5 Years.

Australian Broadcasting Corporation's "Foreign Correspondent" - A Right to Choose

Australian Broadcasting Corporation’s “Foreign Correspondent” - A Right to Choose featured our story as part of their episode how the abortion landscape in Missouri and Illinois represents the tug of war over abortion rights that is happening right now in the United States of America.

I wanted to welcome people that arrived to our site to learn more about our story, and share some additional information:

• I am Robin Utz, and I have been married to my husband Jim for nearly 11 happy years. We live in St. Louis, Missouri.

• We tried for four years including two rounds of IVF and a prior miscarriage before becoming pregnant with our daughter Grace Pearl. But at her 20 week anatomy scan, we learned that she had a fatal fetal diagnosis, and would die upon birth. We chose a later abortion , sometimes called a termination for medical reasons (TFMR), rather than continuing the pregnancy and risking stillbirth, or choosing palliative care.

• Obtaining our abortion was one of the most insulting, degrading experiences of my life simply because the Missouri state laws are designed to be judgemental and full of unnecessary delays and hurdles. You can learn more about them here and here, and because of them, I started telling my story more, both so people would know one reason that a person might obtain a later abortion, and also so people could know how terribly these laws treat people.

• In the nearly five years since my abortion, I have learned that my situation and story is actually is not that rare; it’s that the stigma around talking about abortion is so deep, it’s hard to find storytellers willing to expose themselves to the misplaced criticism, judgment and condemnation from people that don’t walk in their shoes, or worse, would want to punish us anyway.

• My husband and I now have a two year old living child after seven total years of trying and several additional infertility treatments. Her name is Hannah, after her sister Grace, and she is utterly delightful.

You can find some of the most helpful links to information here:

• About Grace's disease

• Why Missouri’s timelines and consents are a big deal

• Why we didn’t choose palliative care for Grace

• The farewell Dance Party story and playlist

• My elected official looked at his phone and ignored me while I testified

• Our story in the Washington Post

• The Moth Podcast (with pregnancy announcement)

• Hannah’s Birth Announcement

• BBC Newshour Interview

• Why Missouri’s timelines and consents are a big deal

Updates and Upcoming: Australian Broadcasting Corporation's "Foreign Correspondent."

Hi everyone. I apologize for the lack of updates to this site - life has just been so hard and overwhelming this past year and a half, hasn’t it? My little family is as well as can be, all considered, and we are grateful that we have been able to stay healthy in the midst of Covid. We’ve been trying to soak up time with each other and enjoy every second of Hannah. She’s two and a half now, and best summed up with the phrase: abundant sunshine. 

While I haven’t been updating here, I have been as diligent and focused on fighting for Grace as ever: I have told my story countless times. I have presented advice to OB-GYNs and other medical professionals as to how they can improve abortion patients’ experiences as part of a NASPOG panel. I have submitted testimony to the legislature numerous times. I have helped others process their own experiences and tell their own stories.

In regards to media, on 8/5, Australian Broadcasting Corporation’s Foreign Correspondent will be airing an episode focused on abortion laws and access in the United States, and the overall many threats to abortion that are happening here. St. Louis, Missouri (where I live) serving as the representative of the entire United States: one state (Missouri) with a dire lack of abortion access, nonsensical and draconian laws, and an ever-growing threat that these hits will keep coming; and another state (Illinois), just across the river, where reproductive rights have been protected and codified into law. 

I am part of the story, and share the experience of learning about Grace’s disease, how we made the decision to end the pregnancy, the difficulties we encountered while obtaining our abortion, and what it has been like becoming an advocate for reproductive rights.

I’ll post again here as soon as I have a link to the full story.

4 Years Ago, We Said Goodbye To Grace

4 years ago today, we said goodbye to Grace Pearl.

This year, we will be honoring her by listening to her dance party playlist, drinking this Grace 2nd Shift Brewing beer from our friend Kelsey, and eating chocolate cupcakes delivered by our dear friend Jaime.

Every year as we approach this anniversary, which is so deeply intermingled with autumn and Thanksgiving, it feels like slowly walking into a swamp. Murky and sluggish and full of unexpected surprises. Even after 4 years it still feels that way.

