A Dark Side of Prenatal Testing

In her February 2018 article “Prenatal Testing and Denial of Care” , Bridget Mora exposes another dark side of prenatal testing: refusal to treat. Ms. Mora is the community education and communications coordinator for Be Not Afraid, a nonprofit that supports parents experiencing a prenatal diagnosis and carrying to term.

While most people have heard of amniocentesis (using a needle to extract and analyze the fluid surrounding an unborn baby in the second trimester), many people are unaware of the screening blood tests that have now become virtually routine for all pregnant women.

The difference is that blood screening tests may indicate a probability or risk score that a baby has a chromosomal anomaly, but a definitive diagnosis can only be made through amniocentesis or CVS (Chorionic villus sampling) using a needle to take a sample of tissue from an unborn baby’s placenta for analysis in the first trimester. Tragically, some parents make a decision to abort based on just a blood screening test.

Ms. Mora tells the story of Oliver Keith whose parents refused amniocentesis because of the risk of miscarriage. When an ultrasound showed abnormalities that suggested a genetic condition like Trisomy 13 or 18, the parents agreed to a blood test when the doctor told them that a diagnosis would ensure the proper treatment when Oliver was born.

However, when the results of the tests showed that Oliver had Trisomy 18, their son was “denied routine care during labor as well as the heart surgery that the same doctors had said would be necessary before the trisomy 18 diagnosis”.

The parents felt that Oliver was being discriminated against because of his trisomy 18 diagnosis and tried to give Oliver every chance at life but, in the end, Oliver died.


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.

Ms. Mora has done a great service in researching newer developments in prenatal testing that now include routine blood tests for all expectant mothers regardless of age or risk factors.

She notes that most parents are simply looking for reassurance that their baby is healthy.

But she also notes:

“Parents may not understand the difference between screening and diagnostic tests or be prepared for the consequences of a poor diagnosis or prognosis.

Very few genetic conditions can be treated prenatally, so if a disability is found, the “cure” proposed by the medical team is frequently abortion. In our utilitarian culture, prenatal screening has increasingly become a search-and-destroy mission to detect and eliminate babies with disabilities as early in pregnancy as possible.

Pressure to abort quickly, before they have had time to process a poor diagnosis and grieve the loss of the healthy child they expected, can throw parents off their usual moral compass.”


Ms. Mora is especially concerned about a newer and expensive cell-free fetal DNA test (also called NIPT) done in the first trimester using the mother’s blood. She says that although promoted as up to 99% accurate, independent laboratory studies have found that a positive result for a genetic condition can be incorrect 50% of the time or more.

Ms. Mora writes:

“Despite these serious limitations, adverse NIPT results all too frequently lead parents to have an abortion or doctors to alter treatment.

If a disability or potential disability is detected, the pressure to abort quickly may become intense. Although most parents undergo prenatal screening or testing with no plan to abort on the basis of the results, 80 percent decide to abort after being told their unborn baby has a severe congenital anomaly.

Counseling from physicians is often directive and parents may be encouraged to terminate on the basis of the doctor’s personal biases. A survey conducted by the American College of Obstetricians and Gynecologists found that 90 percent of the doctors who responded considered abortion to be a justifiable response to uniformly fatal fetal anomalies. Sixty-three percent considered abortion to be a justifiable response to nonfatal anomalies.” (Emphasis added)


Bur even when the prognosis for an unborn baby is terminal, Ms. Mora maintains that parents usually want a better option than abortion and states that when offered perinatal hospice support, about 80% of US parents choose to carry their child to term and studies have found that “there appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis.”

And as I wrote in “Parent Power”, parents themselves are changing physician attitudes towards children with genetic conditions and even producing laws like “Simon’s Law” which passed in Kansas in 2017.

In the end, knowledge is power and discrimination against people with disabilities is wrong no matter how small the person.


Six Things You Need to Know about Physician-Assisted Suicide

This article was originally published in The Public Discourse on December 19, 2017

Six Things You Need to Know about Physician-Assisted Suicide

Pull quote: Is the real healthcare crisis not enough physician assisted suicide laws? Or
is it the staggering and increasing number of people losing their battles
with mental illness and committing suicide?

It has been twenty years since Oregon’s physician-assisted suicide law took
effect after a public referendum. Since then, four other states have
legalized physician-assisted suicide.

