My 2000 Voices Magazine Article: Who Wants a “Defective” Baby?

This month, it was revealed that President Joe Biden “wants Congress to pass a law making abortions legal up to birth” after the US Supreme Court refused to temporarily block the Texas Heartbeat Law.

While talking to a friend about this, I remembered a 2000 Voices magazine article I wrote about why every unborn child deserves protection and she asked that I send it to her. Sadly, this magazine is no longer publishing.

This is the article I wrote that appears on my other blogsite that contains articles, op-eds, etc. that I wrote up to 2014, when I started this blog. The reflection at the end of this article was published by the National Down Syndrome Association and was-to my surprise-eventually reprinted in several other countries.

Voices Online Edition
Summer 2000
Volume XV, No. 2 – Jubilee Year

Who Wants a “Defective” Baby?

by Nancy Valko, R.N.

“Of course, no one wants to adopt a defective baby. ” This was said with much emotion (and not much charm) by an older gentleman in a class at a local university where I was speaking this past April. I had been invited to discuss the legalities and effects of Roe v. Wade from a pro-life point of view to a class of senior citizens studying the Constitution and the Supreme Court.

While several of these senior citizen students defended abortion as a matter of complete privacy for the mother, their arguments centered around the “need” for legalized abortion as a solution for social problems.

Since I had told the story of my daughter Karen, born in 1982 with Down Syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a “defective” baby.

“Happily, sir,” I told the senior student, “You are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down Syndrome. Just the night before, I added, I had found a new website for matching prospective parents with children who had chromosomal and physical defects.”

The student refused to believe that this could be true.

The effects of Roe v. Wade
Life of the mother, incest, rape and fetal defect are the four hard cases usually cited to justify what has now become abortion on demand. All of these are uncommon reasons given in the estimated 1.3 million abortions every year; but the possibility of having a child with a birth defect is a common fear nearly all expectant mothers experience and, not surprisingly, polls show that the majority of the public support abortion in this circumstance.

Although I have always been pro-life, I could understand the fear underlying these poll results — until my own daughter was born.

Just two weeks before the birth of my daughter Karen, I saw a mother trying to pry her young son with Down Syndrome away from a display case at the supermarket. She looked exhausted.

“Please, Lord,” I silently prayed, “Let this baby be ok. I can handle anything but Downs.”

When Karen was born with Down Syndrome, I was stunned. But I was quickly put in touch with mothers from the Down Syndrome Association who replaced my fears with information and realistic hope.

Then a doctor told me the truly bad news. Karen had a heart defect, one so severe that it seemed inoperable and she was not expected to live more than 2 months. That certainly put things in the proper perspective.

What “pro-choice” really means
It turned out later that Karen’s heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery, but I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success — if my child didn’t also have Down Syndrome. Apparently, even though Karen was now a legal person according to Roe v. Wade by the fact of her birth, this non-treatment option could act as a kind of 4th trimester abortion.

It was then that I realized what pro-choice really meant: Choice says it doesn’t really matter if a particular child lives or dies. Choice says the only thing that really matters is how I feel about this child and my circumstances. I may be “Woman Hear Me Roar” in other areas according to the militant feminists, but I was not necessarily strong enough for a child like this.

I also finally figured out that Roe v. Wade’s effects went far beyond the proverbial desperate woman determined to end her pregnancy either legally or illegally. The abortion mentality had so corrupted society that it even endangered children like my Karen after birth. Too many people, like the student in Supreme Court class, unfortunately viewed Karen as a tragedy to be prevented.

Medical progress or search and destroy?
In the late 1950s, a picture of the unborn baby using sound waves became the first technique developed to provide a window to the womb. Ultrasound in recent years has been used to save countless lives by showing women that they were carrying a living human being rather than the clump of cells often referred to in abortion clinics.

But while expectant parents now routinely and proudly show ultrasound pictures of their developing baby, there is a darker side to prenatal testing. Besides ultrasound, which can show some birth defects, blood tests like AFP testing and the Triple Screen to test for neural tube defects or Down Syndrome are now becoming a routine part of prenatal care. Amniocentesis and chorionic villus sampling are also widely available tests to detect problems in the developing baby. It seems that every year, new testing techniques are tried and older ones refined in the quest to find birth defects prenatally.

97% of the time, women receive the good news that their baby seems fine; but the tests are not foolproof, and they can only test for hundreds of the thousands of known birth defects. Relatively few such birth defects can be treated in the womb at the present time. Some women want testing so that they can prepare for a child who has a birth defect, but when the tests do show a possible problem like Down Syndrome, up to 90% of women will abort.

While some hail prenatal testing as a way to prevent birth defects, the effects of such testing has led to what author Barbara Katz Rothman calls the “tentative pregnancy” in her 1993 book of the same name. Although Rothman calls herself pro-choice, her studies of women considering amniocentesis led to her conclude that such testing has changed the normal maternal-child bonding in pregnancy and the experience of motherhood, usually for the worse.

“I might not be pregnant”
I observed this firsthand several years ago when I ran into an acquaintance and 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 apologized 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.

On one hand, people are inspired by the stories of people who have disabilities and support organizations like the Special Olympics; but, on the other hand, many people consider it almost irresponsible to bring a child with disabilities into the world to suffer when prenatal testing and abortion are so available.

But as the vast majority of parents who are either natural or adoptive parents of children with disabilities will attest, all children are born with both special gifts and special limitations. No child should be denied birth because of a disability or even a limited life expectancy.

