Helping Parents Who Receive a Difficult Prenatal Diagnosis
By Msgr. Charles Pope
I spent the afternoon today taking part in a “webinar” focused on providing support, Church teaching and information to families who receive a prenatal diagnosis that their child will be disabled in some way. Perhaps they are informed that the child will have Down Syndrome, or perhaps a birth defect that will lead either to early death, or to a lifetime of challenges.
The pressure on such families to abort is often enormous. They are told, “It is the right thing to do” and, “You should not make the child suffer.” Some are even made to feel they are doing something “unethical” by bringing forth such children. There are also time pressures placed on such parents. Doctors often want the decision to terminate, made quickly, within a matter of days.
A life not worth living?
There seems to be operative a notion on the part of many in our culture that there is such a thing as a life not worth living. We have stumbled upon the very unusual and tragically ironic concept that death is a form of therapy, that the “treatment” for disabled babies is to kill them. Of course death is not a treatment or a therapy, it cannot be considered a “solution” for the one who loses their life. Yet tragically this is often the advice that many parents with a poor prenatal diagnosis receive, the urgent pressure that they terminate the pregnancy now.
90 percent are lost. All this pressure goes a long way to explain that just over 90 percent of families with a poor pre-natal diagnosis abort. We in the Church cannot remain silent in the face of this. We must prophetically and compassionately reach out to families in such a crisis. Many of them are devastated by the news that their baby may have serious disabilities. Often they descend into shock and are overwhelmed by fear, conflicting feelings and even anger at God or others.
Sometimes the greatest gifts we can give them are time,information, and the framework of faith. Simply considering some of the following may help:
1. They do not have to rush, despite what they are told. Serious life-changing decisions should never have to be made in a 48- to 72- hour time period. Pressure should never be applied to families by medical personnel and the family should consider such pressure a grave injustice.
2. Prenatal diagnoses are not always right. We often think of medicine as an exact science. It is not. Data can be misinterpreted and premises can sometimes be wrong. Further, there is a difference between the result of a screening and an actual diagnosis. Screenings can point to potential problems and likelihoods, but are not an actual diagnosis of a problem. Further study is always needed if a screening indicates potential problems. Quite frequently, further tests after a screening reveal no problem at all.
3. Disabilities are not always as terrible a reality as we, in our “perfect-insistent” world, think. Many people with disabilities live very full lives and are a tremendous gift to their families, the Church and the world. Providing families with further information about disabilities and connecting them with families who have experience in these areas are essential to avoid the catastrophizing that sometimes sets in when an adverse prenatal diagnosis is given.
4. For those with faith it is essential to connect them with the most basic truths of our Christian faith. The cross is an absurdity to the world. But to those of the Christian faith, the cross brings life and blessings, even despite its pain. Where it not for our crosses, most of us could never be saved. Bringing forth a disabled child will not be easy but God never fails. He can make a way out of no way and do anything, but fail.
My own sister, Mary Anne, was mentally ill and she carried a cross. We too had a share in that cross. But Mary Anne brought blessings to our family as well. I don’t know if I’d be a priest today if it were not for her. I am sure I would not be as compassionate and I doubt I could be saved were it not for the important lessons she taught me. I know she brought out strength and mercy, not to mention humility, from all of us in the family. Her cross and ours brought grace, strength and many personal gifts to all of us.
Yes, the cross is painful, but it brings life as well. Easter Sunday is not possible without Good Friday. To the world the cross is absurdity but to us who believe it is salvation, it is life, it is our only real hope, it is our truest glory to carry it as Christ did.
5. Disability is not an all-or-nothing thing. Disability exists on a continuum. In some way all of us are disabled. Some of us have very serious weight problems, others diabetes, high blood pressure, heart problems, etc. Some of us are intellectually challenged in certain areas. Some of us struggle with anxiety or depression, addictions, or compulsions. Some experience losses in mobility through an accident or just due to age. All of us have abilities and disabilities. Some of our disabilities are more visible than others, some disabilities are more serious than others.
But in most cases we are able to adjust to what disables us and still live reasonably full lives. We may not be able to do all we would like, but life still has blessings for us. And even our weaknesses and disabilities can, and do, bring us blessings by helping to keep us humble. How much disability is too much? Can you really be the judge of that? Can you or I really decide for someone else that their life is not worth living?
