Been Sitting Much Too Long

Been Sitting Much Too Long

2016-10-20 Been Sitting Much Too Long

Stand. You’ve been sitting much too long. -Sly and the Family Stone

For Evelyn.

On a national stage, it was said last night: “I have met with women who have, toward the end of their pregnancy, got the worst news one can get. That their health is in jeopardy if they continue to carry to term. Or that something terrible has happened or just been discovered about the pregnancy. I do not think the United States government should be stepping in and making those most personal of decisions.

A few moments later, I read an interview with a woman who needed to end her pregnancy at 32 weeks. She knew at 20 weeks that there were some issues with her son, but she and her husband chose to proceed with their pregnancy. She had ultrasounds every two weeks, and more concerning news, but they continued. At 32 weeks she was told that her son could not swallow. He could never take a breath, assigned medical terminology of “incompatible with life.” Because of some of her own health issues, it was dangerous for her to carry him to term and deliver. At that point, she had to fly to Colorado, where it was legal to obtain a shot to stop her son’s heartbeat. The shot cost $10,000 – cash only. The clinic was enveloped in bulletproof glass. Then had to get back on a plane, knowing her son was no longer living, to return to her home state of New York where labor could be induced. They had not given a name to their son yet, only calling him Spartacus.

Reading the story was agonizing. Her labor lasted more than 24 hours. Her epidural did not work. At the end, the placenta wouldn’t detach and she had to have a D&C. After, she was lactating and had to suppress the milk. Postpartum bleeding for weeks. All of the same horrors, horrors, that I also endured. There are absolutely no words to describe the physical and emotional torture of delivering a baby that is already gone. It is haunting, a scenario that warrants the ultimate compassion and tenderness. The woman said that she felt such shame, that she could not even tell people that they had decided to end her son’s life; she only said “we lost the baby.”

In my grief writing group earlier this year, I met a woman who had also lost her daughter at 21 weeks, exactly the same gestational age as when I lost Nelle. Her 20 week ultrasound also revealed a medical condition that was incompatible with life: her daughter had skeletal dysplasia, but a type where she was so disfigured that her lungs would never develop. She would never take a breath. It was also likely that her daughter would die in utero, at any point in the second half of her pregnancy. She also felt shame at making the decision to end her daughter’s life, even though there was nothing that could have been done to save it.  Later, she told me that her state of Pennsylvania was considering legislation that would restrict terminating pregnancies after 20 weeks, even for medical reasons like hers. She had only found out at her 20-week ultrasound that there was even an issue, and by that time it would have been too late if the legislation had passed. She wrote a letter to the editor of the paper, sharing her daughter’s story, to try to persuade lawmakers of the impact of such legislation. Just yesterday, she shared her story with a much larger audience.  Her daughter’s name was Evelyn.

In addition to reliving the worst moments of induced labor and delivery, twice, I remembered the only restrictions that I found out the hard way in my own pregnancies. We already knew that she was growth-restricted and that “something” was wrong, but we did not know exactly what. The doctor told me at the ultrasound appointment that we would likely want to have an amniocentesis done right away, and schedule a follow-up ultrasound to monitor growth, informing us at that point that Illinois would only allow us to terminate up to 24 weeks. I was taken aback, because I was already 19 weeks and had just received the information that something was terribly wrong and test results could take some time to come back. Flash forward ten days, to the moment when Ger met me at the hospital after I had called him to tell him that Nelle had no heartbeat. As I collapsed in sobs in Ger’s arms, he said to me, quietly: “She made a decision for us, so we didn’t have to.”

We had been agonizing over what we might do, depending on what we would learn about whatever underlying issue was causing the growth restriction; at that point it was pure speculation, but we had to at least have the discussion: what would we do? The discussion was never finished, because then she was gone. Faced with the decision, I would likely only be able to tell people what these other women had said “we lost the baby” with no further explanation. I don’t deserve to feel shame over the choice we were facing, and whatever decision we would have made. We should have been able to make what would have been the hardest decision of our lives without fear of what other people in our lives may have thought, or felt like I had to hide it from them. We were, perhaps mercifully, spared that decision.

I lost Iris at 16 weeks and as my OBGYN walked me from the exam room down to Maternal Fetal Medicine to confirm no heartbeat, I had to ask, in a dull, pragmatic way about logistics: what will happen now? Because of not being quite as far along as last time, I had two choices: labor and delivery, again. Or a D&E. But they did not do D&E procedures at their hospital, so I would have to call a hospital in Chicago. It was late afternoon on a Friday, and Monday was a holiday, so the earliest I could likely get in would be Wednesday. I would need to wait days, carrying a dead baby, for the option of a simpler procedure. When the Maternal Fetal Medicine doctor, a woman, confirmed this for me, and I was alone, since Ger had not arrived yet, I remember asking her: “What would you do – delivery, or wait for a D&E?” She looked at me, uncomfortable and awkward, and said that she did not know. I chose the much more involved procedure of labor and delivery again, to have it be over.

Hearing the stories of women brave enough to talk makes me even braver and more convicted: that women have a right to that decision. It is, as was said last night, likely the worst decisions of their lives. And the decision is only the first step; then they likely have no idea what is coming in terms of physical torment for the next few days. There should be no barriers in access to that decision, and the necessary medical care, and the opinions of others. Stigma is attached to the worst moment in their lives, forcing them to live and relive it in silence, rather than in support and compassion. It is so easy to pass judgment when you don’t see a face, when you don’t know the story, and you don’t know the anguish. I am putting myself out there as a face of someone who was staring directly at that decision.

Anguish deserves to be heard.

2016-10-20 Been Sitting Much Too Long