Women who do abort after a diagnosis of a birth defect are also hurt. Besides depriving themselves of the special joys — which occur along with the difficulties — of loving and caring for such a child, these women often experience unresolved grief, guilt and second-guessing instead of the relief and peace they expect.

A few years ago, a local hospital which performs late-term abortions for birth defects asked a miscarriage and stillbirth counseling group to help with their distressed patients. The group declined, citing the fact that the most reassuring message they give grieving mothers is that there is nothing they did or didn’t do that caused the death of their babies. Obviously, that was not a statement they could make to mothers who abort. There is a very real difference between losing and terminating a child.

How many of these mothers knew before their abortions that, in practical terms, there has never been a better array of services and support for children with disabilities and their parents? Or that their children were dearly wanted by prospective adoptive parents? Such information might have been just the support they needed to choose life for their children.

Final thoughts
Despite the best medical care, my Karen died at the age of 5 and 1/2 months, but the impact of her life has lived on. At her funeral Mass, the priest talked about how this child who never walked or talked had transformed the lives of those who met her.

Especially mine.

After Karen died, I sat down and tried to put into words what Karen and all children with disabilities have to teach the rest of us. The following reflection was published in the National Down Syndrome Association newsletter in May, 1984.

THINGS NO TEACHER EVER TAUGHT
In 1982 my daughter, Karen, was born with Down Syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen may have been retarded but she taught me things no teacher ever did.

Karen taught me:

That life isn’t fair — to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down Syndrome is an inadequate description of a person. That I am not “perfect” either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.

That I needed to worry less and celebrate more.


Sources:

1. “Prenatal Testing”, by Nancy Valko, R.N. and T. Murphy Goodwin, M.D., pamphlet, Easton Publishing Co.

2. “Doctors have prenatal test for 450 genetic diseases” by Kim Painter. USA Today, 8/15/97

3. Rothman, Barbara Katz. The Tentative Pregnancy. Revised, 1993. WW Norton and Co.

4. “Advances, and Angst, in a New Era of Ultrasound”, by Randi Hutter Epstein. New York Times. May 9, 2000.

Nancy Valko, R.N., a contributing editor for Voices, is a former president of Missouri Nurses for Life who has practiced in St. Louis for more than thirty years. An expert on life issues, Mrs. Valko writes a regular column on the subject for Voices.


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An Unexpected Recovery and What We Can Learn from It

When 28 year old Jacob Haendel was rushed to an emergency room in Massachusetts four years ago, the doctors thought he was having a stroke but brain scans showed something very different. Instead, his brain scans showed that his “brain seemed to be unplugging itself from the rest of his body”. One doctor described it as “The wires weren’t sending signals from place to place.”

The doctors were unsure what was going on until Jacob revealed that he had been doing drugs, mostly opioids, until he turned to street heroin. The medical team thought he might have ingested a toxin which led to their diagnosis of a very rare condition called: Toxic Acute Progressive Leukoencephalopathy. Only a few dozen people had ever been diagnosed with this.

Six months later, Jacob deteriorated to what the doctors thought was a “vegetative state” and completely unaware of himself or his surroundings. He was sent to an extended care facility on a ventilator to breathe and a feeding tube. Eventually, he was put in hospice and by Christmas, his family told that he probably would die in a couple of days. Jacob’s father whispered to him that it was “ok to let go”.

But Jacob didn’t die and slowly his brain started to sputter back to life.

The first sign was a small twitch in his wrist. Some thought this meant nothing but his family thought otherwise.

A few weeks later, everyone was stunned when Jacob started moving his tongue and his eyes, “almost imperceptibly at first, but enough to use a letterboard to spell out a message he’d been desperately trying to send for almost a year. His message was I can hear you. (Emphasis added)

As Jacob began communicating, the doctors realized that he had not been unconscious but rather awake the whole time. Jacob remembered nurses calling him “brain dead” and that visits slowed over time.

In a July 25, 2021 CBS Sunday Morning tv segment, Jacob told CBS correspondent Lee Cowan that “I couldn’t express anything to anyone. No one knew what was going on in my head, and I just wanted someone to know, like, that I was in there.”

He also said that he talked to himself a lot and felt pain. Jacob also revealed that “he would do math problems in his head just to help keep himself from the guilt that his drug use has caused all of this.”

Jacob’s mother had died of breast cancer and Jacob said he started using drugs to cope.

Jacob’s road to rehabilitation has been long and still ongoing. However, Jacob has “come back with such a profound understanding of what a second chance really means. “I am an improved Jake,” he said. “And I’m a happier Jake. I don’t want to give up.”

Although Jacob still has limitations of speech and movement, he now was a website and writes updates.

WHAT WE CAN LEARN FROM JACOB’S STORY

Over my years in mostly critical care nursing, I spoke to all my patients patients-regardless of a diagnosis of coma, “vegetative state”, etc.-as if they were totally awake and explained everything I was doing as well as the time and date, visitors who came, etc.

I also closely watched for any sign of voluntary movement or reaction. Like Jacob, even almost imperceptible movement could be a sign of awareness and I encouraged my patients to repeat the movement.

I was often teased and asked if I spoke to my refrigerator too but the teasing stopped when some of these patients started to respond or even recovered. Some of them later related what they heard and/or felt when they were assumed to be unaware. My point was that speaking empathetically to all our patients was a matter of respect that could even help them get better.

Hopefully, Jacob’s story will be an encouragement for all healthcare providers as well as people with severe brain injuries and their families.

CONCLUSION

But Jacob has another big message for every one of us in our daily lives: simplicity.

