Another Important Part of Our Story: Infertility

I have been planning to talk about the infertility piece of our journey with Grace Pearl and entering the world of advocacy since this blog and website started. RESOLVE's National Infertility Awareness Week (NIAW,) which runs April 23-29 felt like the perfect time.

From NIAW2017

The theme of NIAW this year is "Listen Up!" which fits pretty perfectly with our blog. I know historically we've been focused more on abortion,, but infertility is also an enormous part of our story. It's in the first sentence of my Washington Post Op Ed. The whole point of this blog and website and all of the media that I have done has been to get our story in front of people, and to share what a real story of what infertility and later term abortion looks like. We want to foster discussion with people about tough topics like infertility and abortion with compassion, listening and care.

Infertility is not only an equally important part of our story to abortion, but is also very similar to terminating pregnancy for medical reasons in that both are topics that are very, very painful for a family to go through, are utterly startling and life-changing to encounter, and can be highly stigmatized by people that don't fully understand them. It's not just that people don't know a lot about late-term abortion and infertility; when they don't, they often assume very negative things in the absence of education and facts.

I wanted to start with some common statistics about infertility to introduce to people that aren't familiar with what it is and how it affects families like ours. These statistics are provided by RESOLVE: The National Infertility Association, which is a truly life-changing resource for many families coping with infertility by providing support groups and excellent education on infertility and the many challenges and options that come with it.

Infertility is defined as the inability to conceive after one year of unprotected intercourse (six months if the woman is over age 35) or the inability to carry a pregnancy to live birth.

• 7.4 million women, or 11.9% of women, have ever received any infertility services in their lifetime. (2006-2010 National Survey of Family Growth, CDC)
• 1 in 8 couples (or 12% of married women) have trouble getting pregnant or sustaining a pregnancy. (2006-2010 National Survey of Family Growth, CDC)
• Approximately one-third of infertility is attributed to the female partner, one-third attributed to the male partner and one-third is caused by a combination of problems in both partners or, is unexplained. (www.asrm.org)
• A couple ages 29-33 with a normal functioning reproductive system has only a 20-25% chance of conceiving in any given month (National Women’s Health Resource Center). After six months of trying, 60% of couples will conceive without medical assistance. (Infertility As A Covered Benefit, William M. Mercer, 1997)
• Approximately 44% of women with infertility have sought medical assistance. Of those who seek medical intervention, approximately 65% give birth. (Infertility As A Covered Benefit, William M. Mercer, 1997)
• Approximately 85-90% of infertility cases are treated with drug therapy or surgical procedures. Fewer than 3% need advanced reproductive technologies like in vitro fertilization (IVF). (www.asrm.org)
• The most recently available statistics indicate the live birth rate per fresh non-donor embryo transfer is 47.7% if the woman is under 35 years of age and  39.2% if the woman is age 35-37. (Society for Assisted Reproductive Technology, 2013)
• Fifteen states have either an insurance mandate to offer or an insurance mandate to cover some level of infertility treatment. Eight of those states have an insurance mandate that requires qualified employers to include IVF coverage in their plans offered to their employees: Arkansas, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, New Jersey, and Rhode Island.
• A study published in the New England Journal of Medicine (August 2002) found that the percentage of high-order pregnancies (those with three or more fetuses) was greater in states that did not require insurance coverage for IVF. The authors of the study noted that mandatory coverage is likely to yield better health outcomes for women and their infants since high-order births are associated with higher-risk pregnancies.
• The Affordable Care Act (ACA) does not require coverage for infertility treatments. Those states with an infertility mandate that covers IVF may have chosen an Essential Health Benefits (EHB) benchmark plan that includes the IVF mandate. The EHB impacts the individual and small group markets only in each state.

From the Disney movie "Up"

As you can see from the stats above, infertility is much more common than people think, and is not typically covered by insurance, which makes the pain of not being able to naturally conceive a child and undergoing often painful, lengthy and invasive infertility treatments (if a family opts to go that route) all the more difficult. Toss in that these drugs can really affect your hormones and moods and some days it feels like everyone and their sister is announcing their pregnancy with a cute photo on social media, and it's easy to feel very alone and very, very misunderstood and left behind.

