Why Missouri's Abortion Consents and Timeline Are a Big Deal

There have been some really great comments on my Washington Post Op Ed. Even ones that I don't necessarily agree with have been very thought provoking for me. For instance, this one from Yellow Lab (who, as a side note, has an adorable picture of his/her dog in the icon):

"I'm sorry that this happened to you and your husband. I'm sure it was awful.  
 
But I guess I don't understand how waiting three days for an abortion was beyond the pale, considering that it might have taken that long to schedule it anyway. 
 
Nor do I understand how acknowledging that you have heard the heartbeat and had an ultrasound, when you had already done those things, was so traumatic. Or that being handed "a packet" of literature was so terrible. 
 
There are always some sort of protocols with any procedure. I'm unclear as to why those were so outrageous."

The comments go on to discuss how all medical procedures involve paperwork, consents, etc. including (again from Yellow Lab):

"But there's no way on earth you have any procedure in a hospital without signing some paperwork, acknowledging risks, and being inconvenienced. That's just the way it is."

Yellow Lab, if you see this, thank you for taking the time to comment on my story, and for doing so thoughtfully. I appreciate that your response wasn't a rash one, and wasn't judgmental.

There are few things to unpack here. 

• I think there has been a major misunderstanding. The paperwork that we had to fill out was not at a hospital, and it was not the typical medical consents you sign before any major medical procedure. 

The heartbeat, ultrasound and informed consent packets are 100% not official medical documentation. It is instead legal, politically-driven paperwork written by politicians, not doctors. In fact, there is blatantly misleading and inaccurate information in the Informed Consent packet.

No other procedure I have ever had to do involved this. I have no issues with medical consents, and signed many at the hospital where we had the termination. I have enormous issues with politically-motivated, ill-informed, legally-required consents. All families deserve to make their decisions with accurate, unbiased information about all aspects of the issue. We weren't given a packet describing the risks a mother incurs just by being pregnant, for instance (and they absolutely exist). It was all from the anti-abortion stance.

• Additionally, there are no exceptions in this process for those with a fetal anomaly. I won't get into a debate about whether anyone ever deserves this today, but we were nearly 6 months pregnant. We had worked very, very hard to be pregnant with Grace. Her fatal fetal anomaly diagnosis was utterly devastating to us. Yet there aren't exceptions in the law for people like us. To say they were tone deaf would be an understatement. They were utterly inappropriate and cruel for our situation. The law either wasn't made with all factors considered, or is even more callous than I originally thought. I'm not sure which is worse.

• Regarding the 72 hour waiting period: what if we had been told Grace had a 1% chance to make it? A 5% chance? 10%? Because of Grace's 100% fatal diagnosis, we decided immediately that termination was our only option, but others might not have made the decision the way we did, and that's totally ok too. What if it wasn't that case that her diagnosis was 100% fatal? We would have wanted to have time to consider what to do, learn about her potential quality of life,  learn about my own personal risks by continuing the pregnancy, discuss with one another as spouses and her parents, consult our higher power, and all of the other things that go into making a terribly difficult decision. All while being in utter shock and a fog of grief. That last one is hard to articulate in how powerful it is. I'd argue our quick decision is likely rare in this situation, and people deserve to have as much time as they need.

Ironically, the time limit forced us to act quickly instead of giving us all the time we might have wanted to make a decision of such gravity. Missouri limits abortion to 21 weeks, 6 days, and due to the 72 hours we terminated at 21 weeks 5 days. An anatomy scan is done between 18 and 22 weeks (Grace's was done at 20 weeks, 6 days), and insurance can be particular about how they cover anatomy scans and when. It puts families between a rock and a hard place. 

And what about people that find a health issue later in pregnancy? We were lucky we learned about Grace's early enough to terminate in the state we have always lived in, paid taxes in, etc.. Others learn about issues far later in their pregnancy and it doesn't make them any less fatal. The idea that there is a time limit on termination for medical reasons is incongruous with the actual experience and risks of pregnancy. 

Agree or disagree? Have questions? Thoughts? Comments? Please feel free to comment below or send me a message via the Contact Form!

Welcome, Washington Post and Chicago Tribune readers!

Thank you so, so much to everyone that's visiting our page.

Most are coming with messages of love and compassion and I couldn't be more grateful, humbled and appreciative.

But if you're here because you disagree, or aren't sure how you feel about our story, that's ok too. I just ask that you be curious and open minded. I may not convince you, and that's ok. I just want us to treat each other like humans and to learn from each other. We're real people. Not just words coming across your screen. Just like you're a real person too. 

