Having a Child with an Adverse Fetal Diagnosis: A Personal Testimony

by Sarah St. Onge Connors

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When the editors of Life Matters Journal reached out to me and offered to let me tell my story here, I immediately accepted the challenge because I believe so deeply in what Rehumanize has to say about how we all treat one another. I’m probably the last person my friends and family would expect to be writing for a progressive journal. My politics are most definitely right-of-center and I actively work to have conservative representation in my local government.

Yet here I am.

Because in 2010 I delivered a baby who only lived for one hour and forty-seven minutes. She survived just long enough to make an indelible impact on the world, however, an hour and forty-seven minutes isn’t considered a life worth living by many on both ends of the political spectrum.

Some background:

Before she was born, we knew our daughter was most likely going to die. We also knew there were problems much earlier than most parents who receive a poor prenatal diagnosis. At only nine weeks gestation she’d already suffered a cataclysmic accident, her olive-sized body essentially split in half. We saw it happening in real time on an ultrasound screen: her tiny form completely engulfed in a bubble of fluid called hydrops—a name which sounds more like a children’s sweet than a medical ailment. I didn’t know babies could have the equivalent of strokes while in the womb, especially when they had barely begun to form. Because the damage looked so widespread I was sent home to miscarry… but my daughter miraculously survived. As she developed, however, it became apparent her abdominal organs were growing outside of her body, and by 16 weeks doctors determined her sacral bone was also positioned in such a way as to leave her paralyzed below the waist. Sixteen weeks was the first time they used the term “incompatible with life”, and the fourth time I was offered an abortion, if you count the initial offer of a D&C when my doctor believed I was in the process of suffering a miscarriage.

I said no. Every time.

It took a further 9 weeks for doctors to officially name what ailed my daughter: limb body wall complex (LBWC). Universally lethal. One of the defect complexes most commonly used in arguments in favor of termination for medical reasons. LBWC is basically a disruption in the embryonic folding process at the point where the umbilical cord forms, and is generally catastrophic. The cause is unknown and there is no cure for it, and very few survivors. My daughter had the bare minimum of requirements to fit into this category of midline defect, and because I have a life-long history of both living and working with atypical humans, what doctors saw as insurmountable obstacles I saw as potential challenges. While doctors attempted to coerce me into having abortion I researched stories of survivors. When they laughed at me and told me I was tenacious for my course of study, I sought out new doctors.

Through my entire pregnancy I was pressured to end my daughter’s life. I resisted. At every doctor’s appointment I was offered the option to terminate. I said no. I asked to have a note put into my chart acknowledging I had already been offered an abortion and declined it, but I was told, “We can’t do that, because it’s part of informed consent.” I was never offered support to

continue my pregnancy as part of that informed consent.

Not only did I resist abortion, but I repeatedly begged for interventions which would potentially save my daughter’s life.

A C-section to ensure she experienced the least trauma during delivery was denied: “I’m not cutting open a perfectly healthy uterus for a baby who’s just going to die.”

When I asked to be put on bed rest, I was told they weren’t going to do that: “You most likely will deliver prematurely, and there’s really no point in trying to extend the pregnancy any longer than its natural course”.

When I noted I was starting to show signs of labor, and asked to have some sort of treatment to stop it, I was told: “You’re not heading into labor” (I delivered her less than 48 hours after that appointment).

When in the hospital preparing to birth her, I asked for steroid shots—a standard treatment for preemies and babies who are expected to have lung issues. I was told, “We don’t do that for babies who are going to die.”

In December 2010, my Beatrix was born.

And then she did die, just like they’d all predicted.

I tried my very hardest to save my daughter’s life, but all of my trying wasn’t enough. Whether she would have survived if they’d done all that I asked is up for debate. (Four years after she was born, another sweet girl with LBWC that manifested similar to my daughter was born and survived. She is happy and thriving despite medical challenges.) What isn’t up for debate is the fact that the medical professionals’ attitude of dismissal ensured she wouldn’t.