6. Life is not usually what it seems. In this world we esteem things like wealth, ability, strength and power. But God is not all that impressed by these sorts of things. God has a special place for the poor and the humble. The Lord has said that many who are last in this life are going to be first in the next (cf Mat 19:30). There is a great reversal coming wherein the mighty are cast down and the lowly are raised up. In this world we may look upon those who suffer disability with a misplaced pity. But understand this: they are going to be the exalted ones in the kingdom of heaven.
As we accept the disabled and the needy into our midst we are accepting those who will be the royalty in heaven. We ought to learn to look up to them, beg their prayers and only hope that their coattails may also help us attain to some of the glory they will specially enjoy. They have a dignity that this world may refuse to see, but we who believe cannot fail to remember that the last are going to be the first. Life is not always what it seems.
What of those who aborted?
We as a Church cannot avoid our responsibility to prophetically declare the dignity and worth of the disabled. More than ever our world needs the Church’s testimony, for it is a startling statistic that 90 percent of parents abort in cases of a poor prenatal diagnosis.
Even as we prophetically witness to dignity of the disabled and the wrongness of abortion in these cases, we must also embrace those who have had abortions and now struggle. Many were pressured, afraid and felt alone. We offer this embrace through confession, and healing ministries that offer counseling, spiritual direction, support groups and prayer services. Even as the Church is prophetic in speaking against abortion, she must also reconcile those who have fallen under the weight of these heavy issues.
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Msgr. Charles Pope is the pastor of Holy Comforter-St. Cyprian, a vibrant parish community in Washington, D.C. A pastor since 2000, he also has led Bible studies in the U.S. Congress and at the White House in past years. You can read more of his articles on the blog of the Archdiocese of Washington at http://blog.adw.org.This article is reprinted with permission.
Learn More:
Elliot Institute Legislation
The Elliot Institute has called for legislation that would provide for legal liability for abortion businesses that fail to screen for coercion and other factors (including later abortion and abortion for negative fetal diagnosis) that are known to put women at risk for psychological problems after abortion. For more information on this legislation, visit here.
Articles and Information
Study: Abortion for Fetal Anomalies Increases Risk of Mental Health Problems
The Impact of Abortion After Prenatal Testing: What the Research Says
Prenatal Testing and Coerced Abortion
Psychiatric Disorders Linked to Abortion for Fetal Anomalies
Women Share Their Stories of Abortion After Prenatal Testing
My Sister Has Down Syndrome, Would Abortion Be Okay?
Link to this article.
Resources and Help
Dear Future Mom Video
A beautiful video in which young people with Down Syndrome reassure an expectant mother about what life with her child will be like. Go here to see more videos from families about how their lives have been blessed by their children with Down Syndrome.
5 Things Parents Need to Hear
Encouraging information for parents who have learned their child has Down Syndrome, before or after birth.
Defiant Birth: Women Who Resist Medical Eugenics
Book with stories from women who resisted abortion after being pressured to due to the mother’s disability or a poor prenatal diagnosis.
Be Not Afraid
An online outreach to parents who have received a poor or difficult prenatal diagnosis. Provides help parents as they seek as they seek to honor the life of their baby, no matter how frail or how brief.
Isaiah’s Promise
Offers support and information to families who have received a severe or fatal prenatal diagnosis. Includes links to other organizations with helpful information.
Anencephaly.net
Online resource with links to multiple resources, articles and information for families who have received a diagnosis of anencephaly.
Anencephaly.info
Offers personal stories, support and information for families who have received a diagnosis of anencephaly. Help for affected parents, caregivers and friends. (Site is available in multiple languages).
Prenatal Partners for Life
A group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. They offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. They have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they could not care for them.
Morning Light Ministry/Hope in Turmoil Book
Morning Light Ministry offers free support to parents who are carrying their baby with a difficult prenatal diagnosis to term. They offer support by telephone and email, prayer support and assistance in creating a birth plan for your child. They also offer a book, Hope in Turmoil: A Guide for Decision Making After Receiving a Difficult Prenatal Diagnosis Regarding Your Baby (free download or order a print version).
Pregnancy Help Page
Help After Abortion Page
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