Jim and I didn't even realize that's not what we were getting at first when the scan started. There was no black background in our ultrasound, but maybe that was normal? I knew babies sometimes didn't cooperate in ultrasounds and you had to go back a few weeks later to confirm sex, for instance. It took our technician saying our daughter didn't have a lot of amniotic fluid (and thus the lack of black background) and that her kidneys were large to clue us in that something was wrong. I turned on my side to hopefully get Grace to move to a better position for a better shot while the technician talked to our doctor. That didn't help though, and after another attempt at scanning her, the technician sent us to see our doctor with the comment 'I know this isn't what you want to hear.'
I wasn't even sure. I had heard of low amniotic fluid before... what did it mean exactly? Maybe this could be treatable and okay? On the walk to the exam room to talk to my doctor, I quickly texted two of my best friends which triggered an information gathering session from them while I did my own quick Google and saw 80-90% of the time that there is low amniotic fluid in the second trimester, it's fatal. It still didn't sink in, but I grew more and more nervous. Surely this wouldn't happen to us again after having had a miscarriage in the past and 4 years of infertility and having done IVF with a preimplementation genetic screened embryo... right? We had been told after 10 weeks that there was only a 1% chance of something being wrong. Surely this was treatable and just a complication.
I didn't find ease in introducing my OB to Jim and having her tell him to call her by her first name. She touched my knee tenderly as she explained our daughter had enlarged kidneys full of fluid filled cysts, no amniotic fluid, and was curled up so tightly already from the lack of fluid they couldn't see her feet in the ultrasound. She wanted to send us upstairs for a high tech ultrasound to make sure of her diagnosis. Jim silently cried and people kept poking their heads into the room to whisper things to my doctor and one finally produced a post it note with appointment information for the high tech ultrasound for an hour later. I asked what we could do and she said you can't just transplant more amniotic fluid in - that the kidneys would just stop it again... and that there wasn't much we could do. At that second, I felt like I was placed in a hellish rollercoaster and the lap bar came down locking me into place. This was my nightmare. And it was really happening. To us. There was no escape hatch... I just was going to have to ride it out. I still am.
It's a bit of a blur from there. I remember walking out the side exit to avoid seeing pregnant women in the waiting room and to spare them my grim, shallow breathing and tears. I remember walking by the break room on the way out and seeing a sheet cake to celebrate someone's birthday, which surely I would normally joke about stealing a piece from any other time. The fact that we were being ushered out a side door, walking through the personal lives of our medical professionals made it all the more real while simultaneously increasing my disbelief. We got outside and I remember it being an unusually warm, sunny day for mid-November in Missouri. A woman was sitting on a bench smoking and I wanted to scream at her to get lost and give us privacy, which of course made no sense. I called my parents who I had excitedly texted on the way to the appointment. My mom excitedly asked "how was it!?" and I choked out 'not good', and I will never forget my mom dropping the phone on the ground and sobbing loudly in the background. My dad picked it up and did one of the things he does best: he said he was coming to be with us as support and managed to get location and directions, leaving immediately.
We nibbled at some lunch, and I marveled at how many pregnant women were around. I expected plenty at a hospital, but not the number of doctors that were pregnant too. They were everywhere. I updated a Facebook infertility group I'm a part of with what had happened, and that we were waiting for a follow up ultrasound to confirm the diagnosis, and that we didn't think our pregnancy would get to continue. The outpouring of love, support and heartsickness from my peers both brought me additional tears of gratitude and an additional sadness: because I'd have less in common with most of them soon... only a few had had this situation happen to their pregnancies. For most, finally becoming pregnant and clearing the first trimester meant they finally got their take home baby. I felt very alone. They scooped me up from their corners of the earth nonetheless, even though my situation possibly made them more nervous about their own pregnancies and brought about sad memories for them.
My dad arrived and hugged us both very tightly, and we went in for the confirmation ultrasound. I remember the tech being warm and thorough, with the second, more high-tech ultrasound being over an hour long. She tenderly showed us all of Grace's anatomy, including her healthy brain and spine, and finally found her feet. I remember feeling like if so much was perfectly ok with her, why did her kidneys have to end her life? Jim and my dad sat nearby in the dark room, doing what we always do in times of deep distress: Jim silently cataloging information and my dad asking smart questions, making friendly conversation, and dropping a joke in for levity whenever anywhere near appropriate.
The doctor came in and reviewed the findings and asked what my OB had told me. I repeated back that our daughter's kidneys were full of fluid cysts, were huge and that she had no amniotic fluid, and without that her lungs would never develop. The doctor said my OB was right, and that she had Bilateral Multicystic Dysplastic Kidney Disease. Because it affected both kidneys, there was no treatment.
