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

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

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

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

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

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

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

But, as the article rightly states,:

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

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

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

DIAGNOSIS AND TREATMENT

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

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

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

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

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

CONCLUSION

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

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

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

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

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

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

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

Life must be our highest priority!

What Will It Take? Part Two -Does Abortion Really Help Women?

In August 2019, I wrote a blog titled “Pro-abortion Desperation in Missouri” about the last Planned Parenthood abortion clinic in Missouri losing its license because of numerous health and safety violations but continued to operate only because of several temporary injunctions by a judge.

The clinic finally closed only after the Supreme Court’s June 2022 Dobbs v. Jackson Women’s Health Organization decision returned abortion law to the states.

Unfortunately, the pro-abortion choice response to that decision has resulted in terrible turmoil and animosity.

Now the attacks on pro-life pregnancy centers and churches with few arrests and prosecution of peaceful pro-life demonstrators are continuing unabated.

To try to portray abortion as a positive empowerment for women, Planned Parenthood has tried the “Share Your Story” and “Shout Your Abortion— Normalizing abortion and elevating safe paths to access, regardless of legality” campaigns to increase abortion support and activism. (The National Association of Pro-life Nurses countered with “Shout out Your Adoption!“, pointing out that “Adoption is a wonderful act of love and one of the best alternatives to abortion.”)

Now Planned Parenthood has another strategy for increasing abortion support and activism originally published in MS Magazine on 4/12/2022 and titled “A Firsthand View of the Crisis Ahead for Abortion Rights—and What We Should Do About It”

The article states:

“Since it seems we can no longer rely on the courts to protect these rights, our only solution is to pass a new federal law that will protect abortion rights in all 50 states. The Senate’s recent failure to pass the Women’s Health Protection Act makes it clear that we will need a greater pro-choice majority than we have today to pass this new legislation.

This will not happen in one election cycle, and it will take a commitment of time, energy and resources beyond that which we have been expending to date. We have to get all the voters who support reproductive rights registered and encourage them to vote. We have to elect representatives at all levels of government who will protect our reproductive rights that are currently under attack. (Emphasis in original)

THE TRAUMA OF ABORTION

And as a nurse, I have seen the mental and/or physical trauma after abortion in both friends and patients.

For example, one friend felt she had to have an abortion because the doctor said her unborn baby had little or no brain, which may not have even been true according to the doctor I knew who read the ultrasound. That doctor was devastated to learn that an abortion was done.

Knowing that I was pro-life, my friend said she didn’t want to talk about the traumatic 28 hour induced abortion but, after 5 years, she called me and said she needed to know how the hospital disposed of the body. She also revealed that she secretly hung an ornament for that baby on the Christmas tree every year.

And I wrote a November 2016 blog “Why Talk About Abortion” about one of my elderly hospice patients who told me that she was afraid to die because of a secret abortion she had 60 years ago because she believed that abortion was an “unforgivable sin” and she would go to hell. She also felt her now swollen belly due to her terminal condition was God punishing her for the abortion.

My heart went out to this woman who was suffering so much, more emotionally than even physically.

We talked for a long time and in a later visit about God’s love and forgiveness. I told her about Project Rachel, a healing ministry for women (and even men) wounded by abortion. I gave her the phone number and offered to be with her to meet a counselor or priest, but she insisted that my talking with her was enough to help. I felt it wasn’t, but she seemed to achieve a level of peace and she even started smiling! 

Rose died comfortably and apparently in her sleep about a week later.

SOME RESOURCES TO HELP WOMEN WHO ARE CONSIDERING ABORTION OR OTHERS WHO ARE HURTING AFTER AN ABORTION

  1. Support After Abortion “aspires to shift the conversation to compassion and support for those impacted by abortion” (including men)
  2. Project Rachel for women and even including how to talk to a friend who has had an abortion
  3. Birthright An organization with many resources and help
  4.  American Association of Pro-Life Obstetricians and Gynecologists states it “Promotes Dignity for BOTH our Patients!”
  5. There are also organizations like Prenatal Partners for Life and Be Not Afraid that provide support, information, resources and encouragement for carrying to term with an adverse prenatal diagnosis.

6. CareNet helps find a crisis pregnancy center in your area

CONCLUSION

Serrin M. Foster of Feminists for Life in her 2018 National Review article Women Deserve Better than Abortion: The Ultimate Exploitation of Women” perhaps said it best:

 “The reality is that there is no such thing as a safe abortion. Few unborn human beings escape a violent death, but what is underreported is the mortality of healthy pregnant women killed during or as a result of abortion.

