Today is Grace Pearl's Due Date

Today is a big day. We have been dreading this day since our termination doctor kindly warned us to have a plan around today, because it would knock us flat. Today is Grace Pearl's due date. 

3/31/17. I've had that date in my head for so long. Because we did IVF, we knew the due date before I even got pregnant with Grace. Crazy isn't it? When you do a frozen embryo transfer, you have to prepare your body for weeks/months in advance depending on the protocol you have. So for weeks, I knew that unless something went awry, we'd transfer a little 5 day embryo on July 13th, and that embryo, if it made it to birth, would be due today, March 31st, 2017. 

I don't know if I can fully express how much I wish it'd turned out that way. I know life has taken me a different and still meaningful direction since then, and at some point I'll write more about how I feel like advocacy chose me, not the other way around, and that in nearly every area of my life I feel like I'm on a rollercoaster with no option for getting off, from the grief to the advocacy work. I am glad some good is hopefully coming from this, and I hope that I'm doing Grace proud. But for now, I just want to honor Grace Pearl, and how much I wish I'd gotten to have more time with her. How much I wish I'd gotten to watch her grown up.

When we got pregnant with her, we were utterly delighted. We'd been trying for over 3 years and it felt like it was finally our time! I took seemingly endless pregnancy tests to confirm and reconfirm over and over that I was indeed pregnant. By our 6 week appointment we got to see and hear Grace's heartbeat, which brought tears to my eyes, and by week 8 she growing rapidly. By week 10 she looked like a little gummy bear and kicked away at the ultrasound wand. 

Grace at 6 weeks

Grace at 8 weeks

Grace at 10 weeks

We planned gender reveals to our parents, and I tracked my slowly growing belly (I didn't know yet that it was growing slower than normal because of the lack of amniotic fluid.)

We announced to all of our friends and family, and on Facebook. We started designing Grace's nursery, and dear friends had started planning a shower for me. We registered with my mom the weekend before we learned about Grace's fatal illness. 

It remains very, very hard for me to think back to mid-November when we learned about Grace's diagnosis, and 6 days later when she was terminated. As I gathered pictures from my phone camera roll for this post, they fall away then. I don't have her final ultrasound pictures because my parents came and collected them as well as all of the things we'd gotten for Grace while we were signing the consents to have the termination done. All of it remains hidden at their house, in what they call the Hope Pile.

You start moving on with your life, and both hope and immense grief remain. It's been 4 months, and the pain is still acute. I'm glad to be smiling and laughing more easily, but honestly I'm still very, very sad. I don't know how else to put it.

I keep thinking about some of the things that we were so excited to do with Grace, including:

• Having dance parties with her in our living room.
• Traveling with her to some of our favorite places, especially our favorite cities and National Parks. 
• Taking her to see tons of concerts while teaching her to always use the best ear protection. :) 
• Teaching her how to ride her bike and taking rides through the city together.
• Just learning and soaking up her personality as it revealed itself. Even the really annoying parts. :)
• Seeing what she looked like! Would she have my blue eyes and red hair, or Jim's black hair and hazel eyes? Based on the hand and foot prints we got, I know she had his feet and hands. I'm grateful for this one little detail we were able to learn.

Grace's hand and foot prints 

Today, Jim and I are going to start the process of spreading bits of her ashes in some of our most cherished spots, if we can bear it. The idea of splitting her ashes up feels really hard for me - I haven't done it yet. Throughout all of this pain, Jim and I have remained solidly devoted to each other, and respectful of our shared and individual loss and pain, and grateful to have been in alignment on the choice we made to save Grace Pearl from suffering. I'm so grateful this hasn't take the toll on our marriage that it does many. But the fact is we were hoping to have this day be the day we started being a family of three, and while the sadness that that isn't the reality changes, it doesn't go away. 

Listen To Our Story on NPR's 'All Things Considered'

You can hear a four minute segment featuring me telling our story about losing Grace Pearl here, on NPR's All Things Considered. Story by Durrie Bouscaren. 

