Elizabeth, Virginia

I was always pro-choice … for OTHER people. For myself, I always wanted to be a mom. If anyone had ever offered ME an abortion, I probably would have hit that person with a 2-by-4.

Fast forward to my marriage; birth of my wonderful daughter; pregnancy again; and then slow the tape at the moment in the routine 21-week ultrasound when they said “This doesn’t look good”. Then: days and weeks of research, sleeplessness, crying, and terrible discussions about “what is quality of life?”

That is how I found myself walking through protesters to obtain a later-term abortion.

Three lessons learned.

Lesson 1. Pregnancies are complicated, and high stakes, and through nobody’s fault, they can go wrong. Every time you get pregnant, you spin the wheel of fortune and all outcomes, good and bad, are suddenly on the table and out of your control.

I was so healthy, my husband was so healthy, our daughter was so healthy – that when they said ^Matthew^ was unhealthy, it was like a meteor flattened us out of the clear blue sky. But what I have learned since our loss, by talking to the many women I have met that had the same or similar experience, is that human reproduction is like that. In fact, the main thing I took away from the book “When Bad Things Happen to Good People” is there may be a God, and He may have created the world, but the world He created has randomness in it. The more time I spend learning about pregnancy complications, the more I have learned that getting pregnant is just like drawing cards from a deck. Hopefully you draw the “healthy baby” card, and draw it repeatedly if you are ready for multiple kids; but often you draw a different card. How often, I only learned after our loss. Then all the stories came out of the woodwork — people who had had miscarriages (early and late), and the shockingly high number of people in my personal network who, it turned out, had also terminated pregnancies due to poor prenatal diagnoses of various kinds. Pregnancies are complicated, and things go wrong in random ways that are nobody’s fault … it’s just that consequences for the families involved are terrible.

At first, the OBs thought the intestinal and growth problems that ^Matthew^ had were caused by a TORCH infection — something that might have felt like a cold to me during pregnancy but that can devastate the fetus physically as well as causing mental retardation. Now through my support group, I know women who have had that terrible random chance affect their pregnancies, and who have terminated pregnancies as a result.

But my blood test for those infections came back negative. Also my test for cystic fibrosis, another suspect — but not before a friend accidentally mentioned a family she knew who found out that both their kids had CF when the younger sibling was diagnosed. That idea had me up every night, lying on the floor of my sleeping toddler’s room, staring at the ceiling bleakly, trying to accept that I lived in a world in which my joyful second pregnancy could become one in which I could lose BOTH kids. It was a low probability event — but low probability events can and do happen to someone. I lay awake trying to accept that that someone was me.

In the end, it turned out ^Matthew^ had Trisomy 21, a.k.a. Down syndrome. What this meant for my husband and me was a hard look at what we believed about quality of life and our family’s ability to raise a child with special needs — with no ability to forecast how severe his outcome would be. In the media, we have all seen some “Down Syndrome superstars”; less publicized are severe outcomes like babies dying in the first year, or people so severely affected that they have the cognitive function of toddlers, are non-verbal, and/or suffer from major physical problems. We already knew ^Matthew^ had intestinal defects. But for us, the decision to terminate came down to our personal belief that quality of life is linked to cognitive functioning. We have close family friends with sons who are cognitively impaired and have faced a hard road as those children turned into adults with no ability to complete school, hold even basic jobs, have any real independence, and certainly no families of their own. Those are very unhappy young men and unhappy families… and then I learned about the high incidence of Alzheimer’s-like dementia that affects many people with Down syndrome. My grandfather died of Alzheimer’s. My perspective was that for ^Matthew^, a life of low physical health, sub-normal cognitive ability, no real independence, and high likelihood of an early death associated with slow decline into dementia — that was no life at all for my son, who I already loved so much.

Lesson 2. It’s no one’s right to second-guess families in their personal reproductive situations. The decision we made was personal, based on our family, our beliefs, our ability to cope with the challenges ahead of us, and our research and judgment as to what the quality of ^Matthew’s^ life would be.

