Recently Richard Dawkins created a stir with some thoughtless tweets about aborting people with Down Syndrome, and Live Action has a column about the motives of some who abort their babies with Down Syndrome. With respect to author Sarah Terzo, it is an untempered treatment of deep complexities not at all explicated in the article, nor even hinted at. In the interest of truth and justice for many post-abortive mothers, here is a deeper exploration. It comes by way of my own experiences as the father of a special needs child.
When Regina became pregnant with Joseph (our first) it was pure magic. This child we feared might never be conceived after four years of prayers and disappointments, our first baby, was on the way. Early on we were offered the AFP, which tests for fetal anomalies and has many false-positive results.
We refused.
Why chance a positive result which would require amniocentesis to confirm, especially when amniocentesis kills one in every two hundred babies on which it is performed? There was no way that we would abort our baby, no matter what. “Besides,” I added to our bewildered Ob, “If God has X number of handicapped babies He needs to send into the world, we’ll take one. Children with needs require more love, not less.”
I never really thought He would take me up on that little bit of bravado.
It just didn’t make sense to have tests, to eat our hearts out if there were some potential anomaly that couldn’t be fixed. (Fetal surgery was just getting going at the time.)
Freeze frame. That’s an incredibly vulnerable time in every way for a woman. Physically she is immunocompromised, and increasingly uncomfortable toward the end. There’s the exhaustion of the first and third trimesters. There’s all sorts of concerns. At precisely the moment that a woman needs all the support she can get, when standing by her means everything for the father, for family and friends, she is hit with a devastating diagnosis.
Joseph was turning five when after years of misdiagnoses he was finally correctly diagnosed by some of the best minds in the field:
Autism, moderately profound.
ADHD
Mixed Expressive/Receptive Language Disorder (half of all tests he didn’t respond enough to establish a basal score)
Speech equivalent of 2.1 years
IQ tests: half very low average, half borderline.
Static Encephalopathy.
Cerebellar Defect.
Sensory Integration Disorder.
Shattering doesn’t begin to describe the pitch blackness I found myself in. It was a blackness so black that I couldn’t even see my wife’s pain and bewilderment. The upshot of it all was “What happens to Joseph when we’re gone?”
For the first time in my life I knew not only fear, but panic. So, I can relate to the parents who get the news when their baby is still in utero, when they are in a far more vulnerable state than we were. They also have an additional burden that I didn’t. I had Joseph for nearly five years. We had developed a relationship: I fed, bathed, changed, played with him. I dressed him, and took him everywhere I went. These parents know their child less concretely, more abstractly.
No one suggested that Regina and I kill our child. But it isn’t that way with poor prenatal diagnoses. I’ve met scores of women who were beset by the medical geneticists and their Ob’s to abort the baby. Far too many have recounted how they were burdened with blame:
“What do you mean you want to keep it? Why would you make your baby suffer that way?”
Lovely. Were that not bad enough, such news often comes when women have only one or two weeks left before they can no longer have an abortion (Statutory regulation).
Worse still are the fathers who pressure the mothers to abort, threatening financial, emotional and physical abandonment. “You’ll raise that freak on your own!” What a betrayal of trust and love, of all those little promises whispered when making love and begetting the baby.
More tragic still is the pressure from family and friends, and all too often, there stands the frightened, unsupported and completely besieged mother at precisely her most vulnerable moment.
So much for respecting women, for love and fidelity, for choice, for patient autonomy, for informed consent: Especially informed consent.
Parents are frequently not told of the surgeries, the therapies (medical, occupational, physical, speech, educational) that are available. They aren’t told of the Early Intervention program, of the advances made by those with Down Syndrome, of how many are now attending and graduating from college.
In other words, they are deprived of hope.
Comments made when they show up at an abortion center need to be evaluated in that light. In psychology the comments quoted by Terzo can be a good example of the defense mechanism called, “Reaction Formation,” which is the tendency to express the opposite of what one is feeling and threatened by, but cannot face.