When we know how much a woman grieves from reproductive loss through miscarriage or stillbirth, who would choose abortion? According to the Guttmacher Institute, those who have abortions come primarily from the poorest among us (75 percent), women of color (61 percent), women pursuing post-secondary degrees that would lift them out of poverty (66 percent), and mothers who already have dependents (59 percent). Half of all abortions are performed on a woman who has already had one or more abortions, proving that abortion solves nothing. Abortion isn’t empowering, and it’s not something to celebrate. Abortion is a symptom of, not a solution to, the problems faced overwhelmingly by women who don’t have what they need and deserve. Abortion is a reflection that we have not met the needs of women. Women deserve better.”

And ALL of us deserve a better and more peaceful society!

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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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.

 

Is Abortion Really the Best We Can do for Women?

As a nurse and a mother myself, it was awful to read about the newest and most radical abortion law voted in and just signed by New York governor Andrew Cuomo. The vote on this law was even met with a standing ovation in the New York legislature.

This bill would not only legalize abortions UP TO BIRTH but also revokes the requirement for medical care that must be provided afterwards if the baby survives an abortion attempt. Now, Rhode Island is poised to do the same thing.

The “right to abortion” is a central tenet of the “Women’s Rights” movement and most mainstream media complies by constantly insisting that women want and need abortion. Planned Parenthood and even Oprah Winfrey promote women to “Shout Your Abortion” to show that abortion is empowering and even necessary to women’s success.

But is this true?

“EMPOWERING WOMEN AND DEFENDING LIFE: AN INSEPARABLE CALL TO ACTION”

This is the title of a powerful article by a woman who started working at a crisis pregnancy center after she had received help there in the past when she was pregnant and money was tight.

As the anonymous author writes in FemCatholic:

“What I hadn’t realized was that, in situations of unplanned, crisis, or unwanted pregnancies, the staff set out not only to save the life of an unborn child or give women access to free pregnancy tests and resources (as important as those things are); the counselors want to give women hope, confidence, and the ability to look within and see their own strength. In short, they want to empower every woman they encounter.

My interviewer described to me the approach that counselors took in that initial appointment. She stressed that the goal of the appointment is never to convince the woman one way or another. Instead, counselors provide each woman with information regarding all options, and work to help her realize that she has the strength to do hard things, to be courageous in the face of this difficult situation, and to assure her that there are people ready to love and support her. If the woman chooses to she can continue meeting with a counselor regularly throughout her pregnancy for support, resources, and caring community.” (Extra emphasis added)

The author also writes about her other experiences:

“I have worked at two different maternity homes, and have seen firsthand the freedom that women experience when they discover and engage their strength, gifts, passions, and sheer willpower. It is incredible to watch these empowered women getting and staying sober or clean, finishing or going back to school, applying for jobs, dreaming about their futures with hope rather than despair. Women are capable of amazing things! I honestly believe one of our greatest feminine gifts is the ability to carry on in the face of even seemingly impossible situations.” (Emphasis added)

Her message is both simple and profound:

How can we, women who are passionate about empowering other women, begin to change the conversation, to advance true liberation for women in unplanned pregnancies?”

 

WHAT ABOUT THE “WORST CASE” SCENARIO WHEN THE UNBORN BABY IS DOOMED TO DIE?

In the latest Gallup poll on abortion, 67% of the people polled approve abortion “When the child would be born with a life-threatening illness”. (Of course, sometimes that diagnosis proves to be wrong.)

But is abortion really the best answer for these distressed parents?

The answer is no, according to a recent article in The Public Discourse titled “Do Women Regret Giving Birth When the Baby is Doomed to Die? by Professor Christopher Kaczor of Loyola Marymount University.

Professor Kaczor cites a 2018 article from the Journal of Clinical Ethics titled “‘I Would Do It All Over Again’: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis that found:

“Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time.” (Emphasis added)

He also cites another study titled “We want what’s best for our baby: Prenatal Parenting of Babies with Lethal Conditions” from the Journal of Prenatal and Perinatal Psychology and Health that found:

“After the birth, and at the time of the baby’s death, parents expressed thankfulness that they were able to spend as much time with their baby as possible.”