In Jacob’s own words:

“My life was never a walk in the park, but I never truly appreciated how important the simplicities of life are until I began my journey to recovery. My reasoning for this word is multi-focal just like my case. The only word that can accurately describe my case is “complex” and I am un-ironically striving for just the opposite; simple. After surviving and overcoming locked in syndrome, all I want are the simplicities in life; things like talking, connecting with friends and family, enjoying solid foods, breathing on my own, going outside instead of being locked in a hospital, being able to feed myself and even taking a walk in the park. All of these simple things I took for granted are now goals I am working towards being able to enjoy again”

Especially at a time of such discord in our society now, we all need to remember and celebrate the so-called “little things” that make us grateful for our own precious lives.

The “Population Bomb” Fizzles, but Now There is a Birth Dearth with Grave Consequences in Many Countries

 Dr. Paul R. Ehrlich was an entomologist (a scientist who specializes in the study of insects)  at Stanford University when he published his bestseller “The Population Bomb” in 1968.  Although initially ignored, it incited a worldwide fear of overpopulation and ultimately became one of the most influential books of the 20th century.

In his book, Ehrlich predicted that unless population decreased, “hundreds of millions of people are going to starve to death” in the 1970s.

That did not happen but 50 years later in a 2018 interview with Smithsonian magazine writer Charles C. Mann, Paul Ehrlich claimed that the book’s main contribution was to make population control “acceptable” as “a topic to debate.”

However, as Mr. Mann wrote:

” But the book did far more than that. It gave a huge jolt to the nascent environmental movement and fueled an anti-population-growth crusade that led to human rights abuses around the world.” (Emphasis added)

But even 50 years later and with the population declining in many countries, Paul Ehrlich continued to insist that:

“Population will fall, either when people choose to dramatically reduce birthrates or when there is a massive die-off because ecosystems can no longer support us. (Emphasis added)

THE HARSH REALITY TODAY

In 1980, China began a strict one child per married couple policy that even included forced abortions for women who did not comply.

In 2015, China raised the limit to two children, citing a “rapidly aging society and a shrinking working-age population”.

China has now increased the number of children to 3 children but as a June 3, 2021 Wall Street Journal article states “China Delivers Three-Child Policy, but It’s Too Late for Many.

Even with years of declining birthrates, there are fewer young people willing to buck the trend of postponing or forgoing marriage and children.

The result is an aging population with a shortage of children. In one Chinese province almost 40% of the province’s population of 880,000 are 60 or older and there is a surging demand for nursing homes. The local government is looking for private investors to help some 7,000 elderly residents who cannot take care of themselves.

Even beyond China, a May 22, 2021  New York Times article titled Long Slide Looms for World Population, With Sweeping Ramifications recognized that:

“All over the world, countries are confronting population stagnation and a fertility bust, a dizzying reversal unmatched in recorded history that will make first-birthday parties a rarer sight than funerals, and empty homes a common eyesore.” (Emphasis added)

HUNGARY FIGHTS BACK

A replacement rate of about 2.1 is necessary to sustain a population but the population in Hungary had been declining since 1981. It reached an all-time low of 1.23 in 2011.

Katalin Novák, the Minister for Family Affairs in Hungary, has facilitated a family-friendly approach that has seen birth rates start to rise. The birth rate is now up to 1.56, still low but improving.

As Minister Novak states:

“The government’s measures of the past ten years have evidently moved demographics in the right direction. The number of childbirths, abortions, the infant mortality rate, marriages, and divorces have all moved in a favorable direction. This also proves that we have made the right decision when we made family-centered governance a priority and are now on the right path. Families are enjoying government support, and we are helping our youth by giving them the opportunity to start a family whenever they want.” (Emphasis added)

THE SITUATION IN THE UNITED STATES

As of 2019 (the latest year for which data is available), the U.S has the lowest fertility rate on record and the lowest number of births in 35 years.

As the New York Times noted in its article about population decline:

“The change may take decades, but once it starts, decline (just like growth) spirals exponentially. With fewer births, fewer girls grow up to have children, and if they have smaller families than their parents did — which is happening in dozens of countries — the drop starts to look like a rock thrown off a cliff. (Emphasis added)

CONCLUSION

The “population bomb” theory has had unintended and disastrous consequences, even in the U.S. and despite immigration.

In 2018, a US Census Bureau article predicted “The Greying of America: More Older Adults than Kids by 2035 for the first time in US history-joining other countries with large aging populations.

As the US Census Bureau states:

“With this swelling number of older adults, the country could see greater demands for healthcare, in-home caregiving and assisted living facilities. It could also affect Social Security. We project three-and-a-half working-age adults for every older person eligible for Social Security in 2020. By 2060, that number is expected to fall to two-and-a-half working-age adults for every older person.” (Emphasis added)

A country with more older people than children can unbalance a society socially, culturally and economically.

Even worse, legalizing abortion and assisted suicide/euthanasia will only make the situation more dire the US.

Since the US Supreme Court legalized abortion in 1973 with the Roe v. Wade decision,  more than 62,000,000 abortions have been performed and now the new Biden administration wants to roll back restrictions on abortion  and make abortions taxpayer-funded

And as efforts by groups like Compassion and Choices to legalize assisted suicide throughout the US has now spread to 9 states and the District of Columbia despite pro-life and disability rights opposition, we should not be surprised if there is another US Supreme court case in the future like the 1997 Vacco v Quill Supreme Court case  that attempted to establish physician-assisted suicide as a fundamental right for the terminally ill like the Roe v. Wade abortion decision legalizing abortion for (initially) just women in the first three months of pregnancy. 

