I.
Lives of babies as we tend to think of them have a path, an aim that they are ultimately directed toward: a telos. The term comes to us through Aristotle, yet the experience of telos is widespread.
Little Jimmy or Juan or Jiang can’t walk or say one word now, but pretty soon he will take his first steps, say his first words, start almost 20 years of schooling, have his first communion or bar mitzvah, date, find a career path, marry, have children of his own, and make his parents grandparents with what time they have left on this Earth. Babies thus represent hope in a familial and an evolutionary sense. Through Jimmy (Juan, etc.), the family line will go on, and mankind will go on.
It is this shared sense of telos that people celebrate when they tell mothers with baby bumps and swelling bellies “You must be so excited!” and dote over babies once they are born. We look at new life and see potential. But it doesn’t always work out the way we expect it should.
Some early life falls well short of this telos, beginning with the generally accepted figure that one-in-five conceptions results in a miscarriage. That happened to my new wife last June. We had just told close family that Anj was expecting. After an early trip to the ER, that expectation was dashed. One long, bloody, painful night later, it was over.
We took our lumps and moved on. She was pregnant again six months later. The second time around, we again told close family though didn’t broadcast it widely until we were out of the statistically dangerous first trimester.
Then came an unexpected twist of the knife. A routine ultrasound revealed an anomaly. They saw a potential defect that was, per our Ob-Gyn, “not compatible with life,” meaning life outside of the womb. In late March, we traveled from Blaine, Washington, down I-5 to Seattle for a second opinion and confirmation.
II.
The night before our appointment at Swedish Hospital, we stayed at the home of a friend who is a sci-fi geek. He had downloaded the movie Arrival. Did we want to watch it to kill time? Take this as a spoiler notice but also, for couples facing down a potentially devastating diagnosis, a warning: DO NOT watch this movie at this time. Come back to it later, if ever.
The larger story in Arrival is of an alien visitation. Our world’s governments respond to it with suspicion and escalating hostility. The more intimate story is of a two-person team of American scientists whose job it is to communicate with the octopus-like advanced creatures.
For the lead scientists, it’s a mystery and a love story and a tragedy wrapped into one pink bundle. Because of the nature of the alien encounter, linguist Louise Banks (played by Amy Adams) comes unstuck in time. A conversation she is having right at this minute can come “back” to her several years ago. This foreknowledge helps her to avert worldwide calamity.
One of the future things that Banks experiences as if it were a past event is that she and her scientist partner, physicist Ian Donnelly (Jeremy Renner), will fall in love and have a child. The girl will not go on to fulfill her telos because she will have a genetic disease that kills her in her teens after a long struggle.
Banks sees that Donnelly will not be at all understanding. He will wonder how she could be so cruel as to bring a child into this world under such horrible circumstances. He will see his little girl as a sorrow too deep to bear. He will leave them, though they won’t lack for material support. Knowing all of those things, she decides to go ahead with it anyway.
By the time the credits rolled, my wife was weeping and my eyes were not entirely dry. We had seen dramatized something like what we were facing if the diagnosis was confirmed the next day. In the movie, there were things that lessened the blow. The girl would at least get to be raised by a loving mother and live into her teens. Her life now would help to have saved the world. In real life, if this checked out, not so much.
III.
Anencephaly is a neural tube defect disorder, caused by a failure of the structure that becomes the brain and spinal cord to pinch off correctly in the first month of a pregnancy. At one end, this results in spina bifida. At the other end, it throws off the proper development of the skull and brain.
It occurs in about 3 in 10,000 births and is almost always fatal within hours of delivery. Occasionally, a child with a very mild case of anencephaly will live for a few years. An even rarer condition related to anencephaly is called exencephaly. Fetal lives with this condition have substantially more brain development than anencephalics, but it doesn’t do them much good because they don’t have a skullcap to keep it all in.
Again, a warning: Do not search for pictures of either of these conditions. You may lose your lunch. When we saw on the crystal clear ultrasound that the baby’s brain was floating freely above her head, it was something that our skull-encased minds recoiled at. We could have done without further medical confirmation at that point, though three doctors still had plenty to say.
A diagnosis of exenephaly is a horror show in slow motion. In almost every way, the baby in the womb behaves like, well, like a normal baby in the womb would behave. She kicks a lot. She responds to certain familiar sounds and tends to stay still when new people are around. She likes spirited music and seems to move to the beat.
When she starts thrashing around too much, Anj touches her belly. The little girl, who we’ve nicknamed Cecelia Little Lott, usually pipes down. The other day when we attended a conference, that trick wasn’t working. I leaned in and spoke into Anj’s belly in a loud whisper, “Knock it off kid!” My jokes are often more persuasive than my arguments. She did indeed knock it off.