So, how do we proceed?
Three years ago when I was National Director of Medical Students for Life, I approached some like-minded folks and with them brought to fruition a medical conference I had long envisioned as a means of enlightening the medical community. So, on January 21, 2012 at Family Research Council headquarters in Washington, DC, we held the first conference on Poor Prenatal Diagnoses and Therapeutic Interventions. It was live-cast and recorded and the entire conference can be viewed here. There will be more such conferences in the near future.
The purpose of the conference was to enlighten not only the medical community, but the rest of society; to give hope to those whose fear begets some of the ugly quotes in the Terzo article.
Regina and I were blessed with many beautiful and wonderful people who came into our lives and helped teach Joseph, most especially Mr. Robert Marinello who is one of the finest and most gifted speech therapists in the field. He got Joseph communicating in very short order, and gave me back my son. In the eleven years since we received the shattering diagnoses, Joseph has come into his own. He is poised to become an Eagle Scout in October at the age of fifteen, scored in the 98th percentile on his end of year testing this year, and is an accomplished athlete and dancer.
It took years, several years, to relax and trust that all would be well, to realize:
That God’s definition of well is not my own.
That God’s plans and dreams for Joseph are quite different from what I had envisioned when Regina gave birth.
That God was right beside me all of those sleepless nights I sat in the rocking chair beside Joseph’s bed, contemplating his future.
That God has an army of healers who do as a matter of routine what required the laying on of hands by Jesus two thousand years ago.
That God will use our fear and turn it into sacrificial love’s engine.
That God will then use special parents as the evangelists of this Gospel of Love.
In retrospect, what most made for the experience of being shattered was the fear of a loveless world and what it would do to our son. But God is faithful and He has shown us through our son an army of people who offer love, and hope, and opportunity.
Joseph is in good company among his peers with his particular style of learning and being in the world. The many therapists and professionals with whom he has worked have brought him and his peers not only into the realm of functionality, but of competitiveness with peers who are neurotypical. The same may be said of those with Down Syndrome.
News reports of parents seeking abortions for their special needs babies rightly anger and disgust us, but they don’t accurately portray all who receive these diagnoses. They also don’t delve into that pitch blackness in which I found myself, and in which these parents find themselves. The difference between us?
In my heart I knew that God would be faithful and what I was despairing of most of all was my own sense of smallness and inadequacy regarding the task before me. It was God’s fidelity as my father that empowered me.
I don’t judge these people quoted by Terzo. I agonize for them in their helplessness and hopelessness.
Take some time and watch the entire conference linked here. Then share this good news far and wide.
For many, all they need is the light of truth to begin to embrace their babies, to embrace their parenthood.
Thank you for sharing such a deep heart felt post. Moved me deeply. I think that the problem with any problem for humans is summed up in the statement you made
“That God’s definition of well is not my own.” People simply don’t trust God.
When we choose to trust HIM and not all the other voices we find a place of contentment and joy that Paul spoke of in the bible.
You have found that place and I thank you for sharing it. I pray that people will soak in what you’ve said and find hope in Christ.
Thank you for this. As a mother of four – our youngest diagnosed with Autism last year – it is good to read your words of hope. God bless you and your family!
I’m glad you wrote this. But in point of fact, the quotes in the article you refer to were made not at the abortion clinic, but prior to the amniocentesis that might or might not detect an Downs. They came not as a reaction to a diagnosis at all, but were rather the parents’ way of expressing how they would feel about a down syndrome child before the fact. I think that may change your analysis a little.
Thanks, Sarah. It actually doesn’t change the analysis, because the comments were made after an AFP yielded a positive result, setting up the “need” for amniocentesis. Given the widespread abusiveness of so very, very many Ob’s and genetic counselors who set up these amnios, it actually reinforces my analysis. That’s not to say that there aren’t many parents who are just raging narcissists and cannot abide a child who does not reflect them in every way. We have bushels filled with that type. However, we have far more who are victims of the aggressive eugenics that has seized modern medicine, aggressive to the point of predation. It is about these I have written.