The doctor explained that there were a few options (terminate the pregnancy or continue to carry her) and if we did the latter, 2 potential outcomes: 1) Grace would be stillborn after having been crushed to death by the weight of my body. A slow death growing more difficult for her by the day as she developed more and her ability to feel pain developed early in the third trimester (around 24-28 weeks, and we were at 21 weeks). 2) She would be born and then immediately, upon losing her connection to the placenta, the 'wheels would come off'. Without functioning lungs, she would die within minutes or be put on life support which would just prolong the inevitable: to get the necessary kidney transplant, babies need to be around 22 lb, and none thrive enough without working lungs or kidneys to make it that far.
My dad asked, very directly, what the odds of survival were for Grace, should we continue to carry the pregnancy. The doctor replied, none. That if she made it, our daughter would be the first to survive this situation.
Our doctor left to give us time to process this. I cried and cried and alternated between hugging my dad and Jim, both whom were crying as well. Jim and I looked at each and both said we had to terminate - that carrying her to let her experience such pain was cruel to her. My dad, raised Catholic, said it was up to us, but he thought we were doing the right thing, which brought me comfort.
The doctor came back in and asked if we had needed to go home to decide but advised us that we had little time being 20 weeks, 6 days pregnant, which was my first clue that we were facing legal hurdles that didn't have exceptions for our situation. When we said we had decided to terminate the pregnancy, she said she hadn't wanted to sway our decision, but since we had decided, she would share that my own risk would have gone up 7 times if I had continued the pregnancy.
We were told that we would receive a call to schedule filling out consent forms and scheduling the procedure. I checked my phone to a text from my friend Laura (who I had texted earlier and sent on the google hunt) asking what had happened, saying her heart was in her throat. I had to text 'we have to terminate' for the first time, which still brings tears to my eyes today, both in my sadness at what our best option was and how generously my friends walked into the dark situation with us. I called my oldest friend on the way to my parents' (where we went next) and she cried with me.
When we got back to my parents' house my mom clung to me and stroked my hair and cheeks. Jim called his parents and told them, as well as a nun who is an old mentor and friend of his after going to a Jesuit college and having her as a transformative teacher. All supported us and offered comfort and love in the coming days. I got the call to plan signing the consents and got my second peek into the jungle of cruel red tape awaiting us: "you need to get in here tomorrow to sign these because you're running out of time. You legally can't do it after 21 weeks 6 days and you have to wait 72 hours after signing the consents." And "insurance almost never covers this because of the Hyde Amendment" and "no, there are no exceptions because of a fetal anomaly". Even with all of these comments, I still could have never prepared myself for how awful the coming days would be... the hurt and insult the legal process would impose on us on top of the emotional and physical pain saying goodbye to our daughter would bring.
I would spend the next few six days struggling to find comfort with friends, trying to figure out how to swallow Thanksgiving, which was right around the corner, updating our doctors and friends, and crying more than I ever have in my life. I hugged and clung to Jim so much I remember wishing I could open up his chest cavity and crawl in to just be carried there. We officially named Grace Pearl, the former after a friend in my infertility community whose daughter Grace has always given us a lot of hope, because my mom loved and suggested the name and because we thought what we were doing was grace in an unusual but still as real as ever form. Pearl was suggested by our niece and we wanted to honor her and her sweet enthusiasm for having a new cousin.
I figured out ways to march through time and then did those things. Friends and family helped tremendously. In the middle of that was signing utterly disrespectful consents, being given a factually inaccurate and emotionally manipulative packet on our daughter's development, and being made to wait 72 unnecessary hours to prolong our suffering. We just wanted to get it over with now that we knew Grace would never survive. It was hard enough without that, and I'm not sure I'll ever lose my sadness and outrage at what we as a collective nation have allowed (or in some cases encouraged) to happen to our families and women, and the direction our elected officials have run with their law-making powers. It's impossible to discuss our experience strictly in terms of our loss, and to tell it just as a private medical decision and loss our family endured because our laws imposed more on us. Our lawmakers decided to dictate how the experience should go in non-practical. judgmental and hurtful ways, and their impact is not theoretical. That component has to be part of my story today, on a day when I should just be remembering how sad I am to have learned a year ago that Grace would never get to live and learn to walk and get dressed up in silly Halloween costumes and learn about Santa, because the government couldn't just leave us alone and let it be that. I'm as sick of talking about it as you likely are hearing about it... but it's how it really happened and continues to happen, and it really, sincerely, made it so much worse than it already was.
As for now... I have really struggled with what to do this year, as we have approached and now landed on the last of the first anniversaries. The first time I'm hitting the anniversary of Grace's anatomy scan and learning she had a life-ending disease and that our dreams weren't actually finally coming true. I have dreaded this day since it happened last year and the dread has been especially acute since the seasons have changed.
I'm still deciding what to do, and I don't even know fully how I feel. I need to stop expecting some grand plan that will satisfy me to arrive like some epiphany. And it's far from all bad; sometimes I'm cheerful and upbeat thanks to a naturally buoyant personality, and other times I wish I could cry, and when I finally do I'm shocked at how much more I want and need to. I don't always know how I feel or what to do with myself. Mostly I miss Grace and wish she was here, around 8 months old, and feel acutely everything she never got to do.
