This post is a guest post written by Boston's Mom, Jaye. She had something to say and nowhere to say it, so I offered her this space.
Another day, another abortion restricting law passed.
Generally speaking, I get a little frustrated, a little ticked off. I will repost the article on social media, queued up alongside a hastily written, often profane-laced half-rant. I will note the “likes”—and, now, the sad or angry faces—and respond in kind to the WTFs and the SMDHs. And then I move on. Not because it doesn’t matter—it matters infinitely—but because I feel that, at the end of the day, I can do nothing.
“All I have is a voice, to undo the folded lie…”
I have often thought of telling my story in the context of abortion, but other than offhand conversational moments, it has never happened. I think too much and I feel too little, and my story is a little too personal, a little too raw—even after all this time (yes, “Always”)--to spread myself so thin. We know how it works—if you can’t handle others’ opinions, don’t put yourself out there to begin with. To open up something so devastating and so intimate for it to be judged, mocked, ridiculed by those “That hoard, and sleep, and feed, and know not me” seems almost unbearable. But then, I have braved the unbravable a time or two. And my own person notwithstanding—women’s lives are on the line. My voice might change very little, if anything, but I’ll be damned if my silence contributes to another woman’s pain.
It broke recentlthat Governor Nikki Haley signed a bill into law that denies a woman an abortion after twenty weeks gestation. CNN reported that “Abortions may be performed after 20 weeks only if the mother’s life is in jeopardy” (cnn.com/2016/05/25/politics/sc-abortion-bill/). Reuters reported that the bill does include a second exception “if severe fatal abnormalities will mean a fetus would definitely die at full-term birth” (mobile.reuters.com/article/idUSKCNOYG2XA).
I am not here to go over the usual abortion arguments. They are already out there, written upon extensively and far more astutely than I ever could. I am here to tell my story.
To begin: I have never had an abortion. I have also never needed an abortion.
Nevertheless, access to safe, private abortion care is a very real concern for me. Not just because I am a woman and not just because I have daughters. But also because I had a son.
His name was Boston Wilde.
Our first wedding anniversary was the day my husband, father of four daughters, found out that he had finally made a boy.
I had a normal pregnancy. Some placenta previa, which corrected itself. A nasty bout of pneumonia. Boston had a cleft lip, but we had fought that cleft battle before with my second daughter, so we were ready. In short, everything was fine. There was very little, if anything, drastically abnormal about my pregnancy.
I fantasized about my little boy. Would he be bold and headstrong like his big sisters and mother, or more demure like his father? What would he be like as a teenager? Who would he love?
We bought all the baseball things. His baby shower invitations sported a big Boston Red Sox “B”, announcing the celebration of he who was “joining our starting lineup.” Baseballs sat atop the shower cake. We served popcorn, peanuts, hotdogs and nachos, and, of course, Cracker Jacks. My oldest daughter, nearing four at the time, told everyone she met that she was finally getting brother, something she had requested since she was eighteen-months-old.
A week after my baby shower, everything began to implode.
On August 7, I checked myself into the hospital. I will not get into the treatment I received that day—nor in the weeks to come—because that is another story. Nonetheless, my water had broken at 34 weeks. The next morning, just before eight a.m., I started having contractions. Hospital staff moved quickly to prepare me for an emergency caesarean, for which I had need to be put under since I could not have an epidural or any significant pain medication. I was scared. I was only 34 weeks, after all but 34 weeks was better than 24 weeks. Pushing down the extreme paranoia, it never occurred to me what I would wake up to.
I awoke about 45 minutes after surgery to excruciating pain and to the nurses marveling with my husband about the baby’s soft, fire-kissed hair. They had allowed my husband to carry our son from the operating room to the NICU. Though he didn’t know it then, my husband would be the only person to hold an alive Boston not attached to life-preserving devices.
Time passed and though I still hadn’t seen my boy, I was reassured he was alive—and big! Thirty-four weeks gestation and he weighed 4 lbs., 15 0zs. and measured 17 ¾”.
The NICU doctor visited us, a grim look on his face. Boston was fine, looking, but something was wrong.
I still remember his face, that doctor’s, as if this had all transpired just this morning. I locked eyes with him and asked for a matter-of-fact, no bullshit answer. The doctor dropped his pretenses: “50/50 chance of survival. If that.”