God Bless.
While I agree with what you’ve written, I do believe you paint too rosy a picture of what life can be for some of the families with disabled children. There may be a myriad of therapies available, but those therapies are not available in all areas of the United States.
For instance, I live in a semi-rural area of the Southwest in which SLP, OTs, and the like are in very short order (the nearest Children’s Hospital is 180 miles away). My son has a moderate articulation disorder. He only receives 25 minutes of Speech Therapy at school because there are so many children in need within the district and only a handful of therapists around. We’re fortunate to be able to afford private speech therapy for our son, but it costs $300 per month. Not everyone can afford these therapies and have to make due with sub-standard conditions.
I’m very much against abortion of disabled children, but the reality is many parents worry about the costs/availability of treating their children. This reality has caused my husband and I to be hesitant about trying for another child. We married in our 30s and have two children. I’m now a month shy of 40. We would like another baby, but I’m afraid of having a special needs child for the reasons I cited above.
Priscilla,
Thanks for taking the time to reply. If I may, I’d like to address your central concern. The real efficacy of therapy such as speech therapy comes into existence when the family uses those sessions (even if it’s just 30 min. per week) as the basis for reorienting their whole way of living at home. Therapy isn’t something you outsource. It’s something you import. You carry over what the therapist does and how it’s done and then you begin to improvise as the child grows. This needs to be the new paradigm in the age of shrinking budgets. It’s what we did.
At the root of it all is the central contention that I and many of my colleagues in the medical wing of the pro-life movement contend: If all we ever do is kill babies we’ll never learn to treat them.
Excellent reply. When did we start that idea of killing is better than letting someone live? I know Hitler used it religiously and we used to think he was an evil man but today many people act very much like him.
Thank you for this post! We had a child who was diagnosed with a fatal birth defect 6 days after birth. I ended up at Children’s Hospital in Washington DC in total shock with the parents of 40 other sick babies in her NICU.
We were one the only ones, besides the parents of preemies, who didn’t know we’d be here before her birth. I remember the other parents extending me sympathy about the shock–because we had a sweet, normal pregnancy and suddenly we living in the area’s highest level NICU. I was forced to deal with my baby’s diagnosis, while I was actually looking at her. She was mine. She had a name. She wasn’t just “a problem.” She was my daughter Teresa, who also happened to have this scary thing going on in her body.
My kid’s birth defect had a 97% cure rate with surgery. She got treated by the best surgeon from Georgetown Medical School. I remember getting the update after surgery and asking when we come back to the hospital again. He told me the golden words “We resolved it. She’s cured for life!”
It was only after I got home from the NICU that I found out that because my daughter’s relatively easily cured condition has a 40 % correlation with Down Syndrome and a 60% correlation with a heart defect–if we had found her small intestine trouble on a regular ultrasound her doctors would recommend aborting her. In fact the March of Dimes, the very organization that loved on us in the NICU, advocated fetal testing and abortion as “a cure” for my kid’s specific birth defect.
That was heartbreaking news to me. It’s not like our month long NICU experience was “fun”–but it was deep, spiritual and loving. At the end of it, we took home a healthy, healed baby girl. I can’t even tell you how many dozens of people we knew personally in the NICU came through super scary experiences with their babies. The medicine is out there. Most importantly, there are doctors and nurses who are incredibly loving and gentle with brand new sick babies. It’s such a dramatic pro-life switch to get to a pediatric floor that treasures all life, from an regular OB practice that is like ‘your baby sucks, throw her back!’
Thank you for sharing Teresa’s miracle with us, Abigail. The most beautiful words I’ve read in ages:
A long and blessedly happy life to Teresa, and may you see her children, and her children’s children! 🙂
Gerard, this may just be the finest piece you’ve ever written. As the mother of a daughter with spina bifida, I experienced the exact medical and societal pressures you detailed, from the attending pediatrician who suggested a few hours after her birth, “Next time get the test done and you won’t have to have another one like this” to the relative who said, “Maybe they’ll be lucky and she’ll die.”
