Real Life or Why Congress Should Just Shut Up Already

I wasn’t planning on ever discussing this on the blog. Last summer, I vague-blogged about a particularly challenging time during my pregnancy.  I didn’t want to write in too much detail about what I was experiencing because it was so very difficult and personal.  Unfortunately, we still live in a country where for women, so much that is so difficult and personal is often political. People keep thinking they should legislate about these things, in part, because women don’t want to talk about these difficult, personal challenges. It is easy to talk in platitudes when the people negatively affected are silent for justifiable reasons of self-preservation. So politicians have a VERY warped view about the real number of women who are affected by their “pro-life” rhetoric.  Recently, the House of Representatives passed a universal 20-week abortion ban, with a couple of insanely hassling opt-out clauses for rape victims. (Because every rape victim I am sure wants a 48 hour waiting period wherein they must be subjected to “counseling.” Also sidenote, can someone explain to me the logic behind the “waiting period” if time is of the essence in having a legal abortion? It is like they want women to have a 20 week waiting period befor being allowed to have an abortion, but then a ban on abortion after the 20th week.)

Although I considered myself a feminist, based partially on my own religious background, I generally have been ambivalent towards abortion issues.  I considered myself nominally pro-choice, but never thought to much about what that meant or how women are affected by these issues.  It probably doesn’t seem logical that someone who has spent several years in a battle with infertility would have, during that time, come to understand the need for choice in a more personal and real way.  I blogged a few years ago about an early suspected ectopic pregnancy (my first pregnancy) that had to be terminated with methotrexate. That experience was the first that made me realize that these real decisions that women face are not as straightforward as people simply espousing pro-life dogma would have others belief and as a result, I wanted to be more empathetic and understanding of women who have to make difficult choices about their lives.

Last summer was truly moment in time when I realized how it possibly would feel to make these agonizing decisions later on in the second trimester of pregnancy. Pro-life politicians would have you believe that at 20 weeks of pregnancy, fetuses are nearly viable and can feel pain. Most medical research dispute the pain claim, but 100% of doctors will tell you no fetus is viable at 20 weeks. Although it is possible at 22 weeks that a handful of babies born may survive, most experts do not consider viability until 24 weeks, and even then many babies will die and most who survive will have lifelong disabilities from being born that early. I know the statistics because last year when I was pregnant, I insanely tracked week by week survival rates and long term effect rates for premature babies because I was carrying twins.

But the reality is, for women who are considering second trimester abortions, it has nothing to do with statistics. The large majority of women who are considering abortion after 20 weeks are doing so because of severe fetal abnormalities. Most of these abnormalities cannot be detected until later in the second trimester.

Everyone is entitled to their own opinion about what they would do in this situation. But that is just it; it is YOUR OWN opinion about what YOU would do, not what someone else should do. This became very real to me last summer, when one day shy of hitting 12 weeks of pregnancy at our Nuchal Translucency screening, we were told one of the much wanted fetuses in my belly had a cystic hygroma measuring 5.8 mm. We were told that with that measurement, it was more than 2/3 likely that one of our babies had a severe, chromosomal defect. It also put that fetus at a higher risk for other birth defects and a higher risk for spontaneous miscarriage.  When the doctor delivered the devastating news that day (and the doctor who delivered the news did it in a completely unempathetic, shock-provoking way, meaning when going to the MFM appointments from that point forward, I always made sure she wasn’t the doctor I would have to see), I broke down entirely.  It was unexpected. Immediately, that day they did a follow-up blood test that was over 90% accurate in determining the three most common types of chromosomal abnormalities – trisonomy 13, 18, 21. We would have the results in a week.  I also would schedule a CVS (chronic villus sampling) test.  We received this news the day before I was leaving to go spend a week in Mississippi with my family. It was a lot to process.

The days that followed were awful. I couldn’t get out of bed some mornings. I cried uncontrollably. I was terrified.  I kept thinking that I had this one fetus that was potentially a ticking time bomb, that carried the potential to take the other seemingly healthy fetus down with it.  That was also something I had to consider, as I had two little ones growing inside of me. I digested study after study, all that seemed to indicate carrying one karyotypically normal fetus on own karyotypically abnormal fetus would be the risk of spontaneous abortion much higher, potentially resulting in the loss of both fetuses.  I also imagined what it would be like to carry both babies to term only to have one baby with severe birth defects that would take all of my time and energy and I wouldn’t have enough left in the tank to parent the other one. I also thought to myself, I have no paid maternity leave. How could I make this work? All of the potential scenarios and outcomes ran through my brain leaving me terrified and exhausted emotionally. I didn’t see how I could cope.

Those days were probably some of the worst of my life, if not the worst; worse than coping with the ectopic pregnancy; worse than the other miscarriages. They were so terrible because these fetuses had made it far enough for me to sense their living potential in a way that I had to grieve with the possible loss of that potential as well as what it would practically mean if there were serious birth defects.  I have never been so grateful for my family and the few close friends who saw me through those days of grief, letting me know they would support me and whatever I chose regardless of outcome. This was really important to me because not everyone in my life agreed with me as I worked through possibilities and choices. There was conflict that only made those days more painful for me as I realized that potential decisions would result in irretrievably broken relationships in some instances. In those days, I concluded that I could never, would never tell someone else to do in a situation like this.  It would never be my place to tell someone else what they could or couldn’t handle. It would never be my place to tell someone else that based on their own experiences that they were making the right or wrong decision.