Polls seem to show strong public support for physician-assisted suicide. They ask questions like this one from a  2017 Gallup poll: “When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should
not be allowed by law to assist the patient to commit suicide if the patient
requests it?”

Unfortunately, most people have only a vague idea about what such laws
actually say and do. Here are six things you must know before you decide
whether to support or oppose physician-assisted suicide.

1. Pain or any other suffering is not a requirement for a person seeking
assisted suicide; “a disease that cannot be cured” can include manageable
conditions like diabetes as well as terminal illnesses like cancer.

None of the US laws are restricted to patients experiencing pain, which can
be addressed in ways that do not deliberately kill the patient. In 2016, for
example, almost half of patients using assisted suicide in Oregon cited their reason for seeking death as “Burden on family, friends/caregivers” while just 35 percent cited “Inadequate pain control or concern about it.”

2. Medical professionals participating in physician-assisted suicide are
immune from accountability and standards of due care.

“No person shall be subject to civil or criminal liability or professional
disciplinary action for participating in good faith compliance with”
Oregon’s law. Thus any licensed doctor (or other healthcare provider), with
or without experience and regardless of his or her medical specialty, can
write a lethal overdose prescription for a patient as long as he or she
claims to be in “good faith compliance.” As a legal standard, this test is
effectively meaningless, because it relies only on the physician’s word.

The physician is not required to be-and often is not-the patient’s primary
care doctor. Many physicians do not want to be involved in this process,
according to “Compassion & Choices,” an organization that promotes the legalization of physician-assisted suicide throughout the United States. When one doctor (or many) conclude that it would be irresponsible to give a lethal overdose to a patient, such
organizations encourage patients to find a doctor with lower standards.

No other medical intervention has such immunity protection from lawsuits or
criminal investigation. In addition, no other medical intervention is so
devoid of standards for the clinical expertise or education required of the
physician involved.

3. Physician-assisted suicide does not involve the stringent documentation
and oversight required for other medical interventions.

In all jurisdictions where physician-assisted suicide is allowed, to
prescribe a lethal overdose the doctor need only fill out the required state
forms that include a consultation with a second physician who agrees.
Neither doctor is required to have a professional relationship with the
patient before the physician-assisted suicide request.

Documentation of physician-assisted suicides relies on doctors’
self-reporting. There is no requirement that the actual taking of the lethal
overdose be witnessed by a medical professional or anyone else. This means
that there is no safeguard against medical complications, coercion by family
members, or other problems.

The Oregon law also specifies that, “Except as otherwise required by law, the information collected shall not be a public record and my not be made available for inspection by the public”, after which the original forms are destroyed.

Unfortunately, the immunity protections and secrecy surrounding even the minimal self-reporting in state-level assisted-suicide laws eliminate the possibility of future potential lawsuits or prosecutions for abuse. They keep alive the myth that there are strong safeguards in the law that eliminate problems like coercion or elder abuse.

4. The cause of death must be falsified.

States with physician-assisted suicide laws require that the cause of death is reported as death from an underlying condition rather than the lethal overdose, supposedly to ensure the patient’s privacy. But this clearly violates the standards set for coroners
and medical examiners by the Centers for Disease Control. Those standards require accuracy in determination of death because “The death certificate is the source for
State and national mortality and is used to determine which medical conditions receive research and development funding, to set public health goals, and to measure health status at local, State, national, and international levels.”

Falsified death certificates also quietly function to smooth over any problems with life insurance policies that have suicide clauses denying death benefits if the insured commits suicide within two years of taking out a policy. And since doctors are only required to “recommend that the patient notify next of kin” about the plan for assisted suicide, the rest of the patient’s family may never know the real cause of death. This means that they are also deprived of the chance to reassure their loved ones of their
support and willingness to help take care of them until their natural death.

5. Assisted suicide laws promote discrimination against suicidal people.

The usual standards for caring for a suicidal person include intensive management to prevent suicide attempts. These are changed in physician-assisted suicide: “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” Only the evaluation of a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required . It is shocking that only 3.8 percent of those seeking physician-assisted suicide in Oregon were referred for psychiatric
evaluation in 2016. Patients with dementia and with clinical depression that had existed for years before they contracted a physical illness have died under the Oregon law.