In contrast, Professor Kaczor cites a meta-analysis (a statistical analysis that combines the results of multiple scientific studies) in a Journal of Obstetric, Gynecologic and Neonatal Nursing titled “The Travesty of Choosing after Positive Prenatal Diagnosis” as well as another study to state that:

“Couples experienced selective termination as traumatic, regardless of the prenatal test revealing the fetal impairment or stage in pregnancy in which the termination occurred.”

Professor Kaczor concludes from this:

“Women who receive a lethal fetal diagnosis deserve our compassion and support. Fortunately, organizations such as Caring to Term and Perinatal Hospice & Palliative Care provide information and support for these tremendously difficult situations. Unfortunately, doctors sometimes pressure women into getting abortions and do not share with them the information that is necessary to make an informed choice. Those who receive a lethal diagnosis deserve to know the truth that 97.5 percent of women who continue pregnancies when the baby is doomed to die have no regrets about doing so—and that abortion does not have similar outcomes. Numerous studies have come to the same conclusion: giving life rather than aborting is likely to lead to greater psychological benefit for women whose baby is doomed to die.

CONCLUSION

Many  years ago with my last child, I had abortion recommended to me by two different doctors but not because the baby had an adverse prenatal diagnosis. In my case, abortion was suggested  because, due to my first husband’s severe psychosis, I would most likely wind up supporting my children alone.

The doctors’ prediction about my husband’s prognosis proved to be correct. But I was outraged that these doctors could even think about encouraging an abortion and adding more trauma to a difficult situation. And I was also outraged that they thought I was too powerless to raise 3 children on my own. I wasn’t.

Because of that experience, I now know the power of the simple phrase “I am here for you” and I have said it myself to other mothers, especially ones who were given an adverse prenatal diagnosis.

I know that choosing life is the ultimate victory!

Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion

A PRENATAL MISDIAGNOSIS

 Drew and Adriann Corpstein were devastated when they were told at 20 weeks that their unborn baby had a lethal brain abnormality called semilobar holoprosencephaly, an abnormality of brain development in which the brain doesn’t properly divide into right and left hemispheres. They were told that the baby might only live a few days as a “vegetable” and encouraged the couple to consider a late-term abortion.

Instead they decided to trust God, deliver their baby and love him for whatever time they had with him.

Baby Matthew was born on July 29 but just the next day, the doctor gave them the stunning news that Baby Matthew did NOT have the lethal brain condition but rather hydrocephalus-an excess of fluid around the brain that can be treated with a shunt. Baby Matthew could then survive and even have the chance of a fully functioning life! (Click here to see a beautiful video of Baby Matthew and his parents.)

Personally, I have seen more than one prenatal diagnosis turn out to be wrong.

Of course, prenatal testing is not always wrong but there is cause for concern about the number of unborn babies misdiagnosed, especially with some newer screening blood tests. (Please see my February blog A Dark Side of Prenatal Testing” )

But there are alternatives to abortion when the prenatal diagnosis turns out to be accurate.

As Baby Matthew’s parents mentioned in the article, they prepared for end of life care for him when he was expected to die shortly after birth and there are often such hospices available in many areas.

There are also organizations like Prenatal Partners for Life  and Be Not Afraid that provide support, information, resources and encouragement for carrying to term with an adverse prenatal diagnosis.

These organizations’ websites also have parents’ stories of their children with a range of prenatal diagnoses ranging from lethal ones like anencephaly to disabilities like Down Syndrome or Spina Bifida.

MAN SAVES GRANDCHILD FROM ABORTION

This month, I read an uplifting story that personally resonated with me.

With a heavy heart because his wife was “dead-set” on abortion for their 16 year old daughter, “Brian” took his daughter to A Woman’s Pregnancy Center  in Tallahassee, Florida. But when his daughter went in to speak to a counselor, “Brian” was surprised when a male counselor wanted to speak with him.

“Brian” didn’t know that when a client comes into A Women’s Pregnancy Center (a crisis pregnancy center) with another person, the staff determines the other person’s relationship to the client and invites the support person to speak with a different counselor about their thoughts and feelings on the client’s situation.

“Brian” told the counselor that his wife wanted their daughter to have an abortion and he wanted their daughter to be safe. But when the counselor told him, in effect, that ‘You are made in the image of God for a reason and a purpose. You are Eliza’s father AND the grandfather of her child. He is the Creator of the Universe and has given you this role. Trust Him, and He will equip you to take care of your family’, “Brian” changed.