In that moment, a mere ninety minutes into my son’s life, I knew my baby would die.
It took hours to stabilize him for the inevitable transport. We lived in nowhere East Texas, and Boston needed to be life-flighted to Dallas if he had any chance of survival. Twelve hours after his birth, I finally got to see and touch him, this beautiful little boy of mine, for whom we had waited so very long. The flight medic team was there and we were told, repeatedly, that Boston was so weak they were not sure he would survive being moved from one hospital bed to the next, let alone the flight. But he had to go, if there was any hope.
There was no hope, of course, and had I known then what I know now, I would have disconnected everything and held him on my chest until he died. But I didn’t know, and what was can never be.
Boston did make the flight to Dallas, but we were all in for a night of terror.
The NICU nurse from the Dallas hospitals called my hospital to inform them the baby was dying. My doctor consented, and, twenty-four hours after emergency surgery, I found myself sitting in the passenger seat of our beat-up minivan, blazing down I-20.
Doctor after doctor. Nurse after nurse. Call after call. “He’ll be dead before you get here. We’re losing him right now. Can your aunt hold him?”
Please, don’t let my baby died alone.
At one point, my aunt held her phone to Boston’s ear so he could hear my voice for the first time since he had been ripped from my womb. I told him it was a lot for me to ask of him, but could he please hand on just a little while longer.
He did, and we made it. I was broken physically, running on sheer desperation, adrenaline, and August-in-Texas heat. I couldn’t walk, so I was wheeled to the NICU where I finally held my baby for the first time.
Everything happened so quickly. We were moved into a larger, more private room. The doctor visited. The prognosis was bleak. There is no reason for him to be alive. We have him stable, but we have no idea what is the matter. We intend to keep trying, everything we can, but the reality is…
A photographer came to give us the gift of memory. The nurses worried over me, far more than my own doctors had. My aunt stooped down to put socks on my frigid blue feet. I held my boy.
After things had settled, my aunts, who had kept vigil all night, left for food and coffee. My husband went in search of Advil in attempt to curb the onslaught of pain raging through my body. It was just Boston—Archimedes Boston Wilde English—and his mother. I twiddled his touch-me-please peach fuzz hair in my fingers. I marveled at his size—his tiny fists, black and blue from IVs, his face—so like his big sister’s; his Daddy’s nose. His little body was swollen and yellow-hued, pumped full of the elixir meant to save him. As I whispered everything and nothing to him, he struggled to open his eyes, those mud-colored, jaundiced eyes, desperate to see me, but so fucking tired.
“You don’t have to fight anymore. I am here now.”
His blood pressure dropped immediately. The nurse and doctor rushed in and I relayed to them what I had said. The doctor met my eyes quizzically but knowingly, nodding. “Let’s get Dad and the aunts back.”
I knew what needed to be done, but I was terrified. I had never watched death live, and everything in me wanted to pass that burden of Boston’s last breaths on to someone, anyone, else. But I held on. He had held on for me, I owed that much to him.
The staff hovered at the door quietly. As a nurse worked to remove all the wires save the heart monitor, I hurriedly asked about organ, tissue, any donation that could make some sense of losing my only son. There was nothing. He was just too broken. By what, we still didn’t know.
Death wasn’t as dramatic as I had anticipated. Four short bursts of air rattled from his lungs and he was gone, like blowing out a small flame, the only evidence of its having been? The soft trail of smoke it left behind to waft in the air.
We consented to an autopsy. He was cremated and, two weeks later, we held a memorial service where everyone who came to say goodbye sang “Take Me Out to the Ballgame.” I had no idea how haunting the refrain “One, two, three strikes—You’re out!” could be, until my third strike left my family shattered. Then, my husband and I, along with our little girls, had to get on with the hardest part of death—living without him, Boston, our son and baby brother.
I know you are wondering by now why this is taking so long—it’s the internet, after. And what, exactly, does any of this have to do with abortion?
It took four months to get the autopsy results back. In those four months, we prepared for what we thought would be the worst possible outcome—that the results would be inconclusive and we would never know why our baby died. We never anticipated that what caused his death might be just as devastating as actually losing him.
