I heard the poet Claribel Alegria speak at The Resilience of the Human Spirit Conference in 2006. She said that everything we do is political. During my pregnancy with Mary Rose I recalled her words often. Choosing to carry my daughter to term after testing revealed that she had trisomy 18 disturbed people and my pregnant body became a part of public discourse. Not too many people know that their baby will die while pregnant, and though I am pro-choice politically, I am also a private person who still does not understand why people freely gave me advice on two decisions that most have no experience making: abortion and neonatal life support.
A few Christian friends suggested abortion, and this surprised me. Did it surprise me because they were talking and posting on Facebook about “The Lord?” or was it because I thought that my decision to carry my baby was private? I would never tell my very closest friends what to do with a pregnancy. What made it okay for acquaintances to tell me what to do with my pregnancy? Or for friends to advise my mother after liturgy that abortion was the best choice for me?
It was appropriate for the doctors and genetic counselor to offer me the choice of abortion. When I said no, that was it, probably because I live in the south and Christianity is the mainstream culture here. I know other mothers are pressured into aborting their babies and have a hard time finding doctors who will work with them to carry their pregnancies to term. I know that some parents of trisomy 18 babies can’t find doctors to treat their children because they are deemed “incompatible with life.” It seems that no matter what we do there are challenges. We have to be our own advocates or we will get lost in the system. I did a few things that were not expected. I carried my baby to term, birthed her at home, and did not have her body taken away to a funeral home. I simply refused those options, even though they might have been easier choices.
I can’t imagine that abortion is an easy decision though. There is still a loss. When I was mourning after my baby died, post-partum hormones raging, I knew that some people thought I wouldn’t be going through this if I had terminated my pregnancy. It’s not so simple. I know women who have had abortions and they are still dealing with their choice years later, just as I will always walk my path with the consequences of my choice to birth and bury my newborn.
I was childless for 15 years, not by choice. In that decade and a half I wanted to be pregnant. I wanted a child of my own with every cell of my body. I knew that I could not terminate a pregnancy regardless of the child’s outcomes even when a child was an abstract wish far off in the future. I first felt Mary Rose move in the genetic counselor’s office as she was asking me if I would have an abortion. I firmly stated, “No.” I wished for a child and I had a child. I knew that there would probably be no holidays, no milestones, not much time. Babies with trisomy 18 have a range of possibility. Fifty percent are born still and most die within the first hours, days and weeks. Under 5% live to their first birthdays and most of these are on life support.
My husband and I agreed that we would not terminate the pregnancy and then decided that we did not want life support for our newborn. If our baby could not breathe on her own, could not eat, or suck, we wanted to hold the space to honor her peaceful death. We were making these intense decisions with our neonatologist, midwife and priest and then someone would say “You didn’t have an abortion?” What gave us away? The fact that I was seven, then eight, then nine months pregnant. I had one question: Why is this any of your business?
The decision to carry a child with a fatal illness to term or not, to choose life support for an unborn baby or not, to plan a funeral instead of readying a nursery, these are all private decisions. For those who feel that they should weigh in, let me stop you here. If a couple asks “What should we do?” then it is appropriate to give advice. In our case we never asked anyone for advice, except for our midwife, Mary Rose’s doctors, and our priest. We wanted to be sure that our decisions were ethical, that we were not denying our daughter anything as her parents. But life is life. She would either breathe on her own, or she would not. She would either eat, or not. And in our daughter’s case she did none of these things.
For people who don’t know what to say, say less. The comments I appreciated the most were “I don’t understand what you are going through, but I’m here for you.” That says I love you, but I won’t boss you around. It is somewhat comical the way people dispensed advice. One mother told me “I wouldn’t do anything. Just wait and believe that God will heal your baby. Do you pray? Do you believe in miracles?” That’s a great way to kick a woman already on her knees further down. I believe in miracles, but I also believe in accepting God’s will. I had carried a healthy child to term and I knew that my daughter’s body was not developing normally. If I had listened to this woman what would we have done with Mary Rose’s body? We had already purchased a plot and had a casket for the burial. She was buried within 26 hours of birth. I couldn’t exactly wait to see what would play out when the tests were 99.8% accurate.
The sweet baby, Grace Miriam, whom I mentioned in a previous post has full trisomy 18, spina bifida and hydrocephalus. Most people would have aborted Grace, but her parents, who are devout Catholics, carried Grace to term. She is alive and breathes on her own. Grace has survived surgery on her spine and surgery to place a shunt in her brain. A priest friend told Grace’s father that they should consider their time with Grace as Holy Hours. I am so grateful that our Creator “use[s] the foolish things of this world.” Grace is alive. We see life in the fragmentation of our individual lives, but what about the bigger picture of one, connected, pulsing Universe? How many lives is Grace touching? Why do humans think that one life is more valuable than another?
I think back on my pregnancy with Mary Rose and remember feeling so vulnerable and alone. May I suggest that if your friend or sister or cousin has had a troubling ultrasound or a miscarriage, that you offer her a box of tissues and a cup of tea? A hug. Shared tears. Unless you have ever been “diagnosed” with a pregnancy that is considered fatal, don’t offer advice. You really don’t know what you would do. Even my friend, Miko, whose son, Josh, died as an adult in a car accident agrees that she couldn’t give me advice on the pregnancy. You can’t know until you are standing there, hands on your belly, at the crossroads, feeling your child move, loving her no matter what.