By God’s grace (and I absolutely mean that) I clung to the belief “That God was right beside me” every day while I sat in the NICU holding my baby and contemplating her future, and that He loved my daughter even more than I did.
And Abigail Benjamin, your words are just as profound as Gerard’s. Your daughter Teresa is blessed with a wonderful mother indeed.
Agreeing with Shari Ann, I also liked this post, much more personal and meaningful than some others. It thrills me viscerally to hear about Joseph’s progress, because I met him in person, and liked him very much. However, if I were Adolph (not the one Juda referred to above, rather foolishly, but a kinder and gentler Adolph), or better yet, if I were Richard Dawkins, I wouldn’t want to see all trisomy 21 babies aborted, certainly not one being born to Regina Nadal. However, having cared for many, abandoned and miserable in a “home” (not really anywhere near a home), there are some that I would. However, I’m not Richard or Adolph. I’m me, I think, and I would say only that I see the black and white of it, but also the grey of it. The grey is we cannot know what fate will befall each Down’s child, but we do have some factors that can help us guess: the parents’ attitude, for one. Am I comfortable with the grey? Funny you should ask that. No. We can only pretend to be comfortable with it. But I see it anyway. No pun intended, but it’s part of the spectrum. And as long as we remain human, it always will be.
Pt-109, I like what you just said. Did an angel just get its wings, or did a certain hot place just freeze over?
Funny, I am about as pro-abortion as it’s possible for a person to me, and yet if prenatal testing had revealed Down Syndrome in one of my children, I would not have aborted for that, because I know what happy lives people with this condition can lead. I might have decided to end the pregnancies for other reasons, but not for that one alone. (My husband didn’t agree with me on this, so it surely would have caused a big conflict.)
The way I saw it was, I made a conscious decision to conceive a child (and fortunately, nature cooperated), and I was going to go through with it, unless 1) my life was seriously in danger, or 2) the baby had some condition that would interfere with its quality of life (an irreparable heart condition, anencephaly, etc.). I don’t claim to be a Regina Nadal, nor even close, but because I was a middle-class person with decent healthy insurance having a baby in the developed world, I believed I would have been in a position to offer a decent quality of life to a baby with Downs, or other physical conditions. Perhaps many parents don’t feel that way, which is why I would never judge someone who reached a different conclusion.
There are old women here in Japan who aborted babies in the years right after the war, after watching older children slowly starve to death. Talk about grey areas……
Sigh….I wish this comment system allowed us to go back and fix typos!
Thanks, Shari Ann and pt-109.
pt, I know what you mean when you talk of those who are warehoused and low functioning. Nonexistence can seem preferable to a life consigned beyond even the margins of society. Languishing in the brackish backwater. Yes, nonexistence is sweetly seductive.
But consider this. Nonexistence is a lie, a lie told every time. The baby exists, which is why it is the object of our consideration. You may recall, pt-109, the Willowbrook State School scandal exposed by a young Geraldo Rivera in an early 1970’s undercover expose. It spelled the end of the draconian warehouses for the developmentally disabled and ignited the modern Group Home movement, as well as generations of advances in therapeutics and special education. In 1983 the life expectancy of a person with Down Syndrome was 25 years. Today it is age 60. The only major development responsible for that change is that we decided to treat them as any other medical patient.
Yes, not all benefit from the advances, and yes, some remain profoundly retarded. But this is precisely where you and I as scientists are kept from derailing. These most profoundly delayed call forth in us every human instinct for compassion, and beg us to lavish upon them the best of who and what we are. Were scientists, pt. We suffered together through Columbia University’s pre-med program and then our doctorates. Who more than the least among us deserves the best from us, or needs it more? There is a waiting list of couples who specifically request a baby with Down Syndrome.