6. Suicide is contagious.

A 2015 article in the Southern Medical Journal titled “How Does Legalization of
Physician-Assisted Suicide Affect Rates of Suicide?” studied Oregon’s and Washington’s rates of non-assisted suicide after assisted suicide laws were passed. Despite claims that assisted suicide laws would reduce other suicides or only substitute for them, the authors reached the disturbing conclusion that “Rather, the introduction of PAS (physician assisted suicide) seemingly induces more self-inflicted deaths than it inhibits.”

This does not surprise me. In 2009 my thirty-year-old, physically healthy daughter Marie died by suicide. She killed herself using a technique she learned after visiting assisted suicide/suicide websites and reading Final Exit (1991) by Derek Humphry, founder of the Hemlock Society (an organization that merged with another group to form Compassion & Choices). The medical examiner called her suicide “textbook Final Exit.”

Adding to our family’s pain, at least two people close to Marie became suicidal not long after her suicide. Luckily, they were saved, but suicide contagion, better known as “copycat suicide,” is a well-documented phenomenon. Often media coverage or publicity around one death can encourage other vulnerable people to commit suicide.

According to the Centers for Disease Control and Prevention, suicide rates have been
increasing since 2000 after decades of decline. Suicide is now the tenth leading cause of death in the United States, with more than 44,000 people dying by suicide every year. Suicide costs society over $56 billion a year in combined medical- and work-loss costs, not to mention the enormous toll suicide takes on family and friends. Oregon’s suicide rate is more than 40 percent higher than the national average.

Is the real healthcare crisis not enough physician-assisted suicide laws? Or is it the staggering and increasing number of people losing their battles with mental illness and committing suicide?

No matter what Compassion & Choices says, physician-assisted suicide is not a civil right or just one of an assortment of morally neutral end-of-life options. It’s time to stand up and fight to keep the medical profession from abandoning its most fundamental ethical principles.

Nancy Valko, RN, ALNC, is a longtime writer and speaker on medical ethics issues who recently retired from critical care nursing to devote more time to consulting and volunteer work. She is also a spokesperson for the National Association of Pro-Life Nurses.

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Compassion and Choices Celebrates as the Massachusetts Medical Society Becomes the 10th State Medical Association to Succumb to the Physician-assisted Suicide Agenda

In 1980, the Hemlock Society (now known as Compassion and Choices) was formed to  work for the legalization of physician-assisted suicide by proposing state legislative bills, voter initiatives and public advocacy.

These efforts failed until finally in May 1994, the Oregon Medical Association changed its position opposing physician-assisted suicide to neutrality.

Six months later, Oregon voters approved the very first US physician-assisted suicide law 51% to 49%.

Not surprisingly, now the Oregon Medical Association “supports the position that ‘death with dignity’ (aka physician-assisted suicide) is part of the doctor-patient relationship”.

Obviously, the neutrality of the medical association was a big factor in getting the first physician-assisted suicide law passed in the U.S. as well as its eventual integration into Oregon’s health care system.

Now, Compassion and Choices, the now well-funded promoter of assisted suicide and other death “choices”, is celebrating that:

“The Massachusetts Medical Society is the 10th American Medical Association chapter that has dropped its opposition to medical aid in dying and adopted a neutral stance on the practice, including nine of them in the last two years. The others are the California Medical Association in 2015, Colorado Medical Society in 2016, Maryland State Medical Society in 2016, Medical Society of the District of Columbia in 2016, Maine Medical Association in 2017, Minnesota Medical Association in 2017, Nevada State Medical Association in 2017, Oregon Medical Association in 1997 and Vermont in 2017.” (Emphasis added)

And that:

“Massachusetts’ ‘neutral engagement’ position is even better than a simply neutral position,” said Rebecca Thoman, M.D., campaign manager for Doctors for Dignity for Compassion & Choices. “It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Ironically, as the Boston Globe reported in January 2017,:

“The vote before the Massachusetts Medical Society was whether to approve a survey — just a survey — of members’ attitudes toward “medical aid in dying.” …

In the end, the policy-making body decisively endorsed the survey and approved $25,000 to fund it — a sign that the Massachusetts Medical Society may be reconsidering its historic rejection of what it has called “physician-assisted suicide.’’ It comes as this movement to give terminally ill patients an option to end their life at a time of their choosing is gaining traction, propelled in part by some physicians’ groups dropping their longstanding opposition. (Emphasis added)

The surveys were ultimately sent to 25,000 doctors but only 12 to 13 percent were returned. Of those returned, approximately 60 percent of respondents wanted the medical society to rescind its opposition to physician-assisted suicide, while 40 percent wanted to keep the policy.