Since our termination, I’ve had my eyes opened to both the awful state of reproductive politics in general and also the messy politics of terminating for T21 diagnosis in particular.

We’re all familiar with the craziness of abortion politics, but it was shocking to have those politics suddenly affect ME and MY FAMILY, especially when we were distracted by the fact that we were going through the worst days of our lives. Did I mention that I had to walk through protesters outside the clinic, who shouted things at me? It was so appalling — not because I believed what they said, but because I couldn’t believe that anyone would have the audacity to believe that they knew or wanted better for my son and my family than I did. My reaction from deep inside was, “Don’t you know you’re talking about my son? Don’t you know he is a part of me?” (Let alone the fact that I was, at that moment, in a personal hell — I really don’t know how anyone would think that things shouted at a person already in a personal hell would make much difference to her!)

The concept that anyone would have the temerity to second-guess women’s choices by limiting or eliminating abortion access altogether is just mind boggling to me after all we went through. Talk about separation of church and state! The question of the morality of abortion hinges on the question of when you believe life begins — which I’m pretty sure we can all agree is not an easy question. Another way of saying this is that there IS no answer; it’s a question of PHILOSOPHY and BELIEF and PERSONAL situations. That makes abortion politics crazy in my mind. I would never ever presume to make this choice for anyone else; I could hardly make it for myself, it was so complicated, grey, emotional, and personal. How can any legislator take it upon himself to say he knows better for me and my family?

Lesson 3. People in the position of terminating any pregnancy, but especially a later-term pregnancy, need quality health care and compassion, and they need those things INTENSELY.

Remember that my case, our routine ultrasound was scheduled at 21 weeks, which would already have been over the limit for obtaining an abortion in states that have taken it upon themselves to draw the line at 20 weeks. And our diagnosis was at first uncertain; we did an array of different tests to figure out what was causing the problems my OBs saw. At one point I remember asking my doctor, “Since all these scenarios are so bad” — there was no “minor” scenario to cling to — “Why are we doing all this testing and drawing it out?” She said that it was such a serious decision to make, we needed all the information we could get. So we lived through the worst three weeks of my life. I stopped going to work. I sent my husband off to work and my daughter off to preschool and I lay on the floor of my house with my cell phone in my hand, waiting every day for the OB to call me. I breathed in and out. There was nothing I could do to hurry the situation. There was no way to get answers except by waiting for these test results to come back. I felt like a prisoner in my own body…. I watched stupid movies out of desperation to escape my reality for just a little while.

Finally the results came back as T21. We did the research, and came to our heart wrenching decision. But I was 24 weeks — over the limit in Virginia. My doctors said not only could they not terminate the pregnancy (though they sure were available to do all those tests!), they didn’t know anyone anywhere in Virginia, DC, or Maryland who would. There was a moment when it seemed like maybe there was no place to go and no one to help. I can’t explain to you the desperation that I felt. I felt like the health care system had opened up a yawning hole and dropped me into it at the moment that I most needed help. It was a terrible feeling.

Fortunately for us, we found access to care in an out-of-state clinic of a noted provider of later-term abortions for medical reasons. At that point I would have taken risks and considered low quality care — we were so fortunate to actually find high quality care and dedicated providers who make it their life’s work to help women in my situation, despite many dire consequences to themselves.

Even more fortunate, not only did I find access to services, I also — unexpectedly — found compassion there. When I went into that facility (through the protesters who camp outside there and threaten this doctor and his staff every day), I was a shell of myself. I have never been so low. The staff at the clinic was unexpectedly kind. They gave me counseling and resources. And then, as I sat in the exam room suffering the worst emotional pain I ever experienced, the doctor came into the room. This man — targeted with violence by many for his work — stopped, looked me in the face, and said, “I want you to know …that I know …that you are a good parent.”

That’s my conclusion, my wish, and my reason for sharing this story with you today. EVERY woman and EVERY family in the situation of terminating a pregnancy deserves access. EVERY woman and EVERY family in the situation of terminating a pregnancy late in gestation also deserves that kind of compassion.