But it reminds me that Grace mattered, to us and to many others, and it is an honor to grieve her.

Here are my words from 3 years ago, on the first anniversary of saying goodbye to Grace.

*****

11/23/2017

I’ve been dreading this day for a year. The first anniversary of saying goodbye to Grace Pearl.

A year ago today we arrived at a hospital in the pre-dawn hours of the morning and grimly walked into its labor and delivery ward. I had been warned that this might be especially hard emotionally by our doctors, but we opted for the hospital over Planned Parenthood because of my advanced stage of pregnancy: I could get more anesthesia there, would have more privacy, and as it turned out they recommended, an epidural. The doctors were the same at both places, so there was no advantage there. I was also grateful for the lack of protesters as I walked into the hospital; I had heard (and had seen) that people protest Planned Parenthood. I wondered what they’d say to me if they knew our story.

After changing into my gown and having IVs administered, I was given a pill to tuck into my cheek that would further the softening of my cervix. My doctors and nurses checked on us frequently advised that I get an epidural over full anesthesia for my safety (I agreed), and and assured us that they’d do their best to get hand and foot prints from Grace, and asked if we wanted to record her heartbeat. I had done so badly on my phone about a month prior using my home Doppler, so I declined this – I just didn’t think there was any way I could emotionally handle it. My home recording would be sufficient.

After a few hours it was time to go to the operating room and have the procedure done. I was so nervous going into it I started dry heaving and was sent down the room with a bucket in case I did throw up. Once we were in the room they had me sit on the edge of the operating table, hunched over while they administered the epidural, and I noticed a man sitting in the far corner. I asked if he was the doctor that would be doing the procedure (he was the only one we hadn’t met yet), which he confirmed he was, and right then the IV of relaxants, for lack of better term, started. I remember gushing out to the operating room that I had wanted my daughter, that we were doing this out of love. They promised again that they would cut her umbilical cord before doing anything else, and they were tender and compassionate.

I was in and out of consciousness for the procedure, which only took 15-20 minutes. I found myself wishing they had fully knocked me out, but also feeling grateful that I could be somewhat present for the end of Grace’s time with me. I had been advised to bring headphones and music, and I got through 4 songs of her playlist: I think they were “Born To Run”, “Sittin’ On The Dock of the Bay”, “Let’s Spend The Night Together” (which I always thought was a hilariously awkward choice, but also what we’d do for many nights of her newborn and baby life) and “Superstition”. I loved the idea of Grace and I listening to the same songs at the same time, and her heartbeat ceasing while in the warmth of my body, literally enveloped in love, hearing music tenderly chosen by her father to say goodbye.  

The next several hours were a blur of being freezing cold, being heaped with heated blanket, sleeping, and brief moments of doctors checking on me, pressing on my now empty abdomen. I felt around for Grace, and mourned for my now missing baby bump. It had never been big – we later learned because of the lack of amniotic fluid and how tightly curled up she was, but I was still acutely aware of what was gone. A chaplain came in and Jim had a long talk with her about God, Grace Pearl, and our decision while I slept. We were given hand and footprints (both which I realized looked just like Jim's which simultaneously filled and broke my heart), and a little bracelet Grace never got to wear that said "BABY".

It was hours later when I was discharged to go home, after I had crossed off all of the check boxes that the hospital required. We left in much of the same way we’d arrived: the sun was again tucked away, and Jim and I quietly and awkwardly stepping through everyone else’s lives as they continued on with the laughs, smiles, plans and jokes while we wondering how the world hadn’t stopped after such a terrible blow. As we drove off into the dark, back down to a family of two, I wondered how we’d get through Thanksgiving the next day, and then the day after that, and again after that, without Grace.

4 Years Ago - Revisiting Missouri's Judgmental Abortion Consents

Yesterday was the 4 year anniversary of learning Grace had a fatal fetal diagnosis.

4 years ago today, we had to review and sign the most judgmental, biased, political consents we could imagine. And it’s only gotten harder for Missourians to obtain abortions since then.

And from here…. we had to wait 6 days to actually have the abortion. Think about that over the next week.