The most fundamental medical ethic of not killing or helping patients kill themselves must not be reduced to a popularity contest.

If this radical change in medical ethics results in the Massachusetts legislature legalizing physician-assisted suicide or by yet another voter referendum, the Compassion and Choices agenda to legalize assisted suicide throughout the U.S. will continue to accelerate to the detriment of the health care system, ethical health care providers and all medically vulnerable people.

Killing with Love?

Two disturbing news items in the UK recently caught my eye. Both involved actions considered criminal in the past, but now reconsidered as acts of love. Unfortunately, we have had similar cases here in the US.


In a November 17, 2017 UK Telegraph article, a 59 year old chemist named Bipin Desai, admitted pouring morphine into his father’s fruit smoothie and then injecting the diabetic father with insulin. The judge directed the jury to find Mr. Desai not guilty of murder but rather of assisted suicide.

The judge told Mr. Desai that:

“Your acts of assistance were acts of pure compassion and mercy. Your father had a solid and firm wish to die. For him, being assisted to die would be fulfilling his wish of going to heaven to see his wife and being put out of his misery.”

Ironically, the father was not even terminally ill but rather “he had just had enough of life and there are no real authorities who deal with that situation.” (Emphasis added)

Mr. Desai was allowed to go free with a suspended nine month prison sentence for assisting his father’s suicide and told by the judge:

“You are free to now go with your family and start the process of rebuilding your life.”

And apparently still able to be an heir.


Omodele Meadows of the UK was given $12 million dollars for the “wrongful birth” of her now 6 year old son Adejuwon.

Four years before she became pregnant, Ms. Meadows had a test to see if she had the gene linked to hemophilia because a relative had a child with the condition. Ms. Meadow’s test mistakenly showed that she did not have the gene.

After her son was born and found to have both hemophilia and autism (a condition that has no prenatal test, at least for now), she sued the doctor who gave her the results. Ms Meadows claimed that if she knew she had the gene for hemophilia, she would have had her son prenatally tested and aborted him.

The judge wrote:

It cannot be easy for any mother to contend bluntly that her child should not have been born. ‘Her love for her son shone through from her written statements. ‘She had specifically sought to avoid bringing a child with hemophilia into the world, knowing the suffering that condition causes.” (Emphasis added)

The judge added that Ms. Meadows now loves her son dearly and had only brought the claim “to provide a better life for her son”.

Did anyone wonder what Baby Adejuwon will think if or when he finds out about the circumstances of his mother’s case?


Before the legalization of abortion and euthanasia, we had consensus that killing a person because he or she was ill or disabled was absolutely wrong and unjust.

Now we are urged to accept that killing can be a loving act and should not be criminalized. And, if a diagnostic mistake is made and an abortion avoided, parents who would have aborted should be compensated, even richly.

What does that tell people who are ill or who have disabilities as well as all of us who lovingly care for these people? What does this do to our laws, ideals and attitudes?

In our hearts, we all really know that caring for lives, not killing, is the right thing to do. When we insist on ignoring this truth, tragedies like these two cases will not only continue but also devolve into terrible social, medical and legal policies that will affect us all if we do not speak out now.

A Thanksgiving Story

This fall, an expectant mother from a small town in Missouri found out that her son had spina bifida, a condition where the spinal column does not close all the way during the baby’s development. This can cause a range of serious, even life-threatening problems such as nerve damage, paralysis and fluid buildup around the brain.

In the past, babies with this condition were operated on soon after birth but in the last few years, intrauterine (inside the womb) surgery was developed to treat the baby before birth to get the best possible outcome for the baby. In an October 23, 2017 New York Times article about one such surgery, the doctors claimed that the optimal time for this surgery is 24 to 26 weeks.

Although many women tragically abort their babies with spina bifida, this brave expectant mother wanted for this surgery for her son. The surgery was scheduled at a large medical center in St. Louis.

Hearing about this, a call was put out to the St. Louis pro-life community to help this mom. One person donated an apartment near the medical center for her before the surgery because she was on bed rest and afterwards for recovery.  Many people made meals and helped in other ways.

Mother and baby are now doing well and we are all praying for an uneventful final weeks of pregnancy and a safe delivery.