The love is already there. The world needs you and me standing for, pushing for better and better scientific advances and therapeutic interventions. We’ll never get there if we kill the very population in need of our skills. We can’t learn to treat dead patients. I know you have a large heart. The disappointments it experiences are a call to action, not despair.
Dr. N, This is one of those tricky conversations, because I agree with everything you said — every word. If I look a little in one direction, I see a world that we hopefully are evolving to, one in which people are more like you in how they think about other people, especially the weak. It is a world where nobody aborts and nobody gives less than 100% for kids, whose growth can be remarkable with science and love at their sides. If I look a little in the other direction, I see grounds for murder, and feel the impulse that other men feel who love their children. Being profoundly well read, you know why George shot Lenny in Steinbeck’s novel. Perhaps you would even know why I might in the last second, with great anguish, kill my own Down’s child as we were being forced through the one-way gates of Auschwitz. These are otherwise unthinkable acts on human beings. “The woods are lovely, dark and deep, but I have promises to keep, and miles to go before I sleep…” We do for our children what our reality is, and what our assessment of their reality is, realities that vary from individual to individual. Dr. Nadal, your views, your reality, your understanding, are things I hope we can all move closer to as time, and human wisdom, march forward.
Lisa Twaronite, you’re a decent person. Thanks for joining in the conversation. Dr. N’s got a good blog, and sometimes you help make it more interesting, like this time, without much in the way of obvious “host-poking.” Bravo!
pt-109,
I know it’s a beast of a conversation, and I appreciate what you have written. When George shot Lennie, he did so to prevent a far more cruel and painful death that Lennie faced at Curley’s hands for accidentally killing his wife. Lennie didn’t know his own strength. It’s interesting that you should evoke that particular vignette as exemplary. Indeed, people with Down Syndrome and others have never known the strength, the capability of those with Down’s. So it was an interesting follow-on comment when you said:
And the whole point of my post was to communicate that most parents receiving a prenatal diagnosis don’t have the essential knowledge to assess the reality of the resources available, the potential and strength of those with Down Syndrome. Without that information, there can be no such thing as informed consent, there can be no such reality as patient autonomy. All that exists is fear, panic, and opportunistic coercion.
The tragedy of George shooting Lenny was that the story was set in the great age of the Hobo, when tramps rode the rails between states, when communication was much more restricted, when men could get lost in the expanse of the continent. George waited too long and assessed his options too late. While George loved Lenny, I could never escape the feeling that he might have tired (compassion fatigue) of caring for Lenny. Why not use that gun to defend Lenny from being lynched? George had his limits. Parents of special needs children are called to sacrifices far less dramatic, but just as deep in other ways.
The most heartbreaking irony in all of this are the scores of thousands of therapists and special educators who have collectively spent into the hundreds of millions of dollars, if not over a billion, on bachelor, master, and doctoral degrees in the related therapies and special education. Most receive modest to substandard compensation. All of these people stand ready to lavish their time, and skills on these children being aborted by parents who flail about in the dark.
GMN: “And the whole point of my post was to communicate that most parents receiving a prenatal diagnosis don’t have the essential knowledge to assess the reality of the resources available, the potential and strength of those with Down Syndrome. Without that information, there can be no such thing as informed consent, there can be no such reality as patient autonomy. All that exists is fear, panic, and opportunistic coercion.”
pt-109: “I couldn’t agree more. This has been a very educational post and follow-up discussion for me, and hopefully for others as well.”
Thanks, pt-109. Most humans have their decent moments.
I’ll quit while I’m ahead, and say no more. For now!
When I read your post, I thought that the OBs who suggest abortion need to spend less hours in a dim room looking at ultrasound pictures and get out more. Maybe they need to mix and mingle with all sorts of therapists, parents, children, schoolteachers, other kinds of doctors, graduate students, professors, and make friends with people in all sorts of demographics. All sorts of people suffer and all sorts of people experience great joy. In fact a person can experience great suffering and happiness and contentment all in the same week, not to mention throughout the lifespan. Often there is a lot to learn and cope with when one receives a scary diagnosis.
Maybe they do.