The Republic of T.

Black. Gay. Father. Vegetarian. Buddhist. Liberal.

Intentionally Choosing

On the heels of the Supreme Court’s decision on late-term abortions, David Kuo — a devout Christian who’s against legal abortion — posted a link to this moving story of how one family chose to deal with the news that their fetus had a genetic syndrome that causes numerous physical deformities, and is almost always fatal. With the support of family, church and community, they made the choice to carry the pregnancy to term. Their baby died 35 minutes after delivery.

It’s a touching story, and the family’s choices were clearly grounded to some degree in their religious beliefs. I respect that. They made the choice they thought was best for their family, and it wasn’t an easy choice to make. I’ve never been in their situation, and I’ll never be pregnant so I can’t know what it’s like to face that kind of news, or stand by a spouse facing that reality. However, as I listened to the Weatherford’s story, I couldn’t help thinking there’s another side that should be remembered as well.

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While reading the Weatherford’s story, I immediately thought of another story I blogged about last year, about another family’s heart-wrenching choice. I’m quoting it here at length, because I don’t want it to be missed.

In November, when I was 22 weeks pregnant, we received news that would forever change our lives. A sonogram at the perinatologist’s office revealed that our son, Thomas, had a condition known as arthrogryposis. The doctor’s face spoke volumes when he returned from fetching a medical book to confirm the rare diagnosis. He explained that arthrogryposis was a condition that causes permanent flexation of the muscle tissue. The condition could be caused by over 200 different diseases and syndromes, with a wide array of severity.

He asked for permission to do an immediate amniocentesis, and for the first time he used the word “termination. It was then that I first realized the gravity of our situation.

My husband and I were shocked and struggled to comprehend what we were being told.. It would take two weeks to receive the results of the amniocentesis, which might reveal the cause of the arthrogryposis, but we already knew that the prognosis was not good.

The ultrasound showed that Thomas had clubbed hands and feet. His legs were fixed in a bent position and his arms were permanently flexed straight. He had a cleft palate and swelling on his skull – a condition that would likely kill him in and of itself. Due to his inability to move, Thomas’s muscles had deteriorated to 25% or their usual size, and his bones to 25% of their usual density.

My husband and I were sent home to grapple with the news and face an unwelcome decision: whether or not to continue with the pregnancy.

… By the time the amnio results came back, we had two days left to make a decision before hitting the 24 week mark – after which, no doctor in Texas would terminate a pregnancy. The results were devastating. Our son had no chromosomal disorder. There was no explanation at all for his condition, and as such, no way to predict the scope of his suffering. We would have to make our decision based strictly on what the ultrasound had revealed.

My husband and I decided that we would have to use the golden rule. We would do for Thomas what we would want done for us in the same situation.

We tried to look at the evidence as honestly as we could. Even the best case scenario was abominable.. Thomas would lead a very short life of only a few years at the very most. During those years he would be in constant pain from the ceaseless, charley-horse-type cramps that would rack his body. He would undergo numerous, largely ineffective surgeries, just to stay alive. He would never be able to walk or stand; never grasp anything, never be able to hold himself upright. He wouldn’t even be able to suck his own thumb for comfort. And this was only if we were lucky. The more likely scenarios tended toward fetal death and serious health complications for me.

We made our decision with one day to go and left for Houston where we would end Thomas’s suffering in one quick and painless moment. Though we wanted to stay at home, _______ was no longer an option, as all of the hospitals were religiously-backed and there was no time to convene an ethics committee hearing.

In Houston, God graced us with some of the most compassionate people we’d ever met. The first was our maternal-fetal medicine specialist, who confirmed that the prognosis was even direr than originally thought. In a procedure very similar to an amniocentesis, Thomas’s heart was stopped with a simple injection. In that moment, as I held my husband’s hand, I met God and handed him my precious boy to care for, for all eternity.

Over the next 17 hours I labored to deliver Thomas’s body. It was a painful experience, but the only option given to a woman at 24 weeks gestation. Thomas Stephen _______ was born into this world just after 6:00 a.m. on November 27, 2002 – the day before Thanksgiving.