Instead of threats to human beings at the beginning and end of life, we should be welcoming new lives and families as well as caring for the elderly, disabled and poor to improve and stabilize ourselves and our country.

Caring for an Elderly Relative who Wants to Die

I was disturbed but not really surprised when I read the October 21, 2020 New England Journal of Medicine article by Scott D. Halpern, M.D, Ph.D., titled “Learning about End-of-Life Care from Grandpa”.

Dr. Halpern, a palliative care doctor and ethicist at the University of Pennsylvania, wrote about his elderly grandfather who had been widowed for the third time and wrote “My life was over too, only existence remained,” in a memoir for his family.

As Dr. Halpern writes, “It was downhill from there” as his grandfather coped with challenges like blindness, deafness and arthritis.

Family members offered to care for him but the grandfather chose to go into an assisted living facility where family members could visit him frequently. But then, Covid 19 visitations cut him off entirely from the outside world.

Eventually, the grandfather was allowed to see relatives one at a time outdoors at the facility.

Nearing his 103rd birthday, the grandfather started asking Dr. Halpern about “any plausible option to hasten death”.

New Jersey had recently approved physician-assisted suicide, but Dr. Halpern was “ambivalent” about that option. In addition, his grandfather did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness”.

Alarmingly, Dr. Halpern found that the medical code for this diagnosis called “adult failure to thrive” was being used not only used to access hospice but also to access physician-assisted suicide in some states.

Unable to find a New Jersey doctor willing to use physician-assisted suicide on his grandfather anyway, Dr. Halpern offered his grandfather the option of VSED (voluntarily stopping of eating and drinking) to hasten or cause death that the pro-assisted suicide group Compassion and Choices touts as “natural” and legal in all states.

THE TRUTH ABOUT VSED

Dr. Halpern wrote that his grandfather had trouble refusing food and water on his own. He started and stopped the process a few times.

Dr. Halpern was not surprised, writing that:

“ For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.” (Emphasis added)

Finally, Dr. Halpern’ write that his grandfather said “I just want it over with. Scott, do whatever you need to do.”

Dr. Halpern writes that he consulted his hospice team and began treating his grandfather’s thirst “as I treat other forms of discomfort — with morphine and lorazepam” (Emphasis added)

Even then, it took 12 long days for his grandfather to finally die.

The lessons that Dr. Halpern says he finally learned were that:

“despite many problems with physician-assisted dying, it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

And

stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)

CONCLUSION

Dr. Halpern obviously loved his grandfather and tried to meet his grandfather’s emotional and physical needs before telling him about the VSED option and eventually adding terminal sedation. And it seems that the imposed isolation because of potential Covid 19 infection was especially devastating for his grandfather.

But his justification for physician-assisted suicide as “the most holistic relief possible for people who are not immediately dying, but rather are done living” is chilling.

Unfortunately, that is an attitude seen all to often in medical professionals that has led to the expansion of some assisted suicide laws from terminal illness to non-terminal conditions like “completed life” and disabilities.

Both personally and professionally as a nurse, I know how difficult it can be on families when caring for a family member-especially an older relative-who says he or she wants to die.

But I also know that while we all can have sympathy for someone who says they want to die, the word “no” can be a powerful and loving response. The real answer is to help make living as good and meaningful as possible until death.

For example, I became the only caregiver when my elderly aunt developed diabetes and late-stage pancreatic cancer in 2000.

I went to doctor visits with her and went over the options with her. My aunt rejected chemo and radiation that had only a small chance of even slowing the cancer. She also refused hospice.

I offered to care for her in my home with my 15 year old daughter who also wanted to help. However my aunt felt it would cramp my daughter’s lifestyle so she decided to stay in her own home until she died.

So I helped her at home and purchased my first cell phone so that she could contact me at anytime. At that time, I was a single parent and worked full time nights in an ICU.

However, one day my aunt asked me about stopping her insulin to die faster. I told her how that could put her at risk for a heart attack or stroke from high blood sugar with no one there to help.

So she changed her mind and then even began opening up about her condition with others. She was stunned when people told her how inspiring she was and offered to help her in any way.

My aunt became happier than I had ever seen her.

Eventually, my aunt did accept hospice care at a facility she knew. I visited and called often. My aunt was physically comfortable and alert.

One day when my daughter and I went to visit her, we found that she had just died quietly in her sleep. The nurses had just stepped out to call me.

My daughter later wrote a beautiful essay about her first experience with death for her high school and received an A+. Her essay was later published on a nursing website.

In the end, causing or hastening death does not really solve anything but rather can be seen as an abandonment of the suffering person and a destroyer of the necessary trust we all must have in the ethics of our healthcare system.

We must never discriminate when it comes to helping anyone contemplating suicide.

.

Surprising New Test for Predicting Recovery after Coma

An April 29, 2020 Nature Journal article titled “Olfactory sniffing signals consciousness in unresponsive patients with brain injuries” found that nasal response to odors (sniffing) by 43 severely brain-injured patients predicted the likelihood of recovery and long-term survival.

According to Noam Sobel, PhD, of the Weizmann Institute of Science in Rehovot, Israel, one of the authors of the article and speaking to MedpageToday:

“If you sniff at an odorant, then it’s 100% you will regain consciousness to at least a minimal level, and you will likely live for years,” he told MedPage Today. “If you don’t sniff at an odorant, that is a bad sign, but not all hope is lost.” (Emphasis added)

Amazingly, he said that 37.5% of the unresponsive patients who didn’t sniff did eventually regain consciousness.

