PETER’S STORY:
DISCOVERING HOPE AND LOVE AFTER AN ADVERSE PRENATAL DIAGNOSIS (Pamphlet Version)
Mary Kellett
“You need to have amniocentesis. These markers
indicate there could be a chromosomal disorder … one that’s incompatible with
life. We need to find out for sure, and soon, so you have more choices.”
These were the words of the specialist at my
nineteen-week ultrasound.
“Do you mean abortion?” I asked. “We’d never
consider that. As for amnio, isn’t there a risk of miscarriage?”
“Yes, there’s a small risk,” the doctor conceded.
“But I highly recommend it, so you know what you’re dealing with. These markers
indicate trisomy 18. If the baby makes it to birth, it won’t survive beyond two
weeks.”
“Well, we won’t take the chance of hurting the
baby. We’ll love this little boy no matter what he has,” I said through tears.
So began the journey with our son, whom we named
Peter. Born at 34 weeks by emergency caesarean section, Peter was immediately
baptized by the hospital chaplain and confirmed two days later.
After we learned that Peter had full trisomy 18,
some recommended that we wrap him in a blanket and let him die. They said he’d
never have any “quality of life” or be able to contribute to society. He’d never
recognize us or interact with us. But Peter is now a giggling, smiling 2 1/2-
year-old who, though physically limited, brings joy to his family every day.
In the year after Peter’s birth, I thought often
of the mothers and dads who receive adverse prenatal diagnoses, followed by grim
descriptions of the genetic condition and assessments of the baby’s prospects
that are inaccurate, incomplete and even outright lies. Overwhelmed with sorrow
over their baby’s health problems, fearing that he may suffer, and given only
negative information about his life prospects, it is no wonder so many parents
feel pressured to abort their child. I asked God how I could encourage these
parents to make a life-affirming choice, one that would bring them peace, joy
and more love than they’d ever thought possible. His answer was for me to start
a support group for these parents called Prenatal Partners for Life.
Prenatal Partners for Life matches families
who’ve recently received an adverse prenatal diagnosis with families who’ve
given birth to a child with a similar condition. The experienced parents offer
accurate information, support and encouragement – through e-mails, phone calls,
letters or personal visits – for as long as the other couple needs help.
Many parents who contact us for information and
support describe the pressure exerted on them to “induce labor early” (i.e.,
abort their baby) after they received an adverse diagnosis. These parents are
sometimes made to feel guilty for wanting to carry their baby to term and to
seek treatment for him after birth. With a false sense of compassion, abortion
is sometimes urged on them as a moral obligation and the most loving choice for
a child who may have special needs. Very often, medical personnel discuss only
the negative aspects of having a child with disabilities; no hope or resources
are offered. Frightened and vulnerable parents, given no offer of support, may
make the tragic, life-altering decision to abort, and then live the rest of
their lives with questions and regret.
How Priests and Pastors
Can Support Families
God has given to priests and pastors the gift to
touch people’s lives in ways the rest of us cannot. They stand as a moral
compass, giving direction, love and compassion to those in need. Priests and
pastors play a crucial role in ministering to a family facing an adverse
diagnosis. Loving, compassionate, life-affirming support is what parents need
most at such a time. In light of pressure from many in the medical community to
abort babies with adverse conditions, it is all the more critical that pastors
and priests stand strong in the defense of life. Sadly, there is sometimes a
misguided sense of compassion, a desire to avoid “judging” the decision of
parents who have been told that their child’s life may bring hardship and
suffering and that the only solution is an abortion.
From a Catholic viewpoint, early induction of
labor performed simply for the reason that the child has a lethal anomaly is
direct abortion. Catholic parents have a right to know this. In addition,
parents have shared with us many statements by priests and pastors which they
found tremendously helpful in deciding to follow God’s will for their child’s
life. We offer these suggestions for anyone whose advice is sought at such a
difficult time.
• Every life is created by God and has a purpose.
• God has chosen you to be the mother of this
special child.
• God will give you every grace you need.
• Name your baby, talk to your baby, and love
your baby like any mother would.
• God hears your pain. He loves you and calls you, and all of his children, to
embrace the sanctity of human life from conception to natural death. He will
never leave your side
• No matter how long your baby lives, he will be
your child for all eternity.
• Create wonderful memories of this special time
while he is still alive and protected in your womb.
• Remember that God can and does perform
miracles. Don’t be afraid to ask, and don’t be afraid to hope.
• These special babies bring with them many
spiritual gifts and graces.
Here are some suggestions on what not to say
because these statements could lead to confusion and perhaps a decision to end
the child’s life:
• Only you know what is best for you and your
family.
• This is between you and God.
• What do you think is the right thing to do?
• This is a complicated matter.
• Follow your own conscience.
• Listen to the doctors and do what you think
your heart tells you to do.
• If your choice is made with love, it can’t be
wrong.
• In this case, it is okay to say good-bye early.
In our journey with Peter, my family was blessed
by the support of a faithful pastor and associate pastors, caring religious, our
extended family and many wonderful families from our parish. Their love and
support still sustain us. They are a living sign of Christ’s love, and we are
incredibly grateful.
Above all, we are grateful for Peter, whom we
call our “little teacher.” Even though he may never speak a word, he has taught
us many important lessons about love, sacrifice, compassion, patience, hope and
faith. He has transformed the way we look at life and has broadened our view on
the deeper meaning of the sacredness of all human life. He is a sweet, happy
little boy who knows and loves his family.
There is a place in the world for children with
special needs. We all are differently-abled, with flaws and gifts. These
children are teachers of our souls, and society desperately needs the lessons
and blessings they bring.
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Mary
Kellett is the Founder and Director of Prenatal Partners for Life.
The
full-length version of this article is posted at
http://www.usccb.org/prolife/programs/rlp/kellett.pdf.
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