The loving nurse who’d helped us through labor cleaned his fragile body and brought him to us. We held our boy for the next hour as we said goodbye. Our own eyes confirmed what our hearts had already come to know: that Thomas was not meant for this world. The hospital’s pastor joined us and we christened Thomas in the baptism bonnet I’d worn as an infant.

Thomas’s life and death have changed our lives in ways we will never fully comprehend I know he made me a better mother, a better friend, and a less judgmental, more compassionate human being. I know he is the reason I have the courage to stand in front of you today.

Through him, I’ve grown closer to God, who understands what it is to sacrifice your only begotten son in the name of mercy.

During the summer and fall that followed Thomas’s death, my husband and I lost two more children during first trimester miscarriages. We lost three children within the space of one year. On January 17th of this year, our prayers were finally answered with the birth of our daughter, Hannah. If anyone knows about the value and sanctity of life, I assure you, it is us.

Booman linked to another woman’s story of her difficult choice.

Later that morning, at quarter past 9, Dave held my hand as I lay on the cushy examining table at the Beth Israel Deaconess Medical Center office in Lexington. As images of our baby filled the black screen, we oohed and aahed like the goofy expectant parents that we were. “Can you tell if it’s a boy or a girl?” I must have asked a million stupid times. The technician was noncommittal, stoic, and I started feeling uncomfortable. Where I was all bubbly chitchat, she was all furrow-browed concentration. She told us that she had a child with Down syndrome, and that none of her prenatal tests had picked it up. I thought that was odd.

Then, using an excuse about finishing something on her previous ultrasound, she left the room. Seconds passed into minutes while we waited for her to return. Staring at the pictures of fuzzy kittens and kissing dolphins on the ceiling, I knew something was wrong. Dave tried to reassure me, but when the ultrasound technician told us that our doctor wanted to see us, I started to shake. “But she doesn’t even know we’re here,” I said to her, and then to Dave, over and over. That’s when I started crying. I could barely get my clothes back on.

The waiting room upstairs, usually full of happy pregnant women devouring parenting magazines, was empty. Our doctor, who usually wears a smile below her chestnut hair, met us at the front desk. She was not smiling that day as she led us back to her cramped office, full of framed photos of her own children.

As we sat there, she said that the ultrasound indicated that the fetus had an open neural tube defect, meaning that the spinal column had not closed properly. It was a term I remembered skipping right over in my pregnancy book, along with all the other fetal anomalies and birth defects that I thought referred to other people’s babies, not mine. She couldn’t tell us much more. We would have to go to the main hospital in Boston, which had a more high-tech machine and a more highly trained technician. She tried to be hopeful — there was a wide range of severity with these defects, she said. And then she left us to cry.

It’s important to hear these women, these families, because the Supreme Court decision effectively says to these families “you no longer have a choice.” It says to them, “you must make the same decision” as the Weatherford family did, no matter what they’re circumstances might be.

As I listened to Jessica Weatherford tell her story, one particular phrase she used stuck in my mind, that “intentionally choosing” to carry her pregnancy to term was how she believed she could be the best mother to her baby for as long as she had him. But the families in the two stories above made different choices, which they also believed were the best they could make for their families; for their children. But the Supreme Court has effectively said they may no longer intentionally choose what they believe is best for their families.

Jessica Weatherford said she believed that her son came into the world to teach her and her husband “lessons of parenting and love that we would never have learned any other ways.” And, again, I have nothing but respect for her belief. But those were lessons that she and her husband “intentionally chose” and understood within the context of their beliefs. Why should families like the ones in the two stories above not have the right to make choices for their own families in accord with their beliefs? Why must their choices and beliefs not be respected?

It’s a part of pattern of narrowing choices and not respecting choices people make based on beliefs that fall outside of a very narrow set, a patter that Amanda lays out very effectively in her “Take My Uterus” post. It’s the same pattern of narrowing choices for women that I think includes opposition to the gender equality implied in marriage equality. It’s part of a pattern of intentionally choosing to prohibit families from intentionally choosing what they believe is best for their families. It’s a pattern that the woman in the first of the two stories above spoke out against to her state legislature.

I am here today in my son’s honor to tell you that life doesn’t always follow an easy path. And that life is almost never a black and white issue to be governed by others. I am here to put a face on the issue of abortion for all the families that cannot be here today. And I am here to beg you to remember me and Thomas each and every time you contemplate legislation that would deteriorate our God-given parental rights to do what is moral and just for our children.