Dr. Giacino, PhD of Harvard Medical School who helped write the 2018 American Academy of Neurology guidance on disorders of consciousness told Medpage that this study is “a cleverly and carefully designed study that adds another much-needed tool to the consciousness-detection toolbox” even though “Between 30% and 60% of patients who sustain severe TBI (traumatic brain injury) have diminished or complete loss of smell due to the mechanics of the injury.”)

He also noted that, based on available evidence, about four in 10 patients who are deemed unconscious on bedside examination actually retain conscious awareness and that “A significant portion of these patients have covert consciousness — preserved cognitive function that cannot be expressed through speech or movement.” (Emphasis added)

WHY IS THIS STUDY SO IMPORTANT?

As Dr. Giacino said in the Medpage article:

“Published evidence from Canada in a large cohort of ICU patients with traumatic brain injury [TBI] found that approximately 70% of the deaths were due to withdrawal of treatment and in about 60% of cases, the decision to stop treatment was made within 72 hours,” he said. “It’s possible that a positive sniff test might delay this decision, which is important since we know that about 20% of TBI patients who survive what appears to be catastrophic injury recover to a functionally-independent level by 5 years post-injury.” (Emphasis added)

As we have seen over the past decades, whether or not a severely brain-injured person is or can become conscious has become a life and death matter. We have seen this in the cases of Nancy Cruzan, Terri Schiavo and Zach Dunlap even though, as I wrote in my August 18, 2018 blog, “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover”.

THIS ISSUE HAS BEEN CLOSE TO MY HEART FOR DECADES.

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”“Katieand “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.

CONCLUSION

But I never even thought to give any of my patients a sniff test. What a simple test for medical professionals to do!

And even though this study is small and needs to be replicated and validated, I believe it is further evidence that we need to reevaluate our current medical ethics and laws that allow life-sustaining treatment to be withdrawn from people with severe brain injuries on the premise that such brain-injured people have no “quality of life” and that such injuries are routinely hopeless.

And I hope that the sniff test can become a standard part of all medical evaluations of people with severe brain injuries.

Health Care Rationing, Covid 19 and the Medical Ethics Response

While the key medical model in the US for Covid 19 deaths has just again been revised from 240,000 to 100,000 to now just 60,000 by August along with concerns about the possible overuse of ventilators in Covid 19, there is still a push for medical health care rationing guidelines.

As the April 8, 2020 Wall Street Journal article As Coronavirus Peaks, New York City’s Hospitals Prepare ‘Live or Die’ Guidance” notes, some hospitals and health care systems are coming up with guidelines and scoring systems to allocate ventilators. At the same time, New York lawmakers have recently passed a measure to protect hospitals and clinicians from certain medical malpractice lawsuits while the Covid 19 virus strains the health system.

Disability groups are complaining about discrimination in health care rationing plans that would “illegally deprive people based on age, mental cognition or disability”. In addition, a recent Center for Public Integrity analysis shows that policies in 25 states would ration care in ways disability advocates have denounced.

While such rationing plans are usually said to be based on determining which patients have little if any chance of a good outcome, i.e.  medical futility, even the American Medical Association has admitted in its Code of Ethics that “However, physicians must remember that it is not possible to offer a single, universal definition of futility. The meaning of the term “futile” depends on the values and goals of a particular patient in specific clinical circumstances.” (Emphasis added)

THE CATHOLIC MEDICAL ETHICS PERSPECTIVE

Medical ethics in Catholic health care institutions are often considered the most stringent in terms of protecting human life from conception to natural death. So what do Catholic ethics authorities say about rationing?

On April 3, 2020, the US Catholic Conference of Bishops (USCCB) issued a powerful statement “Bishop Chairmen Issue Statement on Rationing Protocols by Health Care Professionals in Response to Covid-19” that stated:

“Every crisis produces fear, and the COVID-19 pandemic is no exception. However, this is not a time to sideline our ethical and moral principles. It is a time to uphold them ever more strongly, for they will critically assist us in steering through these trying times.”

and

“Good and just stewardship of resources cannot include ignoring those on the periphery of society, but must serve the common good of all, without categorically excluding people based on ability, financial resources, age, immigration status, or race.” (Emphasis added)

The statement cited other Catholic health care groups like Catholic Medical Association, the National Association of Catholic Nurses and the National Catholic Bioethics Center that all issued helpful statements.

However another Catholic group mentioned, the Catholic Health Association, has also issued a problematic statement on the rationing issue titled “Code Status and COVID-19 Patients “ stating that:

“CPR may be medically inappropriate in a significant portion of elderly, critically ill patients with COVID-19 and underlying comorbidities. As per Parts 3 and 5 of the Ethical and Religious Directives for Catholic Health Care Services, if it is shown that the burdens exceed the benefits, it is morally acceptable to withhold such procedure.” (Emphasis added)

And even worse:

“If treating clinicians, including more than one physician, determine that CPR is not medically appropriate, a Do Not Attempt Resuscitation Order (DNR) may be written without explicit patient or family consent.” (All emphasis added)

In a separate April 7, 2020 statement from the  National Catholic Partnership on Disability titled “Rights of Persons with Disabilities to Medical Treatment During the COVID-19 Pandemic , the NCPD states “As The Office of Civil Rights of the U.S. Department of Health and Human Services has recently reminded us, America’s basic civil rights laws, including the Americans with Disabilities Act, prohibit discrimination:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. ”  (Emphasis added)

CONCLUSION

Over my many decades as a nurse, I have seen the question of “quality of life” deteriorate from what can we do to improve the quality of life for every patient to judging whether or not a patient has sufficient quality of life to justify treatment or care like a feeding tube.