He went to his daughter and said “Baby girl, we’ve got this.” He told his daughter to look at him and said “I’m going to take care of you.” His daughter burst into tears of relief.

Sherri Daume, director of client services at the clinic, explained about ministering to a support person when a woman is considering abortion:

“The support person is often as confused and scared for their loved one as the client herself. They might have a grandchild or niece or nephew in the picture. They usually want to help the client but don’t know how. We equip the support person with information and resources that help them support their loved one in a relevant way.”

I totally agree with this and I have personally seen the effects of such support.

When my oldest daughter Marie became pregnant at 18, her friends were “pro-choice” on abortion. But, as she told me, she knew too much about unborn babies and abortion from growing up in a pro-life family. For Marie, abortion was out of the question.

Marie was surprised but pleased when she told her “pro-choice” friends that she would not have an abortion and they enthusiastically supported her decision. Many even offered to help. However, they did not support her anguished but brave decision to release her baby for adoption.

I told her that I would support her if she decided to raise her baby herself but she decided that her and the father’s problems would keep her baby from having the best life possible.

That decision was hard for our family to accept but our beautiful oldest granddaughter turned 20 this week with the loving and proud parents who adopted her after birth. And despite my daughter’s untimely death almost 9 years ago, we are so grateful that our family will also be able to celebrate this milestone with her and the family who adopted her.

An “Acceptable” Prejudice

This week, Fox News had a story  about John Cronin, a young man with Down Syndrome who, with his father, founded and runs what is now a $4 million dollar company called Crazy Socks.

This story follows the February announcement that the new Gerber Spokesbaby is Lucas Warren who had Down Syndrome. The famous baby food company stated that Lucas “exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby.” (Emphasis added)

However, this past week, the influential ethicist Arthur L. Caplan, PhD wrote a commentary titled “Should It Be Harder to Get Abortions for Down Syndrome Babies?”
for Medscape, a password protected medical news website for health professionals.

In his commentary, ethicist Caplan recognizes the worries that “Down Syndrome is becoming increasingly rare in Europe and the United States” because of prenatal testing and abortion.

But he contends that because:

“In recent years, we have even seen kids with Down syndrome appearing on cheerleading squads, or being put into beauty pageants. It’s clear that there has been movement to not exile or isolate children in the United States with Down syndrome and to try and get them more mainstream.” (Emphasis added)

Nevertheless, ethicist Caplan accepts the ultimate “exile” of Down Syndrome by abortion because “After all, legally, you don’t have to have any reason to decide to end the pregnancy.” (Emphasis added) He additionally cites polls showing high public support for abortion for “genetic  or hereditary diseases”.

Therefore he also criticizes the few states that have passed laws to protect unborn babies testing positive for Down Syndrome from abortion. (Emphasis added)

Dr. Caplan says he is not against “offering information to parents” about Down Syndrome but he is against “mandating” that such information be given.

Perhaps Dr. Caplan has forgotten that in 2008, the Kennedy Brownback law “Prenatally and Postnatally Diagnosed Conditions Awareness Act” was overwhelmingly passed by both houses of Congress and signed into law “(t)o amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”

DOWN SYNDROME AND PREJUDICE

Unfortunately, prenatal discrimination naturally leads to postnatal discrimination as I personally discovered when my husband and I had our daughter Karen who had Down Syndrome and a heart defect. We were shocked when the cardiologist gave us the option of refusing cardiac surgery and letting her die despite the excellent chance for survival with surgery.

Although we chose life for our daughter, we later found that Karen was secretly made a “Do not Resuscitate” (DNR) during one hospitalization by our trusted pediatrician who said I was “too emotionally involved with that retarded baby”. Unfortunately, we eventually lost our Karen to complications from pneumonia before her planned surgery.

I’m sure Dr. Caplan would not be in favor of terminating anyone because of race, sex, etc. but he apparently has a “politically correct” blind spot when it comes to abortion.

Ironically, one of the state laws that ethicist Caplan objects to states:

“That Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex or diagnosis or potential diagnosis of the fetus having Downs syndrome or any other disability.”  (Emphasis added)

Sadly, that Indiana law was ruled unconstitutional in 2018 because of the legal “right to abortion” for any or no reason at all.

CONCLUSION

There is no test that will prove that an unborn baby is “perfect”, either before or after birth. For example, many of us have had our so-called “normal” children unexpectedly die or become addicted to illegal drugs years after birth. It is a sad conceit to assume that we can ensure the happiness of ourselves and our families by testing and then controlling which of our unborn babies are allowed to live.