Our Visit to Washington D.C. (Part 2: Judge Gorsuch's Confirmation Hearing and Meeting with Senator McCaskill's Office)

In my prior blog, I discussed preparing to go to Washington D.C. to advocate, and my husband Jim's meeting with Senator Claire McCaskill, where he shared our story with her and a room of 75 other Missouri constituents. As I said, Jim isn't really keen on public speaking or attention, and I am SO proud of him for advocating for Grace and families that need options like these to be available and legal. It was a huge demonstration of his love for his daughter.

While Jim was doing this, I meet up with Shivana Jorawar and Carina Ahuja from the National Abortion Foundation, which is an organization that has been amazing to work with. They have helped me share our story and focus on what might be most helpful in terms of advocacy, which is something I've gotten overwhelmed with as a new advocate. Shivana had picked up the guest passes for Judge Gorsuch's confirmation hearing, which Senator Feinstein had graciously provided, and we headed in to get settled.

My badge to attend Judge Gorsuch's Senate Confirmation Hearing. Photo by Marilyn Baker

Professionally, I don't do anything like this in my regular day to day work (I'm a project manager) so it was amazing to personally be in the room where it happens: where such important policy and political work takes place. 

Right when I was finally getting settled in and used to the idea that I was going to get to watch a day of Judge Gorsuch's confirmation hearing, I was invited over to meet Senator Dianne Feinstein and Senator Chuck Grassley. What an insane honor! I will go into how I felt about the entire experience in the next blog, so I don't want to delve into it too much here, but being able to thank Senator Feinstein for having me there, and for bringing our story to the forefront was amazing.  We have had so many amazing people advocate for and support us on this journey, and so rarely do we get to thank them in person. Senator Feinstein was absolutely lovely; warm and enthusiastically stating that we have to keep trying to have a family, and Senator Grassley likewise was warm, funny and very kind. It was an immense privilege and treat to meet them both, and being able to personally hand Senator Feinstein my thank you note as well as my packet of materials was such a source of pride for me. 

Meeting Senator Feinstein and Senator Grassley. Photo from PBS News Hour

You can watch our entire interaction here (which starts immediately): 

For more, visit http://www.pbs.org/newshour

The hearing started immediately after my meeting (as you can see in the video above). I got to hear testimony on Judge Gorsuch's skillset, character, prior judgments and temperament. The wide variety of witnesses included members of the American Bar association, clerks Gorsuch has worked with, individuals who had been impacted by cases Judge Gorsuch ruled upon, and individuals representing organizations that have concerns about how Gorsuch's rulings as a Supreme Court justice might affect them, such as representatives from LGBTQ and Pro-Choice organizations. Sandy Phillips, whose daughter, Jessica, died in the Aurora, Colorado, theater massacre gave the most heart-wrenching testimony of the day, and again I was overwhelmed by how lucky I was to be in the room where such important topics were being discussed. It really hit home how real each and every issue is, and how full of gray area and nuance they all are, not just the one I personally am fighting for (reproductive rights). More on that in the next blog.

The one break we took during the day was to meet with a member of Senator Claire McCaskill's Legislative Counsel to share my story and how we feel Gorsuch's confirmation may affect our legal options going forward. I was accompanied by Shivana and Carina from the NAF and Gaylynn Burroughs from the Feminist Majority Foundation, and it was so invigorating to be able to share my perspective and story with the room, and to advocate for Grace. I was able to share how heartbreaking it was to learn that our desperately wanted daughter wasn't going to survive pregnancy, our feelings that termination was our best option, and how the Missouri abortion consents made the entire process so much more difficult than it needed to be. I was also able to share that I felt compelled to advocate because of how terrified I and so many others feel right now after President Trump said he would nominate a judge that would overturn Roe v Wade. This isn't theoretical - this really affects lives in a very, very real way. It would 100% hurt Grace, in our opinion, especially since the Missouri abortion laws prove that exceptions are not put into place for very important situations like fetal anomalies. A cruel oversight at a minimum which doesn't give me comfort that our legislators will produce or pass laws that truly do want and consider the best for all of the parties that might be affected.