During that time, Alzheimer’s and major CVAs (strokes) in advanced age have come to be seen as fates worse than death that should not be a burden on people and their families or a waste of health care resources.

Before my own mother developed Alzheimer’s and a terminal cancer, she often told me that she never wanted to be a “burden to her family”. I never considered her a “burden” when I cared for her and she was comfortable and fed to her last day. I will never tell my children what my mother told me.

And especially with assisted suicide polls showing much public support, we cannot afford to play into the idea that some people are “better off dead” regardless of whether or not they “choose” a premature death or someone else “chooses” it for them.

We should also remember the lethal legacy of the 2005 Hurricane Katrina disaster. Flooding caused the New Orleans mayor to issue an unprecedented mandatory evacuation of the city with the exception of major hospitals. But when conditions worsened at the large Memorial Medical Center and evacuation efforts were slow, some medical staff allegedly euthanized some of the patients.

However and despite strong evidence, a massive PR campaign portraying those patient deaths as “compassionate” resulted in the 2007 grand jury refusing to indict the doctor and 2 nurses charged.

As we see this debate over medical ethics in crisis situations continue today, we must continue to insist that every person deserves a natural lifespan without discrimination.

Ventilator Rationing, Universal DNRs and Covid 19 (Coronavirus)

As a nurse myself, it is hard to watch my fellow nurses bravely fighting on the front lines of this pandemic without being able to be there with them.

Nurses are a special breed. In my over 50 years as a nurse, I found that most of us chose nursing because we want to help people and alleviate suffering. We work the long hours on our feet, skip meals, hold hands and listen, cry when our patients die, etc. because we truly do care.

But the health care system has been changing. A dark new ethics movement is infecting our system and telling us not only that our patients have a right to choose to end their lives but also that some of our patients even “need” to die and that we can’t care for all of them during the Covid 19 pandemic.

Worst of all, we are being told that we can now know how to decide which patients are “expendable”.

VENTILATOR RATIONING

A 71 year old man with a heart condition arrives at a hospital is diagnosed with Covid 19. His condition worsens and he is placed on a ventilator to help him breathe. Then the infection rate spikes in the city and the hospital is overrun with severely ill patients, many between 20 and 50 years old and otherwise healthy.

The health care team is forced to decide which patients should they focus on and care for.

This is the scenario posed in a March 20, 2020 Medpage article “Ethics Consult: Take Elderly COVID-19 Patient Off Ventilator?— You make the call” along with an online survey with 3 questions:

1. Would you prioritize the care of healthier and younger patients and shift the ventilator from the elderly man to patients with a higher probability of recovering?
2. Would you change your decision if the elderly patient had been in intensive care for a non-COVID-19-related illness?
3. Would you prioritize the older man over college students who had likely been
infected during spring break trips?

After almost 4000 votes, the survey showed 55.65% voting yes on prioritizing the care of the healthier and younger patients, 78.11% voting no on changing their decision about the elderly patient if he didn’t have Covid 19 and 71.12% voting no on prioritizing the elderly man over college students likely to have been infected on a spring break trip.

So while most people fear becoming infected with Covid 19, less well-known ethical dangers may also affect us-especially those of us who are older or debilitated.

Every day, we hear about the shortage of ventilators needed for Covid 19 patients and the overworked and understaffed health care professionals providing the care. Now both mainstream media and medical journals are publishing articles about the ethical dilemma of denying CPR (cardiopulmonary resuscitation) or a ventilator to older patients or those with a poor prognosis with Covid 19 in a triage situation.

Triage is defined as “A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated.” (Emphasis added)

But this definition does NOT include deciding how to triage people based on age or “productivity”.

UNIVERSAL DNRs

A March 25, 2020 Washington Post article “A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic” posed the question: “how to weigh the ‘save at all costs’ approach to resuscitating a dying patient against the real danger of exposing doctors and nurses to the contagion of coronavirus.”

This is not just an academic discussion.

As the article reveals, “Northwestern Memorial Hospital in Chicago has been discussing a do-not-resuscitate policy for infected patients, regardless of the wishes of the patient or their family members — a wrenching decision to prioritize the lives of the many over the one.” (Emphasis added) And Lewis Kaplan, president of the Society of Critical Care Medicine and a University of Pennsylvania surgeon, described how colleagues at different institutions are sharing draft policies to address their changed reality.

Bioethicist Scott Halpern at the University of Pennsylvania is cited as the author of one widely circulated model guideline being considered by many hospitals. In an interview, he said a universal DNR for Covid 19 patients was too “draconian” and could sacrifice a young person in otherwise good health. He also noted that the reality of health-care workers with limited protective equipment cannot be ignored. “If we risk their well-being in service of one patient, we detract from the care of future patients, which is unfair,” he said.

The article notes that “Halpern’s document calls for two physicians, the one directly taking care of a patient and one who is not, to sign off on do-not-resuscitate orders. They must document the reason for the decision, and the family must be informed but does not have to agree.” (Emphasis added)

This could not only upend traditional ethics but also the law as “Health-care providers are bound by oath — and in some states, by law — to do everything they can within the bounds of modern technology to save a patient’s life, absent an order, such as a DNR, to do otherwise.”

Both disability and pro-life groups have condemned such health care rationing with Covid 19, especially for older people and people with disabilities.

However, this and more is apparently already happening.

