Welcome, Washington Post and Chicago Tribune readers!

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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: 

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

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    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

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    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.

     

     

    Kadie Tannehill's Story

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    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.