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- New National Survey Shows Women’s Lack of Awareness On Dangers of the Birth Control Pill
Today, on the eve of their “50 Years of the Pill in America” symposium in Washington, Human Life International America released a new national poll surveying teenaged and adult women that reveals their widespread use yet complete lack of knowledge about the serious health risks “the Pill” and other hormonal… Read the rest
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- Happy and Healthy
It’s a harmless phrase really.
Many an expectant parent has said it: “We’re happy as long as he’s happy and healthy.” Well intentioned and true, no doubt. Who doesn’t want their child to be happy and healthy? Pregnant women forgo champagne toasts on New Year’s Eve, take prenatal vitamins with DHA and folic acid and make countless sacrifices — all for the health of their child.
But, what if the child to be born is not perfectly healthy? How does a parent respond if the prenatal diagnosis indicates that the child has a birth defect or genetic anomaly such as Down syndrome?
Recently, while waiting with my wife for an ultrasound, I had occasion to think about such questions. In the room next door we heard the nurse call an expectant mother after she had undergone prenatal testing. The nurse reported, “No, no, we have great news for you. Everything looks good. No Down syndrome, no Trisomy, so you don’t need to worry — no need to come in, you can just keep on doing what you are doing.”
I could sense the anxiety and relief on the other side of the phone. It was clear that the woman would have been told to come in immediately if the nurse had different news to share. I could not help but wonder how often that phone call is made and how often the nurse says, “I’m sorry but I have bad news …”
When a woman receives a poor prenatal diagnosis she is likely to be crestfallen and confused, especially if she has little support. The news that a child has a disability is presented and received as an urgent matter that must be “fixed” immediately. As one mother of a disabled child wrote at BeNotAfraid.Net, “Fear is an emotion which can overwhelm a woman who has welcomed her pregnancy only to be told that something is terribly wrong. There is little information, if any, readily available to help the distraught and confused mother-to-be who wants to flee from her situation.”
Rick Santorum with his daughter Bella.
What follows too often leads to a tragic decision. There is a tendency to distance oneself from that disabled child. “Options” are now considered and “termination” typically encouraged.
Sadly, Down syndrome equates to a death sentence as 90 percent of children prenatally diagnosed with the genetic disorder are aborted. Abortion is the greatest threat to persons with disabilities.
This is disheartening, but it need not be this way. Medical practitioners should approach their patients with compassion, tender love and genuine support. They can find resolve in the Church’s teaching that one with mental or physical disabilities, no matter how severe, must be treated as a unique person of incomparable worth, with the same right to life and to health care as anyone else. Every person is made in the image and likeness of God, possesses an intrinsic dignity and is precious in God’s sight.
But, teaching alone is not enough — the Christian community is called to actively support parents who face a negative prenatal diagnosis. For example, Be Not Afraid (BNA) is a unique ministry that provides a community of hope and encouragement for these parents. Making the choice for life is difficult and raising children with disabilities brings a unique set of challenges. BNA’s ministry is a tremendous resource, especially in its publication of testimonies by those who received a poor prenatal diagnosis and chose life, as well as through the numerous means of support offered to parents. When offered supportive care and encouragement following a poor prenatal diagnosis, parents come to understand the blessing of accepting their child unconditionally.
All parents want their children to be happy and healthy. But an aborted child is deprived by his parents of both happiness and health in this life. The aborted child is deprived of the opportunity to ever experience love. Presidential candidate Rick Santorum recently said of his son Gabriel, who survived only two hours after birth, “For two hours he lived a life that knew only love.”
A child who is diagnosed before birth with a disability may have serious health problems, but if given the chance to live, she can experience great love and joy.
This article also appeared in the Catholic Herald.
Arland K. Nichols is the National Director of HLI America. He writes for the Truth and Charity Forum.
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- A Christmas Baby
By Tracy Winsor
As Christmas approached this year, I was waiting for a baby. Not my own child, but one that belonged to me by way of a supportive relationship I have with her mother. We are not sisters or old friends, but rather new friends brought together, surely by an opportunity arranged by God.
