to keep it this way, cowing regulators into staying on the sidelines.”

The stakes are high for families with the article stating:

 “Upwards of half of all pregnant people (sic) now receive one of these prenatal screenings.”

And that the companies stress that “ultimately, it’s the responsibility of health care providers, who order the tests, to inform patients about the limits of screenings.”

CONCLUSION

When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome.

Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS.

I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy.

After that, I was remarkably worry-free during my last pregnancy and delivered a healthy girl.

But maternity care has changed a lot since 1985, especially since the American College of Obstetricians and Gynecologists (ACOG) now states that Abortion is Healthcare Abortion is Healthcare | ACOG

But despite the possible inaccuracies of prenatal test, there is help if a baby is diagnosed with an unexpected condition like Down Syndrome or Trisomy 13.

Thankfully, there are even programs like Perinatal Hospice & Palliative Care: Continuing Your Pregnancy that can help in the event of a prenatal diagnosis that indicates a baby may die before or after birth.

Where there is love, there is always hope!

New Study Shows Stem Cells and Prenatal Surgery Can Help Babies with Spina Bifida

Spina Bifida is a birth defect that occurs when the spine and spinal cord do not develop completely in an unborn baby. The resulting opening in the spine leaves  the spinal cord and nerves exposed.

That exposure can cause damage leading to paralysis or mobility problems, a buildup of excess fluid on the brain, and infection.

Spina Bifida can sometimes be diagnosed during pregnancy by a blood test, ultrasound or amniocentesis. Sometimes the diagnosis is not made until after birth.

Before the 1990s, treatment for severe spina bifida involved surgery on the baby after birth to close the defect but the procedure could not repair already damaged nerves.

In 1997, the first prenatal surgery was done and in 2011 and 2020, major studies showed that prenatal repair resulted in better outcomes.

But now, in an October 10, 2022 Medscape article Stem Cell Treatment Helps Babies with Spina Bifida”,  a clinical trial at UC Davis Health is showing that a new stem cell treatment-given while the unborn baby is still in the womb-appears to be effective at reversing paralysis and other problems caused by spina bifida in newborns.” (Emphasis added)

But, as the article rightly states,:

“The researchers have expressed caution about drawing full conclusions so far, but the treatment appears promising. They plan to release information about how the babies are doing at developmental milestones throughout the study process.” (Emphasis added)

The clinical trial started in 2021 and involves myelomeningocele, “a severe form of spina bifida where the spinal canal doesn’t fully close before birth, leading to spinal cord damage.”

According to the article, “So far, three babies have received the unique treatment, which is delivered while a fetus is still in the womb.”

DIAGNOSIS AND TREATMENT

Today, prenatal testing is routinely offered to pregnant women, but abortion is too often offered or recommended when prenatal testing shows a possible adverse diagnosis like spina bifida.

According to the Spina Bifida Association, the condition can often be diagnosed before birth:

“There are 3 tests, but, it is important to remember that no medical test is perfect and the results are not always 100 percent accurate. Spina Bifida can be detected in utero by one of the following tests: 

  1. A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.
  2. An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
  3. A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.”

Ironically, one of the big health institutions in my city that provides “Pregnancy termination for women choosing to terminate a pregnancy due to fetal abnormalities or maternal health conditions” also has a Fetal Care Center that uses prenatal surgery not only for spina bifida but also for other conditions such as amniotic band syndrome, twin-to-twin transfusion syndrome, airway/trachea obstruction and blocked urinary tract, etc.!

CONCLUSION

When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome and a severe heart defect.

I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy. I also knew how to find help if any of my children-born or unborn-had a possible health a problem.

Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS (Chorionic villus sampling)

(Today, we have routine non-invasive prenatal screening blood tests called NIPTs but the Federal Food and Drug Administration issued an alert on April 19, 2022 “Genetic Non-Invasive Prenatal Screening Tests May Have False Results: FDA Safety Communication:

“While health care providers widely use NIPS tests, none have yet been authorized, cleared, or approved by the FDA. The accuracy and performance of NIPS tests have not been evaluated by the FDA and these tests can give false results, such as reporting a genetic abnormality when the fetus does not actually have one.” (Emphasis added))

But most importantly, I told them that my daughter Karen was a blessing who helped change many lives for the better during her tragically short life-especially mine.

After Karen died, I became a volunteer babysitter for many children with a range of disabilities and their parents also told me how they became better people because of their child with a disability.

Life must be our highest priority!