In reality, a 2016 study “Positive attitudes prevail within families of people with Down syndrome” showed that almost 90% of families with members having Down Syndrome reported pride, love and even feelings of enrichment.

And a 2011 study in the American Journal of Medical Genetics titled “Self-perceptions from People with Down Syndrome “ found that “99% of people with Down syndrome indicated that they were happy with their lives”.

Nevertheless, as those of us who have had children with Down Syndrome know, the negative stereotypes of people with Down Syndrome persist despite these studies and often affect the medical professionals and ethicists charged with giving women and families information and options (including adoption) for conditions like Down Syndrome. Incomplete or biased information can be deadly and result in the now up to 90% of mothers who abort their unborn babies after a diagnosis of Down Syndrome.

The world is so much poorer without people like my late daughter Karen who was greatly loved. Prejudice against Down Syndrome justified as the legal “right to abortion” is lethal, not “acceptable”.

Women and their families surely deserve both comprehensive information and support when a prenatal diagnosis like Down Syndrome is made.

And every child, born or unborn, deserves a chance for life.

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.

WHAT YOU NEED TO KNOW ABOUT PRENATAL TESTING

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.”

PHYSICIAN ATTITUDES MATTER

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)

HOPE

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.

Sparks Fly at Conception-Literally

I remember the shock I felt when I first read these words in the 1973 Roe v. Wade abortion decision:

“We need not resolve the difficult question of when life begins. When those trained in the respective disciplines of medicine, philosophy, and theology are unable to arrive at any consensus, the judiciary, at this point in the development of man’s knowledge, is not in a position to speculate as to the answer.”

I could not believe that anyone could deny the obvious: life begins at conception.

Just 5 years later, the first child conceived through in vitro fertilization was born. While I recognize the several ethical problems with this procedure, I thought that at least this obviously proved that life begins at conception since the process was monitored from the beginning. Unfortunately, not to the pro-abortion movement that then pivoted to we don’t know when human personhood begins.

Ironically, presidential candidate Hilary Clinton recently revealed the hypocrisy of this pivot when she said “The unborn person doesn’t have constitutional rights” on NBC’s Meet the Press TV show. (Emphasis added)

Flash of Light

But now researchers at Northwestern University have discovered a flash of light that occurs at the moment of conception To see the video of this phenomenon, go to the link at LifeNews.com.

Here is the science behind this:

“The bright flash occurs because when sperm enters and egg it triggers calcium to increase which releases zinc from the egg. As the zinc shoots out, it binds to small molecules which emit a fluorescence which can be picked up my camera microscopes.

Over the last six years this team has shown that zinc controls the decision to grow and change into a completely new genetic organism.

In the experiment, scientists use sperm enzyme rather than actual sperm to show what happens at the moment of conception.

“These fluorescence microscopy studies establish that the zinc spark occurs in human egg biology, and that can be observed outside of the cell,” said Professor Tom O’Halloran, a co-senior author.”

And

Dr. Teresa Woodruff, a professor at Northwestern said, “We discovered the zinc spark just five years ago in the mouse, and to see the zinc radiate out in a burst from each human egg was breathtaking. It was remarkable.”

An Ethical Downside

Regrettably, the scientists say that the intensity of the flash of light also appears to indicate the egg’s quality and the embryo’s future health. This could allow more in vitro fertilization embryo selection with the destruction of embryos thought to be of lesser “quality”.

Therefore, instead of celebrating this physical proof of conception, Dr. Eve Feinberg, who co-authored the study, said

 “Often we don’t know whether the egg or embryo is truly viable until we see if a pregnancy ensues… If we have the ability up front to see what is a good egg and what’s not, it will help us know which embryo to transfer, avoid a lot of heartache and achieve pregnancy much more quickly.”

However, real heartache comes with infertility, desperate medical procedures to obtain a baby by any means possible, and the termination of life both inside and outside the womb.

But in the meantime, we can still rejoice in the apparent discovery of a true “spark of the Divine”.

 

Why New Indiana Law Bans Abortions Based on Race, Sex or Disabilities like Down Syndrome

Just three days after World Down Syndrome Day, Governor Mike Pence of Indiana signed a law that, among other provisions, bans abortion doctors from knowingly aborting an unborn baby solely because of an unborn baby’s race, sex, or genetic disability such as Down Syndrome.