It’s part of a pattern of intentionally choosing to ignore a whole host of issues. Or, as Jesse Lava puts it, intentionally choosing to miss the point.

After all, banning a single procedure doesn’t keep doctors from using other ones. It doesn’t encourage women to carry their pregnancies to term or, better yet, to avoid unwanted pregnancies in the first place. Simply, it does not protect life, born or unborn.

Strange, then, that the religious right has toiled for over a decade to pass this ban. There are bills in Congress right now that would vastly reduce the abortion rate in ways that most Americans can get behind.

Pro-choice Democrat Rosa DeLauro has teamed up with pro-life Democrat Tim Ryan in the House of Representatives to introduce the “Reducing the Need for Abortion and Supporting Parents Act.” This bill would make contraception more accessible and provide healthcare and other services to women as they enter parenthood.

Pro-life Democrat Lincoln Davis has also proposed a measure to reduce the abortion rate, and Democrats for Life has been pushing the 95-10 initiative, which aims to cut the abortion rate by 95 percent over 10 years.

Take your pick; all of these measures would help protect life and unite Americans on the most divisive issue of our age. All of these measures would reflect the values of the 66 percent of Americans and 61 percent of white evangelicals who want the country to find a middle ground on abortion. None of these measures, however, is politically useful to Republicans or the religious right. Maybe that’s why the anti-abortion crusaders haven’t lifted a finger to get these bills passed.

There’s a lesson to be learned here: just because a party calls itself pro-life doesn’t make it pro-life. Republicans talk a big game on abortion, but Democrats – many of them, anyway – are rolling up their sleeves and doing the hard work of finding practical solutions to a national problem.

It’s part of a pattern of intentionally choosing to ignore issues like the female face of poverty, and choosing not to implement programs and services that might make it easier for families, and thus reduce abortions.

Already in 1995 the UN Human Development Report estimated that the economic value of the unpaid work of women worldwide is a whopping 11 trillion dollars per year. A 2004 Swiss government survey placed the value of the unpaid work in households at 70 percent of the reported Swiss GDP. And according to salary.com, a U.S. organization, the caring work of a mother is worth over $100,000 per year.

Recognizing the value of caring and caregiving is the first step. The next, essential step, is changing business practices and government policies to recognize and reward this work in ways that put food on the table and a roof over people’s heads. We need family-friendly business policies such as good paid parental leave and government policies such as caregiver tax credits and, for poor mothers, caregiver stipends and other forms of parenting assistance.

The Canadians are already doing this: their Healthy Babies, Healthy Children program offers assistance to mothers. And it’s a tremendous economic investment in the bargain. Assessments of the program show that children are gaining in health and skill levels due to this assistance — in other words, that in economic terms, the program is an excellent investment in high quality human capital.

Sweden has a paid parental leave policy that makes it possible for both mothers and fathers to be home with their new babies for many months. By contrast, the only U.S. state that has even a very modest paid parental leave policy is California. But it’s a start — and Mom’s Rising has launched a campaign to bring similar bills to other states, starting in the state of Washington.

But it’s almost guaranteed that such measure, if proposed in this country, would face fierce opposition, and most likely from the people who make the most noise about being “pro-family.”

Talk is cheap, and easy. So is telling people where they should be than meeting them where they are. So is taking away the choices of some families, rather than looking at the realities of all families and changing in order to help all families, whatever their circumstances. It’s easier, and simpler, to see that help as “rewarding” them for “immoral” choices, rather than choosing to help all families in order to help — and heal — our whole society. It’s easier not to see helping “them” as helping us, because it doesn’t require us to change.

That’s the intentional choice we’re making. Still.

12 Comments

  1. Pingback: Feministe » Choices

  2. Excellent post. Thank you.

  3. I live in Quebec and the province has had a history of declining birthrate. This has been dramatically turned around- it cost but it has turned the corner. What it took was paid parental leave for both parents, subsidized early childcare, generous family allowances, organized health units in the community combining social and health services or in other words, massive support for families to take on the task of raising children. Trick is that it costs a ton in taxes and takes years for it all to integrate, what with training of personel and locating the services where needed. There are no quick fixes but denying reasonable medical choices to families is hardly a good start.