The day was incredibly exciting, invigorating and empowering, but also very bittersweet and overwhelming. As I mentioned above, the next blog will be about how it felt to be there, and how we feel now, but it goes without saying that the day was a blend of feeling so excited that Grace is making a difference, but also overwhelmed that the people that need to care maybe don't, or that we just can't reach some people. Logically knowing that and seeing it with my own eyes are separate things. But undeniably, getting to attend Judge Gorsuch's confirmation hearing and thank Senator Feinstein in person were once in a lifetime opportunities, and a testament to how loved Grace was, continues to be, and how much she has impacted people, even though she was only part of our world for a far-too-brief time. 

(Read Part 1 of our trip to DC here.)

Our Visit to Washington D.C. (Part 1: Preparing and Jim Advocating with Senator McCaskill)

I'm going to have to write the story of what the past 2 weeks has been like over a few different blog posts. It's just been so surreal and strange and sad and wonderful at the same time. I often say that I have never changed more in my life than I have in the past few months, since we lost Grace in November, and that feels especially true in the past week to two. Considering Grace's due date is quickly approaching, and everything that has recently transpired, I expect the coming weeks to remain tumultuous, exciting, rewarding and ultimately very bittersweet.

For now, I'm just going to start to cover what my experience has been over the past few days. I'll follow up soon with how all of this has felt, and a few other updates. 

As I said in my last post, I had no idea that Senator Dianne Feinstein was going to mention my Op Ed in the Washington Post during her opening remarks of Judge Neil Gorsuch's confirmation hearing. I was already planning a trip to Washington D.C. for late the week of March 20th that included advocating at the nation's capital for the first time in my life, and Senator Feinstein's words invigorated me. I was planning to meet with some great individuals I've been connected to at the National Abortion Foundation (NAF), and then word arrived that we were being invited to Judge Gorsuch's Supreme Court confirmation hearing as a guest of Senator Feinstein's. I was utterly elated. The honor and privilege of this invitation was not lost on me. 

I also felt suddenly very unsure of myself: not of my story - I feel strongly that we made the right personal choice for our family in response to the horrific news our daughter's fatal illness, but silly things like logistics stressed me out the most. What if our flight was canceled? It was already the last one of the night. How would my husband Jim be involved, if at all, with this new agenda? I already had plans for Coffee with Claire, an awesome-sounding event Senator Claire McCaskill does where she has coffee on Thursdays mornings that she is in D.C. with Missouri constituents. Would I still be able to do that? Would Jim go without me if I couldn't? What would I wear? Would it require me to wear pantyhose? (The answer was firm: yes.)

More importantly, I considered what materials I should bring with me. What would be most helpful for sharing our experience, which continues to break our hearts, and to help explain why it feels so urgent to share right now? What about the other heartbreaking and inspiring families I have met through this journey and their stories? I wanted to share these stories with anyone I could to both honor their losses and the terrible decisions they had to make (which are often met with criticism and scorn because the word abortion exists within them), and spread awareness. What happened to Grace is not an isolated incident. It has happened far more than people think and it will happen again. Our laws need to acknowledge this fact and be inclusive of it. 

I ended up bringing several folders with me which contained my written testimony and related media such as the Washington Post Op Ed and the St. Louis Public Radio piece, and numerous stories and media from other loss families. I will discuss these more in the next blog post.

The schedule for the day was set with me heading to Judge Gorsuch's Senate confirmation hearing early, and thus having to miss Senator McCaskill's coffee meeting. My husband, Jim, graciously offered to go and share our story instead since I could not attend. He reported that he met some amazing people, including Representative Bruce Franks Jr., and that he was able to share our story to a room of about 75 people, including Senator McCaskill. It's not really in Jim's nature to enjoy public speaking or attention, so his willingness to go and advocate for our story made me so proud, and served as a reminder of how important Grace was and remains to him, and always will be. Her fatal illness and subsequent termination doesn't diminish her importance or impact in our eyes. 

Senator Claire McCaskill and Jim. Photo by Senator Claire McCaskill's staff.