Here’s my original post from the first anniversary:

*****

11/18/17

I wrote last week on the anniversary of learning that Grace had a life-ending disease, discussing how the day unfolded and felt along the way. It was an enormous blow and shock to the system. Little did I know the amount of insult was going to be added to our devastating injury in the form of the process the state of Missouri imposes on women and families that want or need to terminate pregnancies. 

I had been given hints about what was to come during our anatomy scan and subsequent discussion with our doctor, and then the follow up high-tech ultrasound to confirm Grace's diagnosis. There was talk about how we, at 20 weeks, 6 days pregnant, did not have a lot of time to make a decision about how to proceed. When we were called about scheduling time to come sign the consent forms, I was told we would have to try to sign them the next day because of the 72 hour waiting period, and that if we couldn't get that performed by by 21 weeks, 6 days (including the 72 hours), we'd have to go out of state to have the abortion. I was told we were lucky to be in St. Louis, home of the state's only abortion clinic (at Planned Parenthood). All of this stunned me and left me feeling misunderstood, unsupported and worst of all, judged. We had just learned our very wanted daughter would never get to live the life we'd dreamed of for her. Now we just wanted to get the necessary next steps over with as quickly as possible. The limitations and requirements felt hurtful and inappropriate to me, at a time when I was already deeply steeped in grief. I kept asking if there were exceptions for people like us: people that wanted their pregnancy but learned it would never result in a happy, healthy child, and that instead our child would die a painful, suffering death. To be informed over and over that there weren't exceptions told me that our lawmakers clearly hadn't thought the laws through well. As I considered that unavoidable reality, I also considered how I would feel if I needed or wanted an abortion for other reasons, like an abusive partner, failed birth control and so on. I felt more and more like if the laws missed the mark on us, they'd missed the mark on so many other scenarios as well, and that therefore the requirements weren't appropriate for anyone.

As a privileged woman of reasonable means, learning about the ridiculous process required of us to do what was humane for our daughter was kind of like when you first learn that adults aren't always mature, kind or right after growing up depending on that as a fact. How much my privilege was still helping me in our terrible situation washed over me, leaving me heartbroken, indignant and shocked over and over. What about women in rural areas (100+ miles away) who needed the time and money to get to St. Louis or another state for the abortion? What about women who already had children and couldn't find childcare as soon as they needed to to sign the consents to meet the 72 hour waiting period and get the termination before time ran out? Anatomy scans happen between 18 and 22 weeks, so this isn't implausible in the least. We also were lucky to have jobs that accommodated our last minute scheduling needs, but many are not nearly as lucky. The Hyde Amendment prohibits federal funds from funding abortions, so it's exceedingly expensive at our stage of pregnancy ($1500 at Planned Parenthood, $8000 at a hospital, which is highly recommended at our stage of pregnancy because it is risky for me as the mother). Who can afford that at such short notice? I was blown away at learning this is how it really is to get an abortion in Missouri. 

That is how much I knew going into signing the actual consents to start the 72 hour clock and schedule our procedure. I had no idea how insulting the consents themselves would be. If the requirements I had encountered so far (geographical limitations, 72 hour waiting period, likely lack of insurance coverage, deadline that contradicted the recommended timeline of the anatomy scan guidelines per my doctor) were tone deaf to our situation, the consents and information we were given were downright callous and insulting.

When Jim and I arrived to sign the consents, we were met quickly by a doctor who, before reviewing the materials with us, warned us that she would have to guide us through some very difficult paperwork, but that it did no reflect how she, the doctor assigned to our case, felt about us at all. I quickly realized and confirmed that this was legally required paperwork, NOT medically required paperwork. I grew cautious and reserved, preparing myself for the worst. The state of Missouri delivered: we had to initial every line of this consent form :

If you're reading this, feeling perhaps like it's appropriate, please consider the following:

• We were reeling from learning our intensely wanted daughter was going to die a painful, frightening death upon birth, if she made it that far.

• The care and support we encountered after learning that was being required to sign a consent saying I had seen an ultrasound and have heard a heartbeat. Imagine for a second how you'd feel in that situation. I was nearly 6 months pregnant. I had requested extra ultrasounds and had a home Doppler to check for Grace's heart beat every few days because I was so nervous after nearly 4 years of infertility and a prior miscarriage. This confirmation requirement was ridiculous, insulting and hurtful.