You see, I had been invited to an interview on Catholic Satellite radio to talk about my work as co-founder of Be Not Afraid. The topic was poor prenatal diagnosis. The mother had been listening and immediately called in to share the details of her own developing story. Her precious baby girl had a brain anomaly likely pointing to a serious genetic condition often characterized as “incompatible with life.”
The program host asked if I had any words of encouragement to offer the mother. I felt enormously put on the spot, but recall falling into a natural and all-too-familiar conversation with her, “I’m so sorry that you have received such difficult news surrounding your baby girl.” I acknowledged her grief and shock – after all, no one goes into the prenatal testing process expecting their baby will be anything but healthy.
I then assured her that the worst day (the diagnosis day) was behind her, and that with good support she would find this pregnancy and this baby to be a blessing. “And does she have a name?” I asked.
“Yes,” Mom answered, “Corrine Catherine.”
And so, from that moment in August, Corrine was destined to become my Christmas baby. As it turned out, after keeping vigil with her mother via numerous phone calls and emails over several months, and an all-too-brief in person meeting in October, Corrine Catherine arrived the week of Christmas, sheltered in the quiet embrace of her parents, three older siblings, and extended family. She lived less than two hours, but changed her family forever.
I think it is safe to say that no family touched by prenatal diagnosis remains unchanged by the experience. Though most parents do ultimately choose to abort with the news of a medical or intellectual disability, there is every indication that ending the story at the worst possible time, in the immediacy of the diagnosis, presents real risk emotionally. The truth that abortion doesn’t offer a shortcut through grief is a reality seldom shared with parents considering abortion.
Nor are parents generally aware of the extent to which abortion has become part of routine obstetric care when it is determined that a baby has a disability. Results of an American College of Obstetricians and Gynecologists (ACOG) survey reported that ninety percent of the doctors responding considered abortion because of fatal fetal anomaly a justifiable treatment option, and 63% considered abortion a justifiable treatment option because of a non-fatal anomaly. Using a simple semantic slight of hand abortion becomes a treatment option, and medical professionals effectively disengage from the baby with a prenatal diagnosis, and signal that it is reasonable for the parents to do the same. As a result abortion is often presented as the only option to parents who have already bonded with, loved, and named their baby.
Research, however, suggests that many parents are in fact looking for some other option. Most will choose to continue their pregnancy if offered a program of comprehensive support. Parents want something better than abortion. They want someone to affirm the dignity of their child and to accompany them on the lonely and unfamiliar path from the diagnosis to the birth.
Having supported a good many families in the experience of carrying to term and recognizing that there are many reasons for this trend toward abortion following a prenatal diagnosis, I think it also likely that medical providers, just like friends and family, co-workers and communities of faith (all the people who should support parents) find it difficult to be supportive because they are afraid.
Corrine Catherine in her frailty says something to all of us about what it means to be vulnerable. Professionals, friends and family around parents carrying to term are also often struggling to find their way, worried about encountering disability and death. Just as no family is left unchanged by prenatal diagnosis, no person is left unchanged at one of these births. Embracing the brokenness of Corrine Catherine, despite the anguish of being unable to help her survive, teaches us to accept the heart-breaking limitations of life. Ultimately true love involves giving these precious children the look of love they deserve and providing a safe space where the least can be welcomed no matter the cost.
Parents experiencing a poor prenatal diagnosis and those carrying to term would be better served if there was more support for welcoming every life as a gift. For parents and those blessed to know them, the experience of loving in spite of a diagnosis is grace-filled and transformative. One need only read the obituary of Corrine Catherine to see the beauty of a life too brief:
Corrine Catherine was a blessing from the moment her parents knew she existed. When she received a diagnosis in the womb that was “incompatible with life” it did not stop her family from loving her or valuing her place in our lives. In sharing their journey with family and friends, Corrine opened people’s eyes to the beauty of life…Without uttering a word she has communicated the meaning of unconditional love, directed people closer to their faith and explained the redemptive power of suffering. In only an hour and a half, Corrine Catherine shared her special grace with all of her family giving each special moments and memories that will always be treasured. She received a sacred birthday party while being passed around in loving arms. After one final embrace by her mother, Corrine Catherine peacefully fell asleep for her final rest…Her parents and family look forward to being united with her again in our heavenly home.