On that note, this is us: 

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A little about us: Jim and I have been together for 8 years, and have been married for 6. We love riding bikes, our two spoiled cats (Elliot and Biloxi, the latter a Hurricane Katrina foster kitten that I ended up keeping and who now rules the household). We also love our friends and family, and music (Jim actually works in the music industry). In fact, we had a dance party of songs that Jim had always wanted to teach Grace about the night before her termination as a way to celebrate her far-to-brief life, and say goodbye. I'll share the playlist soon. We couldn't wait to raise our baby girl to explore music, reading and travel, and to just see how her personality revealed itself.

I'll be posting more blogs in the coming days talking about some comments I'm seeing (for example, noting that I call Grace a baby in my Op Ed, and what my stance is on that) and so on. But for now I wanted to share a little bit more about ourselves.

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Our Story in the Washington Post

Our story has been published in the Washington Post as an Opinion Piece. You can see it here.

Please share our story. 

It's okay to not know how you feel about our story, and still share it.  It's okay to say that too. It's okay to share it and not add any commentary to it. We know we'll face criticism from some for the choice we made, but it's our sincere hope that we can shed some light on the gray area situations that exist around abortion.

Men, too, please share our story. Historically, men have shared our story very little, for reasons I haven't quite figured out yet. I'll likely do a blog post about that in the future and would love kind feedback and perspectives. But the fact of the matter is Conservative men do not hesitate to speak their minds and propose and pass legal restrictions around our options without considering or including stories like ours. We need male allies to speak up with us. 

Thank you so much for your consideration of our story. 

About Grace's Disease

I will be doing a separate post about what it was like to learn that our daughter had a fatal disease, but I wanted to talk a little bit about the disease, who it affects, and why it's fatal.

When we went in for Grace's 21 week anatomy scan, the ultrasound technician told us that her kidneys were huge and full of cysts (which look like black dots on the screen). She had no amniotic fluid around her (which is what makes the background of an ultrasound black), and she was curled up so tightly because of the lack of fluid that they couldn't see her feet.

Grace was diagnosed with a disease called Multicystic Dysplastic Kidney Disease. In her case, it affected both of her kidneys, meaning it was bilateral (instead of affecting just one kidney, which is called unilateral and is possibly survivable).

Essentially, amniotic fluid is urine that babies swallow and then urinate back out. In MDK,  something, perhaps a blocked bladder duct, backs the amniotic fluid into the kidneys, and they become enlarged and full of cysts. There is no way to fix it. Without amniotic fluid the baby's lungs will not develop. It's 100% fatal in cases like ours, where it hits both kidneys and so early before any lung development can happen (which occurs in the third trimester.)

The specialist that we saw next confirmed my OB's diagnosis, and explained it in even more detail. They found Grace's feet, but she was curled up so tightly because of the lack of amniotic fluid, there was a decent chance she'd be stillborn, or suffer from Potter's Sequence. The bottom line was that she would be possibly ok until birth due to her placenta, but upon birth "the wheels would immediately come off." Without her placenta to support her, Grace would need her lungs. And because her lungs would not be developed without amniotic fluid, and she'd need to immediately go onto life support. Her kidneys were already 100% non-functioning and she'd need a transplant. Babies need to be around 22 lb to receive a transplant, and no baby yet has made it to that weight without working lungs/in a NICU, according to our doctors.

MDK is hard to track in terms of how often it affects babies, however, I have heard it hits the way it did Grace (bilaterally, early) around 1/10,000. My friend Jessica Costanzo's son suffered from the same disease and she writes about it and her family's heartbreaking decision here.

I share all of this to make it clear that:

1. Grace absolutely, 100% would not have survived long term. The pathology report after her termination confirmed this, which was both heartbreaking and a small relief that we'd made the right choice, in our opinions, for her. If we were going to potentially have to remove her from life support shortly after birth anyway, we felt strongly we wanted to do that in pregnancy before she suffered needlessly at full term, with a more developed nervous system.

2. This happens far more often than anyone might think. It will happen again to families, and because it might have genetic ties, could even happen to us again if we continue trying to have a child. We need to have legal rights to work around cases like these.

Rachel Goldberg's Story

Rachel Goldberg of Southwest Missouri had to travel to Boulder, CO to terminate for medical reasons. Please read and share her story, which can be found here.

Kadie Tannehill's Story

Kadie Tannehill shared her story on St. Louis On The Air after terminating her very-wanted pregnancy in the state of Missouri. You can read all about her experience here, as well as listen to the segment.

Just more proof that more families than you would ever think have to make these heartbreaking choices, and gives a peak into what we're all up against legislatively.

Sometimes I really feel like more people just need to know what happened to us and people like Kadie, and they'd back off. Other times I worry that even if people understood they wouldn't care. It's a shame beacuse our babies that would ultimately suffer the biggest price.