  4. Pingback: a bird and a bottle

  5. Thank you.

    I made this awful choice myself a year and a half ago. That the supreme court feels they can make this decision for parents outrages and saddens me. I am grateful I was able to – as awful as it was. The worst time in my life. But sitll, a choice I would make again. That others may now not be able to…

    I also find it odd that they are, in fact, practicing medicine without being doctors themselves. How can they know what procedure is best for each case? They cannot.

    Further, let’s also not forget there is no health exception of the mother this time. Once again, men know best, women and their bodies, their choices, do not.

    It is a sad day in this country.

  6. One of the things I’ve always respected about you and just been so, so incredibly grateful for from you as a human being and as a good friend, is just how completely and totally you get it. You really do understand that it’s one of the most heart-wrenching, terrifying decisions that anyone can ever be faced with, and yet, that it must remain a choice.

    I am appalled by the Supreme Court’s ruling, not only because of the specific issue involved, but also because of the larger issue of interference in practitioner-patient decisions. Taking away the autonomy of the doctor and the patient in determining what is best for the well-being and health of the individual is damaging and limiting health care; not improving it.

  7. This is revoltingly inhumane. I can’t imagne the wisdom with which Congress wants to intervene in medical procedures. I can’t imagine forcing women to risk their lives to give birth to children who can’t possibly survive. And I can’t imagine being the President whose Medicaid cuts are going to make these childrens’ lives even more difficult.

  8. Thank you for this, Terrance.

  9. This was an amazing post. On behalf of women everywhere, Thanks, man.

  10. As a physician, I can honestly say that there is no circumstance that I can think of where a “partial-birth” abortion is medically necessary. It is a very lucrative procedure. The Supreme Court has in no way ruled against abortion. They have upheld a ban on a particular procedure. The fedral government often imposes itself into medical decision making. I am limited on what medications I can prescribe and even what I can or cannot charge patients. The courts often stop what they consider harmful medical practices. No one generally gets upset over this. Think about the legislation aimed at banning smoking. Is not smoking a “right” (albeit a very unhealthy choice)? Where is the outrage?
    I am not a supporter of abortion. I think women have a rights over their own body. No one should ever deny them that right. When a child is involved though, those rights are superceded by the child’s right. (i.e. a parent has no right to abuse or neglect their child). The question is when a fetus becomes a child. Why is it that if an individual murders a pregnant woman, they are guilty of 2 deaths. Is a fetus a human in that instance? The main issue with the specific abortive procedure in question is that because only the head of the fetus is delivered, the fetus can have its brains suctioned out and its skull collapsed. This is defined as a medical procedure. However, should the entire fetus be delivered, rather than just the head, then we have not a fetus, but a human infant, and the same procedure is a hideously inhumane practice.
    I’m sure you have a way that resolves this incinsistency. I however cannot. If there is even a question of depriving an individual their life, isn’t it at least worth considering?

  11. (To the person who commented above)

    You speak as a physician, saying you can find no medical reason, but you do not respond to, for instance, the ‘serious health complications’ mentioned on one of the above paragraphs. Those complications were mentioned by a physician in connection to the birth of the baby, which I’d consider a pretty good medical reason to have this procedure available.
    You also seem to ignore the part where this particular decision/medical practice/debate isn’t about lazy mothers who don’t want to carry perfect children to term. It’s about quality of life both for an unfortunate younger life and the mother. In the end, the choice can often come down to harming the mother to deliver another life into pain and death in a few years anyway.
    Why does the fetus’s plight ‘supersede’ any consideration of the mother, anyway? Complicate it, certainly. Supercede it? A potential life of poor quality is completely worth ignoring the mother’s health and safety, or even deliberately damaging her by denying medical recourse? I’m glad you’re not my doctor.

  12. I never said that the mother’s health should ever be superceded by the the fetus’ plight. I would never jeapordize a mothers health or safety. I just suggest that in a situation where the mother’s health is not an issue, the fact that there is another life involved should perhaps hold some weight against the mother’s right to choice.
    Secondly, while there may be times to end a pregnancy to protect a woman’s life/health, partial birth abortion is not ever a medical necessity.

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