It’s called Neonatal Hemochromatosis. You have never heard of it. I had never heard of it. Most medical professionals have never heard of it. In fact, most of the time, it can only be diagnosed via autopsy. I am a liberal arts type, so science is lost on me, but the general course of the disease is as follows: there’s nothing wrong with the fetus. It isn’t a fatal anomaly, N.H. In fact, the pregnancy progresses perfectly and the very limited research into N.H. indicates that the fetus is not even impacted until late in the second trimester, potentially even into the beginning of the third. In short, about the time, or after, all these abortion bans passing through state senates like wildfire. Basically, the mother’s immune system rejects the fetus as if the fetus were a bad organ transplant. The mother’s antibodies cross the placenta and attack the fetus’ liver with fatal deposits of iron. This, again, takes place in the latter half (or latter third) of pregnancy. As of today, there are no prenatal preventative measures or even diagnostic techniques.
Some N.H. babies have survived after liver transplant. Almost all die before birth or shortly thereafter. For all intents and purposes, it’s a fatal disease. And it is at least 85% recurrent. Some estimates put that percentage even higher.
Imagine, for a moment, my devastation. As a woman. A wife. A mother. A scholar. A freethinker. A redneck-born, Harry Potter loving, baseball obsessed, liberal girl with no name from nowhere, Little Hope, Texas. Not only have I lost my only son; now I know that my body killed him.
I am the atheist who ate her baby.
At first, we were told there was no treatment, signaling that we could never have more children. Later, we found out there was a treatment: IVIG infusions that would need to occur weekly, beginning at 14 weeks gestation and culminating just before delivery. Replacing the mother’s antibodies with a donor’s has proven as, or more, successful than the rate of recurrence. Still, IVIG treatments for Neonatal Hemochromatosis are not yet FDA approved (meaning insurance can deny the treatment) and it is costly—some $10,000 per treatment according to one physician I questioned (multiply that by at least 14 weeks).
You might be beginning to see how my story plays into the abortion debate, but I will elaborate.
I could go have my tubes tied. I could get on birth control. My husband could get snipped. We could take all the precautions—and every one could fail and I could become pregnant.
On the other hand, say we did try to have another child (I suspect that I am infertile from the c-section, but that is also beside the point). Say we took every necessary step to ensure we had healthcare and that the insurance company has assured us that the treatment will be covered, so we press on, conceive, but only to meet that 14 week treatment commencement deadline just to be told the treatment will not be covered. Even if there are recourses we can take against the insurance company, that takes time, and while the bureaucrats fight over the red tape, this fetus inside me is actively being murdered by the body of its host.
What if everything works out perfectly and I am approved the treatment, but I react negatively to it, or I simply cannot physically or emotionally handle the treatment? Am I, an adult American woman, going to be forced by my government to undergo invasive treatment to keep alive the fetus in my body?
Do you see, yet, the problem here? The nuances of the circumstance(s)? The Pandora’s box of devastation these abortion restrictions open for women like me?
Where do I fit in these Carolina restrictions? Where’s the slot for Neonatal Hemochromatosis? There isn’t one, you say? You have never heard of it, you say? It’s a minimal factor, you say? I say that almost all late-term abortions are for nuanced reasons the government and its lawmakers will not, and simply cannot, account for.
According to this new law, what happens to me? My life is not in danger—treatment or no. My fetus, on its own, is fine. Technically speaking, there are no abnormalities or anomalies within my fetus. At 22 weeks, it’s fine. Perhaps even at 32 weeks. But every single day that that fetus is in my body, without treatment, it dies.
I don’t want to hear about the precautions not taken that got me in this position. We are already there. Some woman, somewhere is already living these nuances. Now what? Do I petition the government? Who decides my fate? Who foots the bill once the government steps in? Who tells me that I must undergo treatment, that I must put my body through it, that I must buy a product I do not want? Or who tells me I must become a walking tomb to satiate your religious zealotry and bloodlust? Where does this fanatical, absolute regime end and reason and poetry begin?
My doctor. My husband. My daughters. Myself alone, if I so choose. We should be making these decisions. It is not the government’s job. The government isn’t set up to account for individual circumstances, so it should not be in the business of passing sweeping legislations over undeniably critical and nuanced situations. This is why we have a Constitution. This is why we have a Bill of Rights.