Tracy Winsor is a contributing writer of HLI America, an educational initiative of Human Life International. She is co-founder of Be Not Afraid, an apostolate dedicated to supporting those who receive a poor prenatal diagnosis. She writes for HLI America’s Truth and Charity Forum.
- Down Syndrome: Toward More Successful Advocacy
By Monica Rafie and Tracy WinsorAs word spread of a new non-invasive, highly accurate prenatal test for Down syndrome, MaterniT21, the headlines could hardly have been more sensational: The End of Down Syndrome! Will We Cull Those with Down Syndrome? Are Kids with Down Syndrome on the Road to Extinction?
This mainstream response seems to suggest a terrible acknowledgment of what happens to babies diagnosed prenatally with Down syndrome. We have been “ending Down syndrome” for years, targeting atypical unborn children as we journey down a road that ensures a decreasing Down syndrome birth rate.
Just last week, a Time magazine article reported statistics pulled from a 2009 edition of the Archives of Disease in Childhood. As a result of more sophisticated prenatal screening, and with nine out of ten babies aborted following the prenatal diagnosis of Down syndrome, the birth rate for these children has been dropping for decades, decreasing by 15% between 1989 and 2005. This is particularly shocking as the impact of increasing maternal age during the same period should have resulted in a 24% increase in the Down syndrome birth rate.
What makes MaterniT21 (and all the new non-invasive prenatal tests based upon maternal plasma DNA) different and foreseeably catastrophic is that it will draw in a larger percentage of pregnant women. Those who reject invasive testing because of associated risks are likely to consent to a non-invasive test. Advocates for those with Down syndrome have braced for just that reality, predicting that the Down syndrome birth rate (roughly 1 in 700 now) will drop sharply once non-invasive tests such as MaterniT21 are more widely available.
With an abortion rate that has consistently been around 90%, shouldn’t we also be asking ourselves why our best efforts at advocacy for those prenatally diagnosed with Down syndrome have failed? And the related, and more important question, how can we improve our advocacy efforts?
Persons with Down syndrome and their families are blessed to have strong communities of support, both locally, and nationally, through such organizations as the National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS) and their local affiliates. These organizations have worked very hard for their constituents to gain access to education, employment, and healthcare opportunities as well as representation among those granted federal funds for medical research. They are to be commended for successful advocacy in these areas.
Over the years, NDSC and NDSS have offered multi-pronged, intelligent, and inspired efforts surrounding the issue of prenatal diagnosis. Both organizations have worked to improve the public profile of persons with Down syndrome using traditional and social media. They have addressed the discriminatory practice of targeted prenatal testing, produced positive, accurate, and updated information for parents experiencing a prenatal diagnosis of Down syndrome, disseminated materials aimed at improving the sensitivity and response of doctors, genetic counselors and other medical professionals. They have even organized local in-person outreach initiatives to offer peer support to parents at the time of diagnosis. None of these efforts, however, have been successful in bringing society at large to a fundamental shift, or tipping point, whereby babies diagnosed prenatally with Down syndrome are more likely to be carried to term and welcomed at birth by their parents.
The primary threat to the lives of persons with Down syndrome is no longer prenatal testing and diagnosis; nor is it ignorance, outdated information, lack of peer and professional support, nor even insensitive communication at the time of diagnosis. The primary threat to the lives of persons with Down syndrome is abortion. Yet, the major Down syndrome organizations are often unwilling to face that issue head on.
In 2008, NDSS and NDSC met with the American College of Obstetricians and Gynecologists, American College of Medical Genetics, and National Society of Genetic Counselors, and in 2009 released a jointly-written document titled, “Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives.” The document addresses a handful of “misconceptions” about the organizations and their practices. The collaborative statement acquitted medical professionals of any “eugenic” motives surrounding the use of prenatal screening and testing, and affirmed that genetic counselors do not engage in directive counseling. Of all the possible misconceptions to present, the single one brought forth by NDSC and NDSS is to dismiss any idea that they are “pro-life” organizations.