Especially at Thanksgiving, we give thanks for the blessings we enjoy. Perhaps we should also give thanks that we have such wonderful, selfless people like those in this story!

The Changing Rules for Organ Donation


Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.


In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)


Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)


Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.


“What Kind of Society Do You Want to Live In?”

This month, CBS News aired a TV show titled “Why Down Syndrome in Iceland Has Almost Disappeared. Iceland encourages all expectant mothers to test their unborn babies for birth defects and, when a probable (85% accuracy, according to the show) Down Syndrome  diagnosis is made, almost all mothers have an abortion. This is the highest percentage of all countries. But Down Syndrome is not being “eradicated”. The children are.

In the show, an Icelandic mother who has a 7 year old daughter with Down Syndrome was interviewed. She said about her daughter:

“I will hope that she will be fully integrated on her own terms in this society. That’s my dream, Isn’t that the basic needs of life? What kind of society do you want to live in?” (Emphasis added)

A counselor at an Icelandic hospital had another view and

“tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.” (Emphasis added)

Horrifyingly, she also shows the reporter “a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.” (Emphasis added)

The counselor ends by saying:

“We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.” (Emphasis added)


In June, I wrote a blog “Baby Doe and Karen-35 Years Later” about the medical discrimination that both of those gentle souls with Down Syndrome faced in their short lifetimes.

But as frightening as that discrimination was, the reaction from others-even family-when Karen was born was the most heartbreaking.

When Karen was born, there were no congratulations or smiles from the staff or relatives even though Karen was unarguably a beautiful and serene baby girl. But although shattered by the initial (and wrong) diagnosis of an inoperable heart defect, I was determined that Karen be welcomed at least by me. So on the night she was born, I sang “Happy Birthday” and told her how much I loved her through my tears.

After Karen tragically died almost 6 months later, even some family members told me that I should not have tried so hard to save “that baby”.

My point is that it is not enough to just be against aborting or withholding treatment from babies with disabilities. They and their parents must feel supported and encouraged instead of isolated or pitied.

Now that’s the kind of society I want to live in!

Miracle Babies

Yesterday, we learned that Baby Charlie Gard is expected to die soon as his heartbroken parents have decided to remove his life support because a US doctor had told them it was now too late to give Charlie nucleoside therapy. According to a BBC article, “US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.” Baby Charlie’s parents are now asking the court to allow them to take Charlie home to die.

We have learned much from Baby Charlie’s tragedy, not only about the perils of government deciding who should live and who should die but also about the love and commitment of his dedicated parents and the importance of the worldwide support they received.

Now we know there is more hope for babies born with conditions like Baby Charlie’s because of the publicity and probably more parents will try to find alternatives when they are given a poor or fatal prognosis.

Here are two cases where the parents did just that and saved their children.


During the fight to let Baby Charlie get experimental treatment, U.S. Congresswoman Jaime Herrera Beutler led the effort in the US Congress to get residency for Baby Charlie. That would have expedited efforts to help Baby Charlie receive the experimental treatment in the US.

Congresswoman Beutler’s interest was also personal.

In 2013, she and her husband found out that their unborn baby Abigail had Potter’s Syndrome, a fatal condition where the kidneys are missing. She and her husband were told that no one ever survived this condition and abortion was offered more than once.

They looked for other options and found there was an experimental treatment given before birth for other conditions that might work on their Abigail. The parents contacted many different hospitals before Johns Hopkins finally agreed to try.

Today, Abigail is a healthy four year old and has a kidney donated by her father a year ago. She is the first known person to survive Potter’s Syndrome, thanks to her dedicated parents.


Also known as the “boy with no brain”, four year old Noah Wall was born in the UK with a rare complication of spina bifida that caused fluid to compress his brain down to an estimated less than 2% brain tissue.

The condition was discovered before birth and the parents were told that even if he survived birth, he would be severely mentally and physically disabled. Abortion was offed 5 times.

But Noah did survive birth and an immediate surgery was done for his spina bifida and a shunt was installed to drain excess fluid from his brain.

Thanks to the efforts of his devoted parents and sister to keep his brain stimulated, Noah has confounded the doctors by the regrowth of his brain. When a CT scan of his brain was done years later, doctors found that Noah now has 80% of his brain tissue. Even more amazing to the doctors, Noah has developed into a charming, expressive and empathetic little boy who now attends a local primary school, despite still having  some physical and mental impairments.