In an April 1, 2020 Wall Street Journal article “What the Nurses See: Bronx Hospital Reels as Coronavirus Swamps New York” a co-worker told the nurse interviewed that the nurses were no longer doing chest compressions to resuscitate Covid 19 patients because “it uses lots of protective gear and puts workers at greater risk than chemical resuscitations”. This was corroborated by other nurses who said this has become an “unspoken rule.”

CONCLUSION

How can we protect ourselves and our loved ones in these circumstances?

At the very least and whether or not we are older or have disabilities, we should consider or reconsider our advance directives.

As the Life Legal Defence Foundation  writes in their “SPECIAL MESSAGE ABOUT COVID-19 AND ADVANCE HEALTH CARE DIRECTIVES”:

As COVID-19 spreads around the globe, the public is learning about the importance of mechanical ventilators in providing temporary breathing support for many of those infected. Ventilators are saving lives!

A false understanding of respirators and ventilators has become commonplace in recent years. Many people think that these and similar machines’ only role is prolonging the dying process. The widely publicized treatment of COVID-19 patients is helping to dispel that myth. Many patients rely on machines temporarily every day for any number of reasons and go on to make full recoveries.

Unfortunately, many individuals have completed advance health care directives stating or suggesting that they do not wish to receive breathing assistance through mechanical ventilation.

Please take the time to review any advanced medical directives (including POLST forms) signed by you or your loved ones to make sure they are clear that mechanical ventilation is not among the forms of care that are refused. If there is any ambiguity, you may want to consider writing, signing, and dating an addendum specifying that mechanical ventilation is authorized. (Emphasis in original)

I would add that other treatments or care such as DNRs and feeding tubes also not be automatically checked off. I believe it is safer to appoint a trusted person to insist on being given all information concerning risks and benefit before permission is given to withdraw or withhold treatment.

Even as the nation is racing to get more ventilators and staff as we cope with this terrible pandemic, we all must continue to affirm the value of EVERY human life.

 

Roe v Wade 47 Years Later

Like everyone else I knew, no one expected the US Supreme Court’s case Roe v Wade to legalize abortion in 1973. I was shocked when the Court legalized abortion with virtually no restrictions during the first trimester stating:

“(a) For the stage prior to approximately the end of the first trimester, the abortion decision and its effectuation must be left to the medical judgment of the pregnant woman’s attending physician. Pp. 163, 164.
(b) For the stage subsequent to approximately the end of the first trimester, the State, in promoting its interest in the health of the mother, may, if it chooses, regulate the abortion procedure in ways that are reasonably related to maternal health. Pp. 163, 164.” (Emphasis added)

It wasn’t until much later that I learned about the Doe v Bolton case (decided at the same time as Roe) that expanded the definition of “health”, stating that the “medical judgment (for abortion) may be exercised in the light of all factors–physical, emotional, psychological, familial, and the woman’s age–relevant to the well-being of the patient. All these factors may relate to health.” (Emphasis added)

That redefinition of a woman’s health opened the expansion of abortion.

Unfortunately, those of us who expressed horror about these decisions were quickly derided by those who supported legalized abortion. Even those of us who were medical professionals and knew better felt intimidated.

MY PERSONAL EXPERIENCE WITH ABORTION AND ITS EFFECTS

When I became a mother a few years after the Roe v Wade decision and read the prenatal development pamphlet given to expectant mothers, my heart ached for those mothers who chose abortion without such crucial information.

Eventually, I had a daughter born with Down Syndrome and a severe heart defect as well as another daughter who became pregnant at 18. I could understand the fear and desperation underlying an abortion decision and I was determined to help in some way by joining the pro-life movement.

Because of the pro-life movement, I have been better able to help desperate mothers, children with disabilities and their families as well as other people in danger of being seen as “inconvenient”, “unwanted” or “better off dead”.

THE ABORTION TRAJECTORY AND HOW IT IS CHANGING

After the Roe decision, it didn’t take long before “abortion rights” to begin expanding and now we have at least 8 states legislating abortion on demand throughout pregnancy  as well as at least 19 states allowing abortionists to leave babies to die who survive abortion.

Most recently, pro-abortion Democrats have blocked efforts to get Congress to vote on the “Born-Alive Abortion Survivors Protection Act” and in my home state of Missouri, the last Planned Parenthood clinic is still fighting closure over its health violations.

But despite all this activity on the pro-abortion side, many states have enacted strong protections for mothers and their unborn babies. Even the pro-abortion Guttmacher Institute acknowledges that:

“In 2019, conservative state legislators raced to enact an unprecedented wave of bans on all, most or some abortions, and by the end of the year, 25 new abortion bans had been signed into law”

And an encouraging new Marist/Knights of Columbus poll  shows that a majority of Americans (65%) would vote for candidates who back abortion restrictions and nearly two-thirds of Americans oppose abortion if the child will be born with Down Syndrome.

In addition, there are more pregnancy help centers than abortion clinics to help women and their unborn babies.

CONCLUSION

As abortions are decreasing and the abortion movement is exposed for its radical goals, it appears that more and more people are seeing the truth about abortion and the pro-life movement. Personally, I have never felt more encouraged since the Roe v Wade decision 47 years ago and especially by the inspiring words of President Donald Trump, the first sitting president to address the annual March For Life in Washington, D.C.:

“We cannot know what our citizens yet unborn will achieve. The dreams they will imagine. The masterpieces they will create. The discoveries they will make. But we know this: every life brings love into this world. Every child brings joy to a family. Every person is worth protecting….