Neonatal Hemochromatosis is the monster that fosters life while it takes it away. The very body that would carry and sustain my fetus to birth is that same vessel that would see the same baby drown. At some point in my pregnancy, my body would become life support. The fetus will die, before birth or shortly thereafter. These are the fact of N.H. without treatment. There is no praying or hoping that those facts might change, and that, on its own, as a reason to carry a pregnancy to term, is a religious implication borderlining on violating my freedom of—or FROM—religion.
The government was not there when Boston died. There was no lawmaker present when I signaled to the doctor that it was time, no Senator or Governor spouting off about the sanctity of life. I got to make that call. It is both my daily burden as well as the only gift I was ever able to give my son—letting him go gently into that good night. The government wasn’t there, then, when I pulled the plug on my already born son. How in the actual hell is it okay for it to intrude in the same scenario if my son were still in my womb?
In case you haven’t realized, all these hypothetical situations are deeply troubling to me. I am still grieving my son—my brave, beautiful, sweet, summer boy who comes flickering back to me every time I watch a baseball game, see a lightning bug or BB-8 from The Force Awakens; that amazing little man who should be celebrating his second birthday soon. Any pregnancy befalling me at this point would be so desperately wanted—and so achingly hard. Neonatal Hemochromatosis notwithstanding, there would be no easy outcome. Abortion would be devastating. Treatment would be devastating. No treatment would be devastating. Only one scenario would give us hope for a living infant, and even that treatment, successful as it has been, isn’t foolproof.
Please, please, Citizens, lawmakers, Governors, Americans. Please understand that this abortion issue has been as easy as “adoption or abortion.” It has never been about trite, bloody signs. Abortion is a deep river whose nuances are extreme and limitless and as vast as the multi-faceted face that is Woman. Please stop legislating grieving women into boxes that only contribute to their dying. You don’t know. You never did know. You aren’t equipped to know. You are too big to know.
I am not here to argue about early abortions or those later abortions that aren’t because of medial issues (those I support as well, as I unequivocally support a woman’s right to choose to do whatever she will with her own body). Others have argued those and, again, far better than I ever could. I am only here to speak for myself—one solitary woman—and to advocate for myself, my son, and other women and fetuses like me and mine who do not fall into the neat little spectrum state after state is legislating. N.H. is just one of any given number of diseases that you haven’t accounted for because you have never heard of them. Not being educated is the worst possible place from which to pass laws that have very severe, very immediate, very real, very devastating consequences for real women like me.
The party so concerned with big government’s intrusion into private lives is awful quick to tell me what to do with my womb.
You don’t want to hear my story. You don’t want to face the very real nature of infant mortality. I have heard that since the day Boston died. It is a study in disbelief, though, that, in my experience, those ardently pro-life are those who tend to turn themselves off to any discussion of Boston, telling me to pack up the Boston Box and move on. Whereas those who lean pro-choice are the first to remember him, say his name, ask about him, love me right where I am in my grief.
Because the latter know that there is more to life than living, and there is more to death that an end.
Let’s be real here: the reason I do not fit into these abortion restriction laws is because these laws are passed under false pretense. Lawmakers pandering to the radical pro-life right aren’t really concerned about fetuses, neither are those who claim to be “pro-life.” Those who claim these labels are nothing more than pro-birth. Would the government, after forcing me to carry a dying fetus to term, cover his medical costs, a transplant, his or her funeral? Where does it end? At birth. It ends at birth. Laws such as these are misogyny spray-painted with gold and wrapped with a bow. They look good on the outside, and they sound good on Sunday morning, but the real stories within reek. These laws aren’t about saving babies—they are about restricting women. You aren’t important enough, smart enough, educated enough, man enough to make your own decisions.
You cannot legislate religion and you cannot keep women as second class citizens forever. And that is all this really is.
To my sisters who have had abortion(s): I joy with those of you for whom it was the best choice. And I weep with those who had to make a bitter, heartbreaking decision but for whom abortion was necessary. Don’t let the world tell you that you can’t grieve. To both of you—your reasons, if any there are, are valid.
To the lawmakers: we will not be broken by you. Our grandmothers fought this battle before us, and we will continue the war. Because women are worth it and because, contrary to the dogma surrounding the debate, their fetuses deserve dignity as well.