Dr. Brian Skotko, a Harvard educated Pediatric MD, Certified Geneticist, and specialist in Down Syndrome at Children’s Hospital Boston, Board Member of NDSS and NDSC, author of numerous articles and oft-cited research about families of persons with Down syndrome, most recently wrote about the expected effect of non-invasive prenatal diagnosis in a USA Today column. With a statement that perfectly echoes the positions of the national Down syndrome organizations, Skotko clearly indicates that Down syndrome advocacy ends where expectant parents’ decision-making begins: “I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision.”
Skotko continues, “But the decision no longer needs to be made in a vacuum, nor should it be made with lingering misperceptions that are still whispered in our society.” With an abortion rate close to 25% for all babies nationwide, and in some areas, as high as 46%, perhaps it is worth considering that it may not be lingering misconceptions that dispose parents toward a decision to abort after diagnosis. Perhaps instead, the abortion rate for Down syndrome is the natural consequence of a diseased culture, influenced by 40 years of abortion on demand. Perhaps most abort simply because they can.
There is a dawning sense that the problem is much more complex than lingering misconceptions. Advocate, attorney, and father, Mark Leach, in The Prenatal Testing Sham argues that Down syndrome advocacy focused on informing expectant parents with accurate and up-to-date resources about raising a child with Down syndrome is at this point the only card left to play: “Absent some fundamental societal change, these offsetting resources are really the only chance we have to turn the tide of decisions following a prenatal diagnosis.” Leach may be correct in his argument, but there is little evidence to support the hope that these resources will to any significant degree affect the numbers of parents who would otherwise abort.
Renate Lindeman, President of the Nova Scotia Down Syndrome Society, and mother of two children with Down syndrome, in anticipation of the imminent release of non-invasive prenatal tests, writes in the Canadian Medical Association Journal article,“Take Down Syndrome Out of the Abortion Debate”: “The best way to create a society that embraces (genetic and other) differences is to educate and engage the public and to support individual choices, whatever they are.” There has been no shortage of support for individual choices for 40 years. Why then are we still discussing “the best way to create a society that embraces difference”?
If the future plays out as has the past, advocacy for the child with Down syndrome in the womb will, in fact, be the only card left to play. What’s missing in the otherwise comprehensive approach of the NDSC and the NDSS is the simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome. If the strongest, best advocacy refrains from articulating that even a fully-informed decision to abort a baby diagnosed with Down syndrome is a poor one, then who will?
If it is our goal to discover the best way to create a society that embraces (genetic and other) differences, can we even begin such an endeavor when we accept the idea that the unborn baby is so other, so different from us that they are not worthy of protection? Authentic and effective Down syndrome advocacy must begin by embracing and advocating specifically for the baby with Down syndrome in the womb. Until the Down syndrome advocacy organizations recognize this truth, the recurring headlines will continue to read, “The End of Down Syndrome!”
A blueprint for better disability advocacy can be discovered in the Pastoral Statement of U.S. Catholic Bishops on People with Disabilities. Its vision is rooted in justice and is hopeful that change can be achieved, with no hint of resignation to the failure of individuals or the challenge of “contemporary circumstances”:
We look to the future with what we feel is a realistic optimism. The Church has a tradition of ministry to people with disabilities, and this tradition will fuel the stronger, more broadly based efforts called for by contemporary circumstances. We also have faith that our quest for justice, increasingly enlisted on the side of individuals with disabilities, will work powerfully in their behalf. No one would deny that every man, woman and child has the right to develop his or her potential to the fullest. With God’s help and our own determination, the day will come when that right is realized in the lives of all people with disabilities.
Monica Rafie and Tracy Winsor are founding partners in the work of Be Not Afraid Ministry, an outreach to parents grappling with prenatal diagnosis. Monica and Tracy are Contributing Writers for HLI America, an educational initiative of Human Life International. Their recent articles may be found at HLI America’s Truth and Charity Forum.