As the days slipped by, I charted out when I would know more information in terms of the time I had left according to North Carolina state law to consider selective reduction as an option. North Carolina, you see is a state where abortion is banned after 20 weeks. I had up until the day the fetuses were 21 weeks according to my due date.  The blood tests results came back one week after that initial dreadful day while I was still in Mississippi.  They were negative for chromosomal defects, but because they were not failproof (and with carrying twins, they have a somewhat higher failure to detect rate), I scheduled the CVS for the first day when I was back in North Carolina when I would be 13 weeks and 2 days pregnant.

On the day of my CVS, I showed up to the MFM clinic and first sat while the ultrasound tech and the doctor reconfirmed the presence of the cystic hygroma. They then continued scanning my belly to look for a way they could get the needle for the CVS to the placenta without having to cross the amniotic fluid for the twin who needed the procedure. They couldn’t find one. An hour later, after talking to the doctor, we were walking out of the clinic because the conclusion was that the CVS couldn’t successfully be performed without increasing my risk of a spontaneous miscarriage. The placenta for the twin was simply not in a good place.  The other twin was on top. There was too much amniotic fluid. In any case, we were once again on the clock waiting, as now we had to wait for another few weeks for when an amniocentesis could safely be performed.  So we had more agonizing weeks of waiting.

In the fifteenth week of pregnancy, it was now safe enough to perform the amniocentesis. The accompanying ultrasound confirmed the continuing presence of the cystic hygroma.  Two days later we received the initial results regarding the three most common chromosomal abnormalities, confirming that there was no trisonomy 13, 18, or 21. Then, we had to wait two agonizing weeks again for the results of the microarray testing, a more complex genetic test that looked forup to 200 other chromosomal and genetic abnormalities (not: none of these tests come cheap, but fortunately, my crappy state health plan insurance did cover these).  It was only after the microarray testing came back without having identified any genetic problems, that I finally began to breathe a sigh of relief. Certainly, with a cystic hygroma still present, we were not out of the woods as there could be other birth defects, like a heart defect or Noonan Syndrome. Those were not issues though, that I felt like would warrant me considering selective reduction. We ruled out Noonan syndrome with another genetic test in the 18th week of pregnancy. It wasn’t until the 20th week that a fetal echocardiogram could be completed where it appeared likely that particular fetus’s heart was performing well. It was also during that 20th week that we were finally able to do a more complete anatomy scan of both fetus’s to rule out other major birth defects. That was the week that our time would have been up. Could you imagine what it would have been like to have discovered something significant during that week, something that could have potentially put the other healthy fetus at risk and then have to make an immediate decision about what to do? I could not. It is too devastating for me to even contemplate, because I know how terrible it is to have to consider such things.

My point for all of this rambling is that all of these stupid Representatives that are so flippant about a 20 week ban have no clue what it is like to be in a position where you are considering a termination of pregnancy in the second trimester. They have no clue what it is like to be a woman trying to imagine what it would be like to have to deliver a child that you know is not going to survive birth or infancy. They have no clue what kind of strain it puts on someone who is also thinking, wow, I have a job, I have NO paid maternity leave, and now I might have an infant who needs round the clock care, and I have to be sad thinking about what kind of quality of life that infant might have and whether I can afford the kind of that infant will need, and whether I can be a parent to that child and also parent another child who also needs me, and whether the fact that one fetus has severe defects puts another healthy fetus at risk of early labor which could in turn subject that child to a lifelong disability or health issue by virtue of being born severely premature, etc. They have no clue. They just get to claim some kind of FALSE statement about fetal pain and then subject real people and real families to a lot of sadness and grief because they think they know more than them and they never have to deal with the real world effects of their flippancy in the name of scoring cheap political points. It is very, very upsetting to me.

In looking back on my experience, I wouldn’t want anyone to live through that. I cannot tell you how every day of this experience after being initially thrust into despair with the first bad news, my heart slowly was lifted back up with each positive test result. The day the ultrasound tech no longer spotted the hygroma on the ultrasound, was so happy. The fact that I have two healthy boys makes me so, so happy. I feel so lucky, because I know that statistics and odds are real. Some people don’t get the good news. With our initial bad news, we were in the minority of those who did get the good news. I can imagine how it feels to ultimately get bad news. I had planned for its possibility in my mind. I wanted my babies so badly, we spent tens of thousands of dollars to get them. These in no way were unwanted. Yet, I can understand why people would chose to terminate pregnancies in the second trimester. I was there. If the results had been different for me, I would have faced difficult choices, but I would have made them with no regard for what some stupid politician thought about me.

So Congress, I know asking your members to be empathetic to anyone other than the plight of billionaires like the Koch brothers might be asking too much, but just for a moment, admit that you stepped to far here. Admit that life is more complicated than your simplistic, one-size fits all 20 week ban could possibly fit. Don’t bring more sadness on people who are already in despair. Let that woman choose what is best for her and her family. I promise you, her choice will be the best for all of us. I am talking about this, because you should realize that these policies affect real people in really significant ways.

And finally, a word of thanks to all of the good doctors we had who kept us apprised of our options and kept us informed along the way. These were the only outsiders that I wanted weighing in during this time in my life. Without their compassionate care, I don’t know how I would have coped either.

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2 thoughts on “Real Life or Why Congress Should Just Shut Up Already

  1. Wow! What an experience! I cannot imagine! Thank you so much for sharing and for nailing on the head what I have always believed that this is a deeply personal issue that cannot be appropriately legislated!

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