This year,  a documentary about Noah was made. I saw it myself a few weeks ago on TV and I highly recommend seeing it.

And as the UK’s Daily Mirror newspaper article wrote:

“Neurosurgeon Dr Nicholson sums up the larger importance of Noah’s incredible story:

‘He teaches the medical profession that you can’t ever know’.”


Over the years, medical progress has made great strides while medical and legal ethics have deteriorated because of a “quality of life” mentality.

This has led to medically discriminatory attitudes affecting people with disabilities as I personally found out when my daughter Karen was born with Down Syndrome and a severe heart condition.

All children with disabilities deserve both a welcome and a commitment to help them have the best life possible from not only their parents but also from the rest of us.

35 Years after Baby Doe Continued: The Simon Crosier and Charlie Gard Cases

Last week, I wrote about Baby Doe and my daughter Karen and how both were medically discriminated against 35 years ago because they were born with Down Syndrome. The ethical rationale in both cases help set the stage for the legalized assisted suicide/euthanasia we struggle against today.

Unfortunately, the legal right to live for children with disabilities and their parents continue to be under attack today with the cases of Simon Crosier and Charlie Gard.


Last August, I wrote a blog titled “Parent Power” about the efforts by some legislators in Missouri and Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility policies in even some Catholic hospitals that led to the death of Simon Crosier, a baby born with Trisomy 18.

Since that blog, Kansas finally did pass Simon’s Law but in Simon’s home state of Missouri, the bill is still stuck in committee even though new information about the life expectancy and prognosis for such children led to an opinion editorial in the prestigious Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment.

The fight for Missouri’s Simon’s Law will continue.


On June 30, 2017, the parents of 11 month old Charlie Gard lost their appeal to European Court of Human Rights to keep their son with a rare genetic disorder on life support and take him to the US to try an experimental treatment. The appeal was filed after Britain’s Supreme Court decided to let the hospital remove Baby Charlie’s life support, finding that prolonging Charlie’s life was “not in his best interests.”

Baby Charlie has a rare genetic disorder affecting his muscles and brain that has caused  brain damage, seizures and prevents him from breathing on his own.  A neurologist in the US has suggested an experimental nucleoside treatment that might, in theory, offer some benefit although the treatment has not been tried before in a situation like Baby Charlie’s.

On Facebook, Charlie’s parents said that they were “heartbroken” and aghast that the hospital would not even allow them to take their son home to die.

Charlie’s parents have been fighting for months for the right to take their son to the US try this experimental treatment. By the time of the court decision, $1.7 million had been raise through crowdfunding media to cover expenses.

Unlike the Simon Crosier case, the withdrawal of treatment decision by the hospital was not secret.

Apparently under British law, parents do have the right to make decisions about the treatment of their children unless the treatment is not in a child’s “best interests” and usually it is parents who refuse treatment for their children on moral of religious grounds who end up in court.

The Charlie Gard case has caused enormous conflict among ethicists, lawyers and even religious leaders across the world as well as the general public.

However, in the last few days, Baby Charlie and his parents gained support from two important people: Pope Francis and US President Donald J. Trump.

At first, a Vatican official issued a statement on Baby Charlie that “We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” But a few days later and after much criticism of the first statement, Pope Francis expressed hope that the desire of 10-month-old Charlie Gard’s parents “to accompany and care for their own child to the end” will be respected. (Emphasis added)

Then, after a July 3, 2017 offer by President Trump to help, an unnamed US hospital came forward to offer free treatment to Baby Charlie.


On their GoFundMe page , Baby Charlie’s parents wrote:

If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s.

We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx (Emphasis in original)

Over my decades of nursing experience, I have seen people decide to try experimental treatments because they hoped for a cure, improvement or at least to help doctors learn more that may help someone else later.

Sometimes the treatments worked and sometimes they didn’t but after talking with these patients (or parents), I could not help but admire their love, courage, faith and determination.

May God bless Baby Charlie, Baby Simon and their parents!

Baby Doe and Karen-35 Years Later

When I started nursing school 50 years ago, medical ethics was not a course but rather common sense principles incorporated into our education. There was no controversy about not harming patients, integrity, equality of treatment regardless of status, etc.

So, of course, abortion and euthanasia were unacceptable and even thinkable in those days.

I particularly remember one teacher who told us about the hypothetical situation of a child with Down Syndrome whose parents wanted to let their baby die and how we naturally had to put the interests of the child first. This kind of protection for patients was routine both ethically and legally in those days.