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- In Thanksgiving for Life
By Brian Barras, DDS
With Thanksgiving just behind us and Christmas fast approaching, it is a great opportunity to reflect upon and be truly thankful for all life. As a resident in pediatric dentistry, I have been blessed to serve children with various special medical needs. My colleagues and I have a unique practice – we treat the dental needs of children who have cancer, severe heart conditions or other debilitating health challenges.
One of my recent patients was Jacob. He could not speak, had slight vision out of one eye and had hearing difficulties. He leaned to his left side markedly, his hands and arms looked somewhat distorted and he had a constant drool. At the beginning of our appointment, I crouched down, looked the ten-year-old in the eye to introduce myself and asked how his day was going. His mom quickly informed me that because of his medical condition, Jacob could not understand me that well and could not verbally respond.
It helps to have tips from parents on what to expect in the way of responses; but whether or not the child can understand or see me, he deserves to be treated the same as any other person. In fact, such conditions move me to talk to these patients more or touch their hand or shoulder more often, because I know that the world may treat them differently. There is sometimes a tendency to talk around these children as if they were not in the room. We might be afraid to reach out to them because we rarely see up close how fragile life can be for those with severe disabilities.
Jacob’s mom shared with me that his favorite team was the Dallas Cowboys. I was moved with joy when Jacob smiled as I talked about football. Though he could not speak, he communicated with a smile, which meant everything to me by showing that Jacob does understand his surroundings. The appointment went well, and I considered it a success because I made a connection with Jacob.
“But to all who received him, who believed in his name, he gave power to become children of God; who were born, not of blood, nor of the will of the flesh, nor of the will of man, but of God.” (John 1:12-13)
We are reminded by Saint John that we are all children of God. Whether a person is 3 months old in the womb with a cleft palate, 10 years old with Down’s syndrome or 99 years old with Parkinson’s disease, we are all called to respect the dignity of each and every person. As a father of three children, I thank God for the health of my own children, and I pray for the well-being of the families I work with each day. I can only imagine how difficult it must be in Jacob’s case for his mom to feed him, pack up his wheelchair for each car ride, or even to brush his teeth. For Jacob and his family, even the routine events in life can be extremely difficult. It moves me with both compassion and admiration for each of these parents and other caregivers. I have noticed that the parents of children with special medical needs are overwhelmingly some of the most caring, loving and patient people I have ever met. That is something I try to emulate in my own house as I strive to be a loving husband and father.
I hope that during this season of Advent, and in the coming celebration of Christmas, we can truly thank God for His presence in our lives, and that may we have a renewed sense of love and respect for all human life. To be alive is simply a miracle in itself.
Brian Barras, DDS, is a husband, father and pediatric dental resident in Dallas, Texas.
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- On Life Choices, and the Blessings that Follow
By Christopher Casey
Growing up in a large Cajun/Irish family in southeastern Louisiana, I always imagined my future self as a family man. That future became uncertain, however, when I was diagnosed with Stargardt’s macular degeneration as a teenager. By my 17th birthday, I was already past the medical and legal threshold of blindness, and, to make matters worse, Stargardt’s is usually hereditary.
By my entrance into adulthood, the odds were definitely stacked against my life plans. Inability to make eye contact and inability to drive a car are not assets in the dating world. Doctors were advising me to get genetic counseling, which sounded like a suggestion that I not have children. And how could I support a family? Statistics indicate that 70 percent of working-age blind people (legally and totally blind) do not have a job, and the fortunate minority face disparate wages.I won’t tell you that I had a grain of faith or hope, but I chose to act as if I did, and maybe that is what counts, because I have been blessed.
Earlier this year, my wife Jan and I welcomed our ninth child. I have a steady job as an attorney, and Jan home-schools the children.
I met Jan through family. It seemed “meant to be” from the beginning. I don’t know how Jan looked beyond my disability and the related potential for difficulties in family life, but she did. She was the answer to fervent prayers.
While Jan seemed a gratuitous blessing, the ability to support a family would require tremendous work and persistence on my part.
I knew that I would need impressive academic qualifications to compete for jobs with “normal” people. I studied accounting in college; which is difficult when you can’t see the board. I tried a few times to get assistance from professors, but that usually didn’t work. Most thought I was exaggerating and, to the extent I managed to convince them, that I did not belong there.