What Will It Take?

I recently wrote a blog titled “The War Against Crisis Pregnancy Centers Escalates” about the attacks on crisis pregnancy centers after the Dobbs v. Jackson Women’s Health Organization decision returning abortion law to the individual states was outrageously leaked.

 Now that the final Dobbs v. Jackson Women’s Health Organization decision  is public, the violence against crisis pregnancy centers and churches has continued with few if any arrests.

However, now even pro-life individuals have been targeted.

For example, an 84-year-old pro-life volunteer was shot on Sept. 20 while going door-to-door in her community to talk about a ballot measure concerning abortion in Michigan. Thankfully, she is expected to recover.

Even more disturbing and over the last weekend, was the news that the FBI raided the home of a pro-life advocate Mark Houck and arrested him in front of his 7 crying children for the alleged crime of “Assaulting a Reproductive Health Care Provider”.

According to the National Review, Mrs. Houck “described an incident in which her husband ‘shoved’ a pro-abortion man away from his 12-year-old son after the man entered ‘the son’s personal space’ and refused to stop hurling ‘crude… inappropriate and disgusting’ comments at the Houcks.” The man did not sustain any injuries but did try to sue Houck. The charges were later dismissed.

WHAT WILL IT TAKE TO RESOLVE THE NATIONAL TURMOIL SURROUNDING ABORTION?

I was a young intensive care unit nurse when the Supreme Court’s Roe v. Wade decision came down in 1973. Like most people I knew, I was surprised and shocked when abortion was legalized. However, I quickly found that my medical colleagues were split on the issue, and I was vehemently attacked for being against abortion. I was even asked what I would do if I was raped and pregnant. When I replied that I would not have an abortion and would probably release the baby for adoption, I was ridiculed. Our formerly cohesive unit began to fray.

But I was professionally offended by the pro-life argument that legalizing abortion would lead to the legalization of infanticide and euthanasia.  

It was one thing to deny the truth with an early and unobserved unborn baby, but it was quite another to imagine any doctor or nurse looking at a born human being and killing him or her.

But I was wrong.

As I wrote in my 2019 blog “Roe v. Wade’s Disastrous Impact on Medical Ethics”, personal and professional experiences opened my eyes to the truth.

I have seen the push for “choice” to expand to abortion for any reason up to birth, infanticide and medical discrimination against people with disabilities, including my own daughter who had Down Syndrome.

I wasn’t long until “choice” also became the heart of the “right to die” movement to include to include legalized assisted suicide and euthanasia, withdrawal of feedings from people with serious brain injuries whose “choice” was exercised by family members or doctors and even the voluntary stopping of eating and drinking (called VSED by the pro-death-choice group Compassion and Choices).

With VSED, Compassion & Choices maintains that:

“Many people struggle with the unrelieved suffering of a chronic or incurable and progressive disorder. Others may decide that they are simply “done” after eight or nine decades of a fully lived life. Free will and the ability to choose are cornerstones of maintaining one’s quality of life and dignity in their final days”.  (All emphasis added)

CONCLUSION

I have long preferred the term “respect life” to “anti-abortion” because obviously we should respect the lives of all people at any age or stage of development.

But this doesn’t mean anger or vilification of others.

Over the years I have written, spoken, debated, etc. people who do not agree with the respect life philosophy, but I never became angry.

I also found that listening to and not judging others-especially people in crisis-was crucially important.

For example and many years ago, I ran into an acquaintance I will call Diane and I congratulated her on her obvious pregnancy.

I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

Diane, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Downs, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and ran up to me to apologize for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities. Special Olympics is considered inspirational but Down’s Syndrome is too often seen as a tragedy.

Whether it is abortion or legalized assisted suicide, we must be prepared to help desperate people either personally and/or referring them to a crisis pregnancy center or suicide hotline.

Every life deserves to be respected.

Pain, Choice, and Canada’s now “most permissive euthanasia legislation in the world”

In his excellent July 10, 2022 blog, Alex Schadenberg, chair of the International Euthanasia Prevention Coalition, reveals that now “Canada’s medical assistance in dying (Maid) law is the most permissive euthanasia legislation in the world”.

He says “Canada’s MAiD law currently allows suicide facilitation for persons with disabilities and is on track to expand in March 2023 to those living with mental illness. “ (Emphasis added)

How did assisted suicide/euthanasia laws get so far and so fast down the proverbial “slippery slope”?

