Recently I corresponded with Madeline Nugent about the importance of her upcoming book, My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis. In this collection of stories and practical tips for parents, Nugent reaches out directly to parents who are experiencing a different kind of crisis pregnancy. She gently invites them to consider the experiences of those who have carried children with a serious diagnosis. Because parents typically find out about problems with baby mid-pregnancy, they are truly vulnerable to making rushed decisions. These are too often regrettable decisions.
To make matters worse, after a diagnosis, maternal-fetal offices freely give out books and pamphlets that assume parents will terminate. Nugent encouranges couples to slow down, to think, pray and talk with other parents. Her book is like a dose of soothing sanity, a pressure-free source of encouragement and inspiration to guide parents toward life-affirming choices.
And it couldn't be better-timed. As if there is not enough anti-life bias influencing parents to do the unthinkable, sources have told me of a book in the works from mothers who have made the "heartbreaking choice" to terminate after a prenatal diagnosis. Despite that fact that termination rates for some diagnoses approach 100% (anencephaly, for instance), we can be certain that many geneticists will exercise their professional "neutrality" and dutifully hand out another pro-termination resource.
But things may change soon! Senator Sam Brownback's Prenatally and Postnatally Diagnosed Conditions Awareness Act currently sits in committee, awaiting action. The Act holds professionals accountable for failing to provide accurate, up-to-date, balanced information to parents. In short, the Act, if passed, can help ensure that My Child, My Gift is handed out at least with the same regularity as its "heartbreaking choice" counterpart.
Nugent, a member of the Franciscan-based Confraternity of Penitents, mother of five, and author of several books, including Love-Ability: Becoming Lovable by Caring for Yourself and Others, and The Divine Office for Dodos: A Step by Step Guide to Praying the Liturgy of the Hours, writes from her home in Rhode Island. More about My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis is available at www.mychildmygift.com.
Rafie: You begin with this intriguing introduction: Because Joseph was diagnosed in utero with anencephaly, My Child, My Gift was written. Joseph was born on his due date and lived four days of love in his parents' arms. Can you share something more about Joseph and his relationship to you?
Nugent: Joseph is the grandson of JoAnn McOsker, the founder of the national prolife organization Catholics for Life. When JoAnn's daughter Maria was pregnant with her second child, she went for her routine ultrasound. The doctors then discovered that her unborn baby (little Joseph) had anencephaly. To help her decide what to do, her doctor gave Maria a book called, A Time to Decide, A Time to Heal by Molly Minnick, with about three pages devoted to carrying a baby to term and the rest of the 119 pages all about terminating a pregnancy. Maria showed the book to her mother JoAnn, saying, "Mom, I can't even read this."
JoAnn phoned me, told me the story I have just shared, and said, "Madeline, we have got to put out a book that has a positive message for these parents. Can you write something? Catholics for Life will pay for it to be published." It turns out that a publisher was interested in publishing My Child, My Gift, and so Catholics for Life never had to do so.
Rafie: Just as in Maria's case, it's the doctors, the maternal-fetal specialists and geneticists who are really there on the front-line with parents. How influential are their encounters with parents?
Nugent: Parents are extremely vulnerable to these professionals. First, most people see those with medical degrees as slightly lower in rank than God. Because most people know very little about medicine, they believe that the specialists and geneticists are absolutely accurate and totally unbiased in the information they present. This is incorrect. Specialists and geneticists routinely make errors, misdiagnoses, and offer incorrect treatments. Some of them encourage termination, manipulating the parents into thinking it is their choice when the information presented was so bleak that only the strongest parent could resist the pressure to terminate. Parents need to stop thinking of medical professionals as "god-like" and need to think about themselves, the parents, as the first advocates for their children.
Rafie: Of course, there are physicians who do the right thing and support families — do you feature any examples in your book of "doctors behaving nobly"?
Nugent: Yes. There are some examples of doctors who said, "Go home and think about how the baby is different" or "We will get you through this." But, unfortunately, the examples are minimal. I found that most doctors are not encouraging parents to continue their pregnancies with babies who have fatal or disabling conditions. At best, they will try to remain neutral and allow the parents to decide. This is not being neutral at all, however, because the prevailing culture encourages termination. When doctors take a neutral stand, they passively encourage termination as an option.
Rafie: Madeline, sometimes we can be accused of "sugar-coating" when we present the positive side of welcoming a child with special medical needs. Is this fair?
Nugent: It is possible that some people may "sugar-coat" their experiences, but I believe that this accusation generally comes from physicians and others who have seen children with disabilities or fatal conditions but who have never parented them. As a mother of a child with a disability, I am often told how "brave" we must have been to adopt her, what a "hard task" it must have been to raise her, and what a "commendable job" we have done in our parenting. All of these comments, meant to be positive, are based on the underlying assumption that raising a daughter with a disability would be so much more difficult than raising a child without a disability. Kay-Marie was the last of our five children. I can honestly say that her disability was no more than an annoyance.
Rafie: How can we make sure this book lands in the hands (and hearts) of those it can benefit?
Nugent: If each woman reading this article would simply call her Ob/Gyn and make him or her aware of the book or its promotion site, perhaps My Child, My Gift will be handed out instead of the pro-termination, A Time to Decide and a Time to Heal.
Rafie: Finally, how were you personally affected by the stories you read?
Nugent: The strength and faith of the parents involved strengthened my own faith. And I came to see even more clearly that we do not know the plans God has in store for us. What seems tragic to us is very often the source of God's greatest blessings. We have to allow Him to work in our lives because then all the good He wants for us will happen. Every life is created for a reason. We need to move forward in hope. In time we will understand.