In 1982, I remembered that situation when Baby Doe,  a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe), was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court after the Indiana Supreme Court ruled 3-1 against saving him.

My husband, a doctor, and I were appalled when we first read about Baby Doe in the newspaper and my husband suggested that we adopt the baby ourselves and pay for the surgery.

I said yes but with some reluctance since I was already pregnant with our third child and our other children were just 5 and 3. But who else was better situated than us to care for a child with a disability who needed surgery?

In the end, we were too late to save Baby Doe. We found out that Baby Doe’s parents had already rejected the many other families who tried to adopt him.

Five months later, I gave birth to my daughter Karen who also happened to have Down Syndrome and a life-threatening condition that needed surgery.  Karen was born with a complete endocardial cushion defect of the heart  that the cardiologist told us was inoperable. We were told to just take her home and our baby would die within 2 weeks to 2 months.

I was heartbroken and cried for 3 days in the hospital before I finally got mad. My obstetrician never came back to check on me in the hospital even though I had a C-section and I demanded a second opinion on her heart condition in case the cardiologist was biased against children with Down Syndrome.

I insisted on leaving the hospital early with my daughter because I wanted as much time as possible with her and especially because I realized that I needed to research Karen’s heart condition to effectively advocate for her.

I joined the St. Louis Down Syndrome Association which helped me enormously, especially with my research and emotional support. Fortunately, it turned out that the initial prognosis was wrong and the cardiologist told us that Karen’s heart could be fixed with just one open-heart operation at age 6 months.

I was elated until the cardiologist told me that he would support my decision to operate “either way”, meaning I could refuse surgery just like Baby Doe’s parents.

I was furious and told him that the issue of Down Syndrome was irrelevant to Karen’s heart condition and that my daughter must be treated the same as any other child with this condition. I also added that if he were biased against people with Down Syndrome, he could not touch my daughter.

To his credit, this doctor recognized the injustice and because of Karen, he eventually became one of the strongest advocates for babies with Down Syndrome.

Unfortunately, I ran into other medical professionals caring for Karen who were not so accepting. One doctor actually told us that “people like you shouldn’t be saddled with a child like this” and another doctor secretly wrote a DNR (do not resuscitate) order against my instructions at the time. It was then that I realized that my so-called “choice” to save my daughter was really a fight.

Tragically, Karen died of complications of pneumonia when she was just 5 ½ months old and just before her scheduled open-heart surgery. I will always miss her but I am so grateful that I was her mother. Karen changed many lives for the better, especially mine.

I became active in the Down Syndrome Association, promoted President Reagan’s “Baby Doe” rules ,  provided babysitting/respite for many children with various disabilities, and even got a chance to talk to then Surgeon General C. Everett Koop about setting up a national hotline for new parents of children with disabilities to find resources.

But most importantly, I was determined to find out what had happened to medical ethics  over the years since nursing school that resulted in the Baby Doe tragedy and hopefully help reverse the mindset that people with disabilities were “better off dead”.

What I discovered was a landmark 1979 book titled “Principles of Biomedical Ethics” written by Tom Beauchamp PhD, a professor of philosophy, and James Childress PhD, a theologian and also a professor of philosophy. Neither one had a medical degree.

They devised these four principles for medical ethics:

  • Autonomy – The right for an individual to make his or her own choice.
  • Beneficence – The principle of acting with the best interest of the other in mind.
  • Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.
  • Justice – A concept that emphasizes fairness and equality among individuals.

Although all these principles were considered equal, it wasn’t long before autonomy became the cornerstone principle in ethics and law, ultimately leading not only to Baby Doe but also to the legalization of assisted suicide/euthanasia.

Ironically, all these principles have been used to justify cases like Baby Doe’s as well as assisted suicide/euthanasia.

Beneficence and non-maleficence have become a ways to see death as an actual blessing to real, perceived or potential suffering. Ominously, the justice principle has become the rationale for rationing under the guise of supposedly not wasting scarce healthcare resources .


35 years after Baby Doe, some things like medical technologies and education for people with disabilities are better but many things like assisted suicide/euthanasia have pushed the ethics of death even farther and are a threat to all of us and our loved ones.

The Baby Doe tragedy should have been a fire alarm for the evils we see today but it is never too late or impossible to try to promote a culture of respect for all lives.