In the next blog: My experience attending Judge Neil Gorsuch's confirmation hearing, meeting Senators Dianne Feinstein and Chuck Grassley, and sharing our story with Senator McCaskill's staff.

Read Part 2 here!

Jim and myself in the Hart Senate Office Building. Photo by Robin Utz

Senator Dianne Feinstein's Remarks, The New York Times, and What's Next

I was happily stunned this morning when Senator Dianne Feinstein referenced our Op Ed in the Washington Post during her opening remarks of Judge Neil Gorsuch's confirmation hearing. You can watch her remarks in the video below:

Senator Dianne Feinstein, Ranking Member of the Senate Judiciary Committee delivers her opening statement during the confirmation hearing of Judge Neil Gorsuch, the president's Supreme Court nominee, on March 20, 2017.

They are transcribed here:

Two weeks ago, the Washington Post ran an Op-ed written by a woman who desperately wanted to have a baby. She described how she and her husband went to great lengths for four years trying to get pregnant and were thrilled when they finally succeeded. Tragically, after her 21-week check-up, they discovered her daughter had multi-cystic dysplastic kidney disease. They were told by three separate doctors that her condition was 100% fatal. And that the risk to the mother was seven-fold if she carried her pregnancy to term. The mother described their excruciating decision and the unforgiving process the couple endured to get the medical care they needed. The debate over Roe v. Wade and the right to privacy, ladies and gentlemen, is not theoretical. In 1973, the court recognized a woman's fundamental and constitutional right to privacy. That right guarantees her access to reproductive health care. In fact, the Supreme Court has repeatedly upheld Roe's core finding, making it settled law for the last 44 years. I ask unanimous consent, Mr. Chairman, to enter into the record the 14 key cases where the Supreme Court upheld Roe’s core holding and the total 39 decisions where it has been reaffirmed by the Court. If these judgements when combined do not constitute super precedent, I don’t know what does…Roe ensured that women and their doctors will decide what is best for their care not politicians.

I hope I can fully articulate my gratitude to Senator Feinstein for sharing our story during such a critical time. Not only does it expose more people to stories like Grace's, but it also reminds the world that we have to be very careful to create, craft, and enforce laws around women's reproductive rights very carefully to truly bring all of the necessary components into account.

I was likewise very glad to see Judge Gorsuch literally take note of our experience. I hope so much that this indicates he is curious about our story and circumstances, and that he is open-minded about preserving women's reproductive rights and privacy, and supporting laws and legal decisions that acknowledge and include the gray areas around abortion. Historically, his recorded statements towards women's reproductive rights don't indicate that he feels this way, and there are very valid concerns around how he will approach reproductive rights and upholding Roe v. Wade if he is confirmed, especially since Donald Trump said he would nominate a justice that would overturn Roe v. Wade. 

Senator Feinstein's remarks resulted in this article from the New York Times, which provides an excellent summary of Senator Feinstein's remarks as well as our Op Ed. 

This all feels like so much happening, in the best way possible, as I prepare to head to Washington D.C. to advocate for the first time in my life. I'm not going to lie; I'm a little nervous. This is so new for me, and it requires more courage than I'm used to having to supply.

But today's events have made me feel all the more proud, and bolstered me to go to Capitol Hill and tell our story. I have never felt prouder of the difference that Grace is hopefully making. I so desperately want the utterly heartbreaking choice we made for her, out of pure love, to stay legal, and have great hope it will become something people treat with more compassion.  

Why Not Palliative Care for Grace Instead?

To discuss this topic, I'm going to bring up a story.

I was notified of an update on my Facebook page from Judie Brown, who wrote this note. Judie includes:

"Utz complains that, because of a Missouri state law, her insurance did not cover the cost of aborting her daughter. She writes that getting the abortion can be costly since Planned Parenthood does not offer abortion when the health of the baby is the reason for the abortion. In addition, she complains that, had she waited two days longer for her abortion, she would have had to go out of state for it.

In other words, Utz is using the very sad abortion-death of her daughter to sound the alarm and warn readers that the act of abortion must be protected by law. Sadly, she does not recognize that her preborn daughter was worth every ounce of suffering she and her husband might experience simply because they loved her unconditionally and looked forward to seeing her, if only briefly."

First, Judie, thank you for taking the time to write your note. You noted that you feel so strongly about it it's hard for you to not come off as harsh or cruel, and I thank you for your effort – you are obviously coming from a place of strong moral objection to abortion (I assume for any reason) and I respect your position, and know you're far from alone in it.

Before I share my perspective, I do want to clarify two things –

• You misunderstood the Planned Parenthood coverage. I did not complain that Planned Parenthood doesn't offer abortion when the health of the baby is reason for the abortion. They indeed do. 
• You cite a page that says babies feel pain at 22 weeks (20 plus the two weeks before fertilization), which Grace wasn't yet. There is a lot of research that supports that fetuses don't feel pain until the third trimester (28 weeks). This is the information every single one of our medical professionals independently gave us; it is not an isolated number.  However, even if she'd been later when we discovered this, we'd still have wanted to explore the option because the pain would have been less than she'd have felt at full term, and she wouldn't have just undergone the trauma of delivery.

Now for my perspective: 

Judie, you say "Sadly, she does not recognize that her preborn daughter was worth every ounce of suffering she and her husband might experience simply because they loved her unconditionally and looked forward to seeing her, if only briefly." While I respect that you feel this way, your feelings don't make them fact.

I can assure you that my husband and I loved Grace immensely. When we learned about her diagnosis and how little time we had to make a decision, we were shellshocked. We considered continuing to carry her, and also delivering her then so we could see and hold her. But we didn't pursue any of these options precisely because Grace was 100% in mind:

We were told by now five independent medical professionals that Grace would have 100% not lived, and there was a good chance she would have been stillborn. So her options for demise were:

1. Have the pressure and weight of my body slowly crush her to death, and be stillborn.
2. Put her through the trauma of delivery, to then discover with full consciousness and a fully developed nervous system, that she couldn't breathe and didn't have functioning kidneys, and be put immediately on life support or allowed to pass away. 
3. Have us terminate the pregnancy via cutting her umbilical cord at 21 weeks 5 days in the warmth and comfort of my womb, before her nervous system and consciousness had developed further. 

All of these options sounded terrible because they were. But hating the options didn't allow us to not make a choice. So we made the best choice we could with our daughter, each other and our Higher Power in mind. We believed that her passing in the warmth and love of my body was the best route forward. People debate whether having her umbilical cord cut before she passed was humane, but I feel strongly it was the MOST humane out of terrible options. You may not feel that way, and I respect that, but it doesn't make it less true from our perspective, and I hope you can consider ours.

A lot of your post is about the options for palliative care for newborns that have disease. You noted that "At Alexandra’s House, Grace and her parents might have experienced something quite different and may have felt a sense of closure and peace if Grace had died a natural death." I have not done extensive research on Alexandra's House, but I'm including a link here for people who feel the way you do. I want them to have a choice in handling this terrible situation in the way that feels best to them as much as I want for us to be able to make the choice that's best for us. 

There is one final misconception I want to clear up: my husband and I feel a sense of closure and peace – you are incorrect to assume we do not. We had terrible options presented to us about our incredibly loved baby girl. But we did our very best with the information we had and feel 100% at peace with the decision we made. Sad about Grace's fatal illness and the options present to us, and never getting to watch her grow up? Absolutely. Upset that the legal process made it unnecessarily cruel? Yes. Comforted that Grace suffered as little as possible because of the choice we made? 100%.

It may not have been the choice you'd have made, and I respect that, and want to include Alexandra's House for people like you who are faced with such terrible options and wouldn't make the choice we did. But it's incorrect and inappropriate to assign how you'd feel about it to how we feel about it and assume your opinion is fact. It simply isn't. 

Have any questions? Comments? Want to continue discussing? Please comment, and remember, only kind, respectful, comments will be welcomed. Let's be curious instead of judgmental. 

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