Predictably, there was an immediate backlash from groups like Planned Parenthood, the mainstream media and others.

A Bit of History

In 2008, the  Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law by President George W. Bush. This law, co-sponsored by Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), was meant to provide parents receiving a pre- or post-natal diagnosis of Down syndrome or other disabilities – like cystic fibrosis and spina bifida – more information and support than had been available in the past. It was inspired by the words and actions of Brian Skotko , who has a sister with Down Syndrome and who is now a board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital.
Among other provisions, the law was written to:

coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for Down syndrome or other prenatally or postnatally diagnosed conditions, including—

the establishment of a resource telephone hotline accessible to patients receiving a positive test result or to the parents of newly diagnosed infants with Down syndrome and other diagnosed conditions

the establishment of a national registry, or network of local registries, of families willing to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies willing to place babies with Down syndrome or other prenatally or postnatally diagnosed conditions, with families willing to adopt

the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients. (Emphasis added)

However, the law was never funded due to disputes among members of Congress “over how the topic of abortion would be handled in the materials accepted for distribution.”

But while such positive initiatives went unfunded, funding has been no problem for companies developing prenatal screening tests that can be done ever more easily and earlier in pregnancy. Currently, there is a “cell-free DNA” blood test for expectant mothers that can be done as early as 10 weeks into a pregnancy that claims near perfect accuracy in detecting Down Syndrome and other conditions.

However, a three month examination of these unregulated tests by the non-profit New England Center for Investigative Reporting reported

“companies are overselling the accuracy of their tests and doing little to educate expecting parents or their doctors about the significant risks of false alarms.”

And the Center also noted that “prenatal screening tests prompt abortions”.

Even the abortion-supporting American Congress of Obstetrician and Gynecologists’ (ACOG) current position expresses concerns and states that :

“Given the potential for inaccurate results and to understand the type of trisomy  for recurrence-risk counseling, a diagnostic test should be recommended for a patient who has a positive cell-free DNA test result.”

and

“Management decisions, including termination of the pregnancy, should not be based on the results of the cell-free DNA screening alone.” (Emphasis added)

Nevertheless, a recent study showed that abortion after prenatal diagnosis of Down Syndrome reduced the Down Syndrome community by 30%.

“Disclosing Down Syndrome to Pregnant Patients: Must You Give an Upside?”

In this rather offensively titled opinion article by Arthur Caplan, PhD. who heads the Division of Medical Ethics at NYU’s Langone Medical Center, he criticizes laws like Indiana’s:

One reason that women seek abortions is because they don’t want to have a child with Down syndrome. Recently there has been a movement among people who have had children with Down syndrome to say, “That rate of abortion indicates bias. It’s not really choice. It’s fear of Down syndrome. It’s prejudice against Down syndrome.” Some families who have had children with Down syndrome say that they mean a lot to their family; that it has been a great experience to have a child even though the child has Down syndrome; they accomplish a lot, they’re happy, and people have the wrong view about it.

Some have gone further and started to change state laws to say that when you get a positive test for Down syndrome, you are required to get in touch with the Down syndrome associations in your state and get the message that balances the bias that no one wants a kid with Down syndrome.

The problem is that far too many medical professionals themselves seem to have a negative bias when it comes to conditions like Down Syndrome and see no “upside” to Down Syndrome versus abortion. New or expectant parents deserve better, especially when that professional is giving them their baby’s diagnosis.

I found that out personally not only when I had my daughter Karen but also when I talked to other parents who encountered negative attitudes from some medical professionals.

Eventually, we developed an educational program for hospital maternity divisions about how to help new parents of children born with disabilities. I always brought a child with Down Syndrome and his or her parent to these programs and the reaction was amazing. Doctors and nurses who only saw upset parents before now heard from these same parents about the challenges and very real joys of life with their child. Even better, these professionals were charmed by meeting the children themselves.

We found that changes in attitudes and information can change future outcomes for the better for children and their parents.

Conclusion

It is natural to feel shocked and overwhelmed when you are told either before or after birth that your baby has a condition. Panic and fear is not uncommon.

But it is at this vulnerable time that parents especially need the accurate information, resources and support that the Kennedy-Brownback law was designed to provide.

Unfortunately, we have groups like Planned Parenthood that demand legalized abortion at any time during pregnancy for any or no reason at all as a civil right. However, that must not stop us from continuing to strive for a compassionate society that protects every human life, promotes accurate information and fights discrimination at the same time.