We'd already gone through the shock of hearing that Cystic Fibrosis was in the family gene pool. (Jon's Dad casually mentioned having a nephew who died at age five during a Thanksgiving visit. I was five months pregnant with our first child and promptly burst into tears, convinced my fascination with an autobiography l read on the subject at age 8 was a foreshadowing of things to come. I was right, sort of. My husband and I are both carriers of the CF gene. His is the most severe form, mine is a mild form that is rarely active. My ob-gyn had done her homework. She said our babies risked a mild to moderate form of CF. The referral to OSU was a formality, we were told.)
So we started out the car trip, happy. We talked about asking for advice on how to tell our children they were at risk for having CF positive babies. We decided to spring for CF test when they got married. We told ourselves we could handle saying rosaries by the sickbeds of any future grandchildren. "Whistling in the dark" is the name for our conversation.
Then came the devastating news from the genetic counselor. "No, your baby has the 1/4 chance of having a fatal disease, not your grandchildren." Then to ease the burden on my stricken face, "Don't worry. This is the only baby who will have that risk. For all the other babies, we'll do an amino, if the fetus is CF positive, we'll take care of it. Sorry that we didn't catch this one until it was too late [the sixth month.]"
I was a brand new Catholic, and I hung so fiercely to the label that I'd just checked of on my religious preference form.
"I'm Catholic," I said. "I can't do an abortion." I repeated that same sentence for a mind-numbing amount of time. I watched my husband fall apart. I cried into fist after fist of tissues. I argued my way out of a same-day amino by saying "I don't want to worry about miscarriage on Christmas. Let me go home, now." I felt scared. I felt alone. There was all this intense medical pressure to do a test which would only tell us a basic hands up or hands down CF result a mere two weeks before my due date.
"I'm Catholic, I'm Catholic, I'm Catholic" I stuttered, until they let me go home.
I knew in their mind "Catholic" meant "crazy as a loon about medically necessary procedures." I didn't care. It got me out of that suffocating environment. Because the whole Catholic church has been solidly pro-life for all these centuries repeating the phrase "I can't because I'm Catholic" means that doctors will eventually realize that they single-handedly can't "reason" with you. Eventually, they will save their breath to cool their porridge.
Because I was Catholic, I had a chance to get out of that room without an amnio. Because my husband is an expert in patient advocacy, we found our way to the hospital library. The information we read gave us hope. The average lifespan of a CF patients is age 18, we read. “Well, at least that isn’t age five, we said.” [I’ve since discovered its currently up to age 36].
Jon and I left the hospital library. We were dazed and ended up missing our freeway entrance. After a few wrong turns we gave up and decided to eat lunch at a Bob Evens Restaurant. I cried again, this time into paper napkins instead of Kleenex.
Then, I grabbed his hand over mashed potatoes and a pot roast sandwich. "Even if it ends up just being us in the room at the nursing home. . . even if none of our children live to adulthood, it would be worth it. We're not raising kids to get something back from them. We won't be hoping for companionship in our old age, or for them to make us look good by graduating from college with lots of awards. We're just raising kids for themselves alone, for whatever life God has planned."
Those were the words that I shared with my husband. That was our "mashed potato pledge." This is where our unconditional love of our children began. I count that moment as one of the sweetest in my marriage.
It's taken me a long time (like 3 years) to forgive the genetic counselor we had at OSU. Now, I pray for her, for the ob who said women can’t have more than three c-sections, and for all the medical professionals caught up in the anti-life sentiments which currently plague a healing profession.
Our memories of that day are still fresh. When my husband's employer wanted to add the Association of Genetic Counselors as a client, my husband did his research. He looked at their policies and talked to our priest. Then he told his boss that he would have to quit his job if they demanded that he do any advertising work for this association because it conflicted with his beliefs as a Catholic. He said this even though I was six months pregnant with Maria, and our savings would have barely covered one month’s rent. (This is a Dad story I’ll proudly share with Alex some day.)
So far all three of my children have tested negative for CF. I worry about every baby from the first positive pregnancy test until the results of the newborn blood test heel-stick tests come back. According to a New York Times newspaper article, 90 % of all babies who are dignosed as positive for CF through an amnio in the United States are aborted.
I picked up a brochure on this subject from the US Conference of Catholic Bishops at my new parish today. The bishops stress that priests and pastors can help support family. Catholics have a right to know that "early induction of labor performed simply for the reason that the child has a lethal anomaly is direct abortion." They suggest that rather than saying, "only you know what is best for your family", Priests should share some of these statements:
“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 form 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."
Holy Innocents, protect all children from harm. Encourage our priests and laity to speak out strongly in favor of the dignity of human life.
The full text of "Peter's Story" by Mary Kellett is available here.