To make a long and painful story short, I learned to teach myself and did well in college. I won a scholarship to law school and graduated with honors.
If college seemed like a 2,000 foot vertical cliff, the employment world was a 20,000 foot mountain waiting at the top of that cliff. Right after landing my first “real” attorney job with a local firm, I was asked to leave or accept demotion to research assistant at half salary. They had not realized that I was disabled, and, while there was no question of my knowledge, skills, or ability, they were not going to present a visually impaired associate to their clients.
It seemed to me that job stability would be more possible in a large organization that at least paid lip service to equal opportunity. After many unsuccessful applications for attorney positions with large private and government organizations, I finally got hired—as a customer service/teleservice representative.
I’ve remained employed with the same organization for 17 years, and my work has always been praised. The only problem seems to arise when I suggest that I should be given the same opportunities as other people. The teleservice managers stopped speaking to me when they found out I wanted an attorney position, and, after I got an attorney position, I went 15 years without promotion.
The great struggle in my home life is to keep indignation in its proper place. For many years, I was very passive about equal opportunity because I was so thankful to have a job—any job. My children have given me a reason to struggle for equal opportunity, though. Not only have I come to believe that they deserve the full fruits of my labors, but it distresses me to think they will face similar discrimination if they inherit Stargardt’s and I do nothing to change the environment.
Enduring and battling discrimination can be angering, frustrating, and exhausting. My great struggle is to keep it in its place—to fight the good fight and appreciate my blessings at the end of the day. To the extent that I let indignation affect my health, my mood, or my attention, I am not helping my family.
While a work in progress, my home life is one of happiness in the true sense of the word—happiness in being given the opportunity to work, to raise a family, and to participate in God’s plan of life and love.
We are fairly typical, I think, for a large home-schooling family. We strive for monastic-style order at the brink of anarchy every day. My disability adds a twist that could be seen as humorous by an outside observer and which no doubt will seem the same to us if we are blessed with the years to look back. As an example, when I am compelled to say something sternly like, “Margaret, how many times have I told you not to climb on the kitchen counter?”, I often get an answer like, “I’m not Margaret, Dad. I’m Madeleine.” My complaint loses some steam with my retort, “well, how many times have I told you not to climb?”
When we dare to go out in public as a group, we usually get two kinds of comments. Older people tell us they had a large family and how good it is to see one. To younger people, we’re more of an oddity. Sometimes they ask how many children we want. When I respond that we want two, my intent is humor with truth. I’ve come to realize that true happiness has little relation to doing what one wants.
Looking back on my life so far, I attribute my “successes” to the choices I’ve made with Jan in favor of life—the decision not to avoid children, the decision not to try to engineer or select genetically perfect children, and the decision to accept as many as God should will. So it was not good news to me when I learned that trials are underway for embryonic stem cell (ESC) treatment of Stargardt’s.
It would not surprise me if embryonic cell treatment turns out to be less than fully successful for Stargardt’s since modern taxpayer-funded science appears to be more motivated by desire to push the moral envelope than serving life. To date, decades of ESC research have yet to yield a single therapeutic cure, while stem cell research utilizing donated stem cells has already yielded dozens, and it seems that more are being announced every month.
But even if it turns out to offer a quick, full, and permanent cure, I’ll have to pass. Of course I would like to see normally—to toss a baseball with my sons, to see my daughters sing on stage—but I could never take advantage of ESC treatment. Jan and I have loved and worried about our own children since they were embryos, and we’ve even mourned the loss of one.
The very thought of creating or even destroying human beings for research purposes is horrible to us; and given the distance we have traveled as a family, we feel like we owe it to families discerning such treatment to know that there are choices. And the choice for life may be difficult in some cases, but it is always the best in the long run.
Christopher Casey is a guest writer for HLI America’s Truth and Charity Forum. This article is one of a series on HLI America’s Truth and Charity Forum about families who choose life in the midst of challenges to do so, and who find blessings and hope in the challenge. To submit a testimony, contact HLI America at hlia@hli.org.
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