Together, we will defend this truth all across our magnificent land. We will set free the dreams of our people. And with determined hope, we look forward to all of the blessings that will come from the beauty, talent, purpose, nobility, and grace of every American child.”

Down Syndrome, the Gift of Innocence, and Abortion

In a beautiful op-ed in the December 23, 2019 Wall Street Journal titled “Down Syndrome and the Gift of Innocence” , William McGurn writes about a small group of contemplative nuns called the Little Sisters Disciples of the Lamb who reside in France.

The order was founded in 1985 by Mother Line, now prioress, and Sister Véronique, who felt a vocation but could not find an order to accept her because she has Down syndrome. Now there are 10 sisters (eight with Down syndrome) who exist so that “those who are in last place in the world”—women with Down syndrome—can “hold in the church the exceptional role of spouses of Christ. In practice this means that able-bodied sisters devote their lives to ensuring their fellow sisters with Down syndrome can live their vocations.”:

“The smiling faces of our little sisters with Down syndrome are a great message of hope for many injured families,” Mother Line tells me. “Our smallness will also say that we are made for very great things: to love and to be loved.”

And while the rest of the world dismisses innocence as naïve or childish, Mr. McGurn writes that:

“the nuns choose to cherish and exalt innocence—and the unconditional love and trust that comes with it—as an example of how we are meant to live with one another.”

DOWN SYNDROME AND ABORTION

In contrast to these wonderful nuns, a federal judge recently reversed his own ruling on a hard-fought pro-life abortion law passed in my home state of Missouri by blocking a provision that prohibits discriminatory abortions on unborn babies with Down syndrome.

Missouri was set to join several other states that passed such laws until U.S. District Judge Howard Sachs reversed his decision.

It is hoped that this decision will be appealed. As Justice Clarence Thomas has previously written about such laws that protect unborn babies from eugenic discrimination:

“… this law and other laws like it promote a State’s compelling interest in preventing abortion from becoming a tool of modern-day eugenics.”

and

“Although the Court declines to wade into these issues today, we cannot avoid them forever. Having created the constitutional right to an abortion, this Court is dutybound to address its scope.” (All emphasis added)

AN “ACCEPTABLE” PREJUDICE?

A few days ago, the head of the American Civil Liberties Union (ACLU)  Disability Rights Project Susan Mizner defended abortion for unborn babies with Down Syndrome writing that:

“There is no question that stigma, prejudice, and misconceptions about people with disabilities are widespread. But forcing someone to carry a pregnancy to term against their will does nothing to tackle underlying and systemic ableism and discrimination against people with disabilities.

“On the contrary, forced pregnancy threatens a person’s physical, mental, and emotional health, as well as the stability and wellbeing of their family, including existing children.” (All emphasis added)

As an RN and mother who had to fight medical discrimination against my daughter Karen who had both Down Syndrome and a heart defect as well as a past board member of the St. Louis Down Syndrome Association, I take great exception to this dangerously inaccurate statement. We can never eliminate prejudice by eliminating people with disabilities before or after birth.

CONCLUSION

I applaud the Little Sisters Disciples of the Lamb in France who cherish their sisters with Down Syndrome who have so much to give to the world and I am horrified by the several states that have now passed laws that allow abortion for any reason at any time during pregnancy or even after birth.

Although unborn babies with Down Syndrome are especially at risk, we must remember that ALL children enter the world with the “gift of innocence” and none deserve to be killed before birth.

 

A Very Special 6th Birthday Party

Recently, I was invited to a 6th birthday for a special boy.

“John” (as I will call him for privacy reasons) was born a healthy baby boy. But when he was a few months old, he stopped breathing and 911 was called. Apparently, John had a near-SIDS (sudden infant death syndrome) event.

John was resuscitated but the doctors in the emergency room told the parents that he had severe brain damage.

John’s mom was a special education teacher and told the doctor that she often cared for severely brain-injured children and would do the same for her son. She was just so glad he survived.

I was called about John to help with information and support.

At one point months later, John became critically ill and was hospitalized. The doctors did what they could but said his chances of survival were bleak.

However, John surprised us all by getting better and going home. He was tough!

It takes a lot to care for a child on a ventilator and feeding tube at home but John’s parents were up to the task, along with help from their church and family members. John’s family later expanded when his two younger sisters were born. They obviously love their big brother.

When John had his 6th birthday a few weeks ago, it was a joyous occasion with family and friends. I was delighted to be invited. Although John is still severely brain-injured and still on a ventilator and feeding tube, he spent much of the party cuddled in his grandfather’s arms. He was the center of attention.

John’s grandfather told me about his brother who was born with cerebral palsy decades ago. The family was told that he would not live long but with supportive siblings and parents, the brother lived a good life until he died at age 60. The grandfather is still proud of his brother.

CONCLUSION

When my Karen was born with Down Syndrome in 1982, I didn’t really know what to expect and I was shocked by negative attitudes-even from her medical professionals.

But that was wonderfully counteracted by the other parents in the St. Louis Down Syndrome Association who told me how their child was a blessing and how that child opened their hearts and eyes. I was awed by these other parents’ concern, help and support for my daughter and our family.

I later asked these amazing parents if they were like this before their child was born. Every one of them said no and that it was their child that led them to open their hearts and eyes.

I eventually discovered how true this is even though my Karen only lived 5 1/2 months and I’ve been blessed by meeting other children with special needs and their parents.

Too often, people assume that a child with special needs is automatically a family tragedy.

The truth is that children with even severe disabilities can teach the rest of us so much about love, acceptance, true happiness and resilience.

And, of course, faith.