In my December, 2016 blog “Pain and ‘Choice’”,  I wrote about how I saw the warning signs when I was a new nurse in 1969.

Here is my blog:

PAIN AND “CHOICE”

December 15, 2016 nancyvalko 

It was 1969 and I was fresh out of nursing school when I was assigned to a patient I will call “Jenny” who was thirty-two years old and imminently dying of cancer. She was curled up in her bed, sobbing in pain and even moaned “just kill me.” The small dose of Demerol I injected into her almost non-existent buttocks every four hours “as needed” was not helping. I reassured Jenny that I was immediately calling the doctor and we would get her more comfortable.

However, I was shocked when the doctor said no to increasing or changing her medication. He said that he didn’t want her to get addicted! I told him exactly what Jenny said and also that she was obviously very close to death so addiction would not be a problem. The doctor repeated his no and hung up on me.

I went to my head nurse and told her what happened, but she told me I had to follow the doctor’s order. Eventually, I went up the chain of command to the assistant director of nursing and finally the Chief of the Medical Staff. The verdict came down and I was threatened with immediate termination if I gave the next dose of Demerol even a few minutes early.

I refused to abandon Jenny so for the next two days before she died, I spent my time after my shift sitting with her for hours until she fell asleep. I gave her whatever food or drink she wanted. I stroked her back, held her hand and told stories and jokes. I asked her about her life. I did everything I could think of to distract her from her pain and make her feel better. It seemed to help, although not enough for me. I cried for Jenny all the way home.

And I was angry. I resolved that I would never watch a patient needlessly suffer like that again.

So, I educated myself by reading everything I could about pain medicine and side effects. I also pestered doctors who were great at pain control to teach me about the management, precautions, and rationale of effective pain management. I used that knowledge to advocate and help manage my patients’ pain as well as educating others.

I was delighted to see pain management become a major priority in healthcare and even called “the fifth vital sign” to be evaluated on every patient. I saw new developments like nerve blocks, new drugs, and regimens to control pain and other techniques evolve as well as other measures to control symptoms like nausea, breathlessness, and anxiety. Now we also have nutritional, psychological, and other support for people with terminal illnesses and their families.

Best of all was that I never again saw another patient suffer like Jenny despite my working in areas such as ICU, oncology (cancer) and hospice.

TWENTY-FOUR YEARS LATER

When my oldest daughter was 14, she attended a public high school where the science teacher unexpectedly started praising the infamous Dr. Jack Kevorkian and his public campaign for legalized assisted suicide and euthanasia.  Kevorkian’s first reported victim was Janet Adkins, a 54 year old woman with Alzheimer’s in no reported physical pain who was hooked up to a  “death machine” in the back of a rusty van. Mrs. Adkins was just the first of as many as 130 Kevorkian victims, many if not most of whom were later found to have no terminal illness. Kevorkian escaped prosecution-even after he harvested a victim’s organs and offered them for transplant-until the TV show 60 Minutes aired Kevorkian’s videotape showing him giving a lethal injection to a man with ALS (Lou Gehrig’s disease). Shockingly, Kevorkian served only 8 years in prison before he was paroled and eventually became a media celebrity peddling assisted suicide and euthanasia.

My daughter, who never before showed any interest in my speaking and writing on the topic of assisted suicide, now stood up and peppered her teacher with facts about Kevorkian. The teacher asked her where she learned her information and she answered, “From my mom who is a cancer nurse”.

Sarcastically, he responded “So your mother wants to watch people suffer?” My daughter responded “No, my mother just refuses to kill her patients!” End of discussion.

CONCLUSION

But not the end of the story. Tragically, we now have legalized assisted suicide in several states and serious efforts  to expand it to include people without physical pain but with conditions like Alzheimer’smental illness or other psychological distress as well as even children.

As Wesley Smith recently and astutely observed:

 “Moreover, the statistics from Oregon and elsewhere show that very few people commit assisted suicide due to physical suffering. Rather, the issues are predominately existential, such as fears of being a burden or losing dignity

The public is being duped by groups like Compassion and Choices that campaign for legalized assisted suicide on the alleged basis of strict criteria for mentally competent, terminally ill adults in unbearable physical pain to freely choose physician-assisted suicide with (unenforceable) “safeguards”.

The emerging situation throughout the world is more like Kevorkian’s dream of unfettered and universal access to medical termination of the lives of “expendable” people. How much easier is that when people with expensive mental health problems, serious illnesses or disabilities can be encouraged to “choose” to be killed?