Before this pregnancy, I myself believed in exceptions to anti-abortion laws. I didn’t necessarily consider myself 100% pro-life until I was faced with my exceptional daughter and others’ resistance to medically treating her.

Even after she died I had no intention of becoming a pro-life advocate. I was just trying to survive the overpowering grief I was experiencing. I still didn’t think it was my place to try and tell anyone else what they should do. I didn’t feel like I was “allowed” to advocate against termination for medical reasons. I believed that our treatment by the medical establishment was

an anomaly because her disorder was too rare for them to take me seriously. But something which had been previously a gray area suddenly wasn’t, and as I grew in healing after Beatrix’s death, I began to notice other moms who were also being given substandard medical care. To be clear: what was happening was medically sound, in terms of current, accepted treatments. I am not accusing individual physicians of negligence. It’s the legal and medical system which is failing miserably in its duty to families.

And this made me angry. Furious, in fact. So I started writing. And the more I wrote the more frustrated I became, because no one seemed to be paying attention to the fact that even in the most pro-life states, with the most pro-life legislators, women were still having to fight to get treatment for their critically ill children.

For example, in almost every deliriously celebrated anti-abortion law we’ve seen come out in the last year, there is an exception for “lethal” anomalies. The laws which pro-life groups tout as “exceptionless” often contain very specific exceptions for babies who are not expected to live for very long after birth.

When unborn babies are declared less than human in pro-life laws something has gone terribly wrong. Killing people because we’ve lost hope in curing them isn’t merciful. It’s barbaric—and I mean that in the most literal sense of the word: it’s activity related to primitive people too ignorant to behave in a civilized manner. When we decide these children aren’t to be legally protected, it dehumanizes them. There is no such thing as an unsalvageable person.

Children with trisomies 13 and 18 are particularly vulnerable to lethal medical bias, which is especially troubling since treatments have evolved to improve the quality and length of life for these children and their families. Of note is the fact that medical journals and professionals still routinely refer to these diagnoses as “incompatible with life”.

So this is where I believe we can all work together. This is where Left meets Right.

Because—

It is not a conservative or progressive value to believe all people should be treated with dignity regardless of their race, nation of origin, political or religious beliefs, or station in life. It is not a conservative or progressive value to believe all people should be protected from violence regardless of their intellectual or physical abilities.

And it is certainly not a conservative or progressive value to desire the end of state-sanctioned killing of vulnerable, voiceless humans.

However, when speaking to other conservatives I’m often accused of being too soft, not pragmatic enough, or an idealist because my suggested solutions many times center around community-based initiatives to solve problems.

On the other hand, when speaking with my progressive friends and family, I’m viewed as cold-hearted because I believe private enterprise and voluntaryism will almost always work better than a government solution.

The truth is I’m just a human being who sees beauty in all types of people and wants everyone to have a chance to live their life to the fullest extent they are capable of—both the baby who has all her parts in the right places and one whose parts are all in pieces have a life with value. This is something we can all agree on, work together on, and in the process of working together maybe come to some agreement about how to right the injustices we see.

When doctors decided not to try and save my daughter’s life, they interfered in a potential miracle. When we seek to “help” women by allowing them to take the lives of their children in difficult situations, we’re interfering in potential miracles. The paradigm shift will only come when we wake up in the morning and think, “Who am I going to love unconditionally today?”, because unconditional love is the ultimate miracle. For me it’s the same answer every day: I’m loving my sweet Beatrix, who the rest of the world saw not as a baby but a medical oddity. Just like with her, I don’t ask what the cost will be, and I soldier on when everything seems to be dead set against me.

Sometimes the gaps between political ideals seem insurmountable, but if I’ve learned anything over the last nine years, it’s that miracles can occur if we let them… and conversely, when we stand in their way, precious things can be lost.

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This article originally appeared in Volume 7 Issue 4 of Life Matters Journal.

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