In the usual course of events, we would be enjoying the quirks and joys of pregnancy, along with the acid reflux. But like Louise Banks, we know what’s coming next. This creates agonizing social awkwardness. When people who Anj doesn’t know well look at her and say, “Oh you must be so excited! When are you due?!” how the blazes is she supposed to answer that? So we don’t go out as much these days. It’s much easier to stay home and play with our dog Siska. She asks fewer questions.
Normally when you schedule a c-section delivery, there is a mix of emotions. On the one hand, there is a lot of pain and some scarring associated with recovery that you have to steel yourself against. On the other, you’re recovering with a baby. When you schedule a c-section where exencephaly is involved, you are scheduling not just a birthday but also a death day. And so if things go to plan, August 21 is going to be a day of mourning.
IV.
So why go through with it at all? Most women who get the diagnosis opt to end their pregnancies. Doctors hinted at that option a couple of times with us. In all but perhaps Catholic hospitals, this is not even controversial. “Advice and counselling for abortion is to be given to parents,” states one resource for radiologists, matter-of-factly.
Before I answer that question, let me tell you what we’ve seen on ultrasounds of Cecelia, other than the brains floating above her head. At times she’s very energetic and kicks a lot. Other times she appears to be resting or sleeping. She does some funny things with her hands. She holds them up to her face, as if she’s playing peek-a-boo. She sucks her thumb, as all babies do. She also likes to interlace her fingers, like we do when we’re nervous, or praying, or cracking our knuckles. She’s got my wife’s lower lip and we keep arguing about the nose. Is it smaller and pointed like mine or more rounded like Anj’s? Our Ob-Gyn diplomatically says a case could be made for both. In other words, this is very much our daughter, and we’d like to meet her if possible, only for a few hours or minutes.
Before ultrasounds, there would have been little about this pregnancy to tip us off. We would have just delivered and been shocked. This sonic eye into the womb is all seeing, but the healthcare industry tends to press for one interpretation of those images. They point to the gray matter floating freely and say that there is no hope here, no telos. This life, outside of the womb, they say, will quickly flicker and go out. Better to abort and seek counseling now than go through with it and prolong the pain.
It’s easy to understand why they would do counsel that. And it’s easy to understand why most parents would take that counsel. Among many other considerations is this very practical one: Babies with exencephaly cost a lot more in tests and other medical expenses.
We have what passes for decent insurance under Obamacare, but Anj couldn’t work while we got her green card—because she comes from the exotic nation of Canada—and I’m a contractor, not an employee.
What that means for us, financially, is that our total medical expenses this year alone will probably come to $20,000, if not a bit more. A brother offered to set up a GoFundMe page. I balked at first. We’re not rich but such efforts seem more worthy when they go to help the truly needy. Yet facing down such a huge bill, I swallowed my pride and said “Well, OK.”
V.
None of these decisions are easy ones and the culture of and political and economic pressures on American healthcare haven’t helped matters. It also revealed a Louise Banks-Ian Donnelly-style split between the two of us in how we think about these things. I mention this split because it may be useful for other couples who are struggling with the same decision and not exactly seeing eye-to-eye.
Anj is a genuinely devout Catholic and pro-life, full stop. I am less devout and pro-life “with the exceptions,” as a certain businessman-cum-president put it. We both read the United States Conference of Catholic Bishops’ statement “Moral Principles Concerning Infants with Anencephaly” which insists that these lives have intrinsic merit, quite apart from their telos. We found the statement wanting, especially with respect to the dangers posed later in such pregnancies and the advisability of earlier deliveries. When the bishops venture into the science of it, they say too much, too confidently.
The real divide came when Anj found the statement a little bit useful at the time and I did not. Ours struck me as such an extreme situation, so far outside of the norm that it’s hard to apply any principles to it. But the fact that the bishops had put serious thought into a rare fatal birth defect, related to the one we were facing down, forced me to do my own thinking.
Religion gives us hope about what comes next, but we don’t know for sure. So I focused on what we think that we know about this situation. She doesn’t have a telos yet she is still here with us. Our daughter’s condition is ultimately “not compatible with life” but it continues, for now, in the womb. She eats what Anj eats. She kicks and she grasps and she listens and reacts to the world out here. She must be curious about it at some level. Maybe she dreams. This is, practically speaking, all the life she’ll ever know, but it’s not nothing.
I don’t know if the delivery will be successful. If so, she won’t be with us for long. But it seems right to me that we ought to give her until then just to be.
Jeremy Lott writes from Blaine, Washington.