Just like abortion (and late term abortions specifically) and miscarriage (another hurdle we've unfortunately crossed on our thus-far unsuccessful journey towards parenthood), infertility is not discussed enough. The more we all share our stories, the better others will be equipped to understand the challenges we face. If enough people speak up, perhaps we'll be able to get nationally mandated covered for infertility (which is a disease as recognized by The American Society for Reproductive Medicine (ASRM), the American College of Obstetricians and Gynecologists (ACOG) the World Health Organization (WHO)). In the meantime we can help others that cope with infertility feel less alone and be enabled to make well educated and supported decisions about what they want to do about the awful card they've been dealt. 

I'll be sharing more this week and in the coming weeks about our story and where we stand now. As far as how our story relates to the statistics up above, I will share the following (and am trying to keep it from being too technical/medical):

• No procedure short of IVF will work for us to conceive a biological child due to the causes of our infertility. We tried many other routes before learning this however, and had many, many months of enormous disappointment upon learning we weren't pregnant each month.
• We have done IVF twice.
• I have been pregnant twice from the embryos that we conceived in those two rounds of IVF.
• The first pregnancy ended in miscarriage in February 2015 at 9 weeks pregnant.
• The second pregnancy ended when we terminated Grace Pearl at 21 weeks, 5 days pregnant for fatal Multicystic Dysplastic Kidney Disease on November 23, 2016. 

I'll be sharing more this week and in the coming weeks about our story and where we stand now. If you have a story to share, please contact me!

My First Time Testifying at the Missouri State Capitol: The Good

Yesterday I testified against Senate Bill 408 at the Missouri State Capital in Jefferson City, MO. SB 408 is one of the heartbeat ban bills that you might be hearing a lot about in the news lately, which prohibits an abortion after a fetal heartbeat is detected. The summary of the bill is: "Requires the use of a fetal heartbeat detection test prior to an abortion and prohibits an abortion if a fetal heartbeat is detected". It also adds larger penalties to doctors that fail to perform a fetal heartbeat test at most 96 hours before the abortion.

You can read the bill summary and find links to the full bill here. I'm going to talk more about it and what heartbeat ban bills do, the assumptions they're based on and so on on my next blog, but  today I'm going to focus on the good parts of the experience (and there's no real way I can say anything positive about a bill like this - it's incredibly dangerous and uncompromising). 

This was my first time personally testifying against a bill, and I found it to be a very exciting and tiring process. I went with M'Evie Mead, the Director of Policy and Organizing for Planned Parenthood of MIssouri. I have been meeting with people like M'Evie and Alison Dreith (Executive Director at NARAL Pro Choice Missouri) and some State Representatives to learn how I can expand my ability to help and continue moving forward with advocacy, and their advice and guidance has been invaluable. Alison was at the hearing too, as well as Rachel Goldberg, whose story I have shared here, and whom I was ecstatic to meet in person. Rachel perhaps more than any other person has helped guide me through the testimonial portion of advocacy, and has kept me looped in on opportunities to do so in Missouri. 

Meeting the amazing Rachel Goldberg! Photo by M'Evie Mead.

Me, Dan Mosby, Kathy Peterson, Rachel GOldberg, Sarah Baker of the ACLU. Photo by M'Evie Mead

After sharing my testimony, which largely was a very positive and empowering (and of course very sad) experience, I was able to meet Representative Bruce Franks Jr., whom Jim met while he was in DC, Representative Stacey Newman and numerous other individuals that I have been eager to meet for some time. 

M'Evie Mead of Planned Parenthood, me, and State Representative Stacey Newman. Photo by M'Evie Mead.

It was incredibly invigorating and also exhausting to be at Jefferson City. Invigorating in that it's very rewarding to have Senators, even those that might oppose your point of view, be touched by your story and thank you for coming to share it. And also exciting and inspiring to meet others that offer help and guidance and even simply share their time and expertise with you, like M'Evie, Alison and Rachel. I'm so new to this that I felt in many ways I enrolled in a masters class when I'm still only ready for an undergraduate course! But it makes for a long day full of ideas, excitement, new and old faces and seeing a lot of uphill battles, so by the time I got to bed last night, I was more than ready.

More in the next blog about my experience in Jefferson City.

Helpful Resource: Ending a Wanted Pregnancy

One of the most amazing pieces of advice I got when we had just learned that we'd be terminating my pregnancy with Grace Pearl was to check out a website called Ending a Wanted Pregnancy. 

Ending a Wanted Pregnancy

Not all pregnancies have a fairy tale ending. If you've received a severe prenatal or maternal diagnosis and have decided to end your wanted pregnancy, this website exists to provide you understanding, comfort, and support. Here, you will find the empathy, compassion. and solace you