• I'm being told about Grace's anatomical and physiological features by a legal consent form instead of by my medical staff, as if I'm unaware. The doctor that just the day prior had given us an hour long ultrasound, detailing every feature. Would we allow this in our other medical decisions? Did they really think I needed education or reminding? I didn't need a government issued document to do this for me, especially when it included inaccurate information (more about that in a minute).

I couldn't believe I had to sign such an obviously biased and manipulative document (which highlighted all of the risks of having the abortion, but none of the higher risks of continuing the pregnancy, such as the very real risk to a woman's health), especially when my impending medical consents would cover everything necessary, and more importantly, were written using informed medical opinion and facts. The consent form lit me with indignation, outrage and defeat.

We had to take several breaks to process what we were having to sign. The layers of how openly against us our laws were kept washing over me. I have lived in Missouri all of my life. I have paid taxes here, voted in every election I can, volunteered here, defended it to people that want to call it backwards and ignorant. And here I was, a life-long citizen, being told I was less than a full human deserving of basic decency, bodily autonomy and incapable of making up my own mind about my pregnancy, because I had gotten pregnant. What a catch-22. I was deemed adult enough to be Grace's mother, but not to spare her an inevitable painful death. I wondered again if men would tolerate being treated this way. 

When we were done with the consents form, we were given the Informed Consent Packet:



This is 36 glossy pages of tax-payer funded "education" on the fetus, carefully detailed (yet sometimes inaccurately) by gestational age before getting into the risks of abortion while ignoring the risks of continuing pregnancy (which are far greater than those associated with terminating a pregnancy (pages 13-15)). It inaccurately stated that fetuses start to feel pain at 22 weeks, while every doctor we talked to said 24-28. The packet is just as loaded with judgmental notes, starting with the first page where it notes: “The life of each human being begins at conception. Abortion will terminate the life of a separate, unique, living human being.” This is of great debate, so I was angered that it was stated as fact, with utter disregard for the medical community's findings and opinions in regards to this. I didn't like that political opinions were being fed to me in my time of needing a medical procedure. And I wondered: what were we supposed to do? Say the packet succeeded in making me feel guilty and I wanted to change my mind. What was I supposed to do with that feeling? Not end our pregnancy? The information in the packet wasn't going to make Grace's disease go away, and all it did was make me feel disregarded, insulted, judged and utterly misunderstood. It felt like kicking us when we were down.

I asked if we had to take the packet with us, and were told no. Jim asked how many people had taken it with them and the doctor said the last one was probably taken 3 months ago. That told me a lot about how firm people felt once they made the appointment, and how much of a difference this packet likely made in the minds of the women it was designed to affect.

I felt terrible for our doctor, clearly there to provide me with great medical care, being required to give us this inaccurate information, designed to manipulate me. She never failed to be supportive and compassionate with us throughout the entire process. 

We left the clinic to start our 72 hours of waiting, with the wound of our daughter's news still so new that it was increasing and spreading rather than being anywhere close to starting to heal. We added to it fury, disgust, helplessness and deep sadness at how we were treated by the state of Missouri, and how other women and families are treated. Do we not care about the psychological impact on our women over unborn fetuses? I never really got that concept so fully until then. 

Anyone close to me would tell you I'm a different person now than I was before we lost Grace. Having to choose to end our pregnancy was life changing and devastating, but being treated like ignorant, flippant, uninformed parents by the state of Missouri changed me just as much. It ignited an anger and sadness in me that has been just as difficult to cope with, and spurned me into advocacy and this website. It has not been fun to expose myself in this way, as we have grieved, and to sometimes meet condemnation for our choice. But that's how desperately and strongly I feel about our experience. I never want another family to have to go through such an awful process ever again. I'm just one person, but I'll do what I can to try to make it better for as long as I can. 

If our story filled you with the same feelings I've described, please consider sharing. The more people know about this reality, the closer we'll get to implementing real change. People need to know what the people they're voting for are doing, how badly written the laws are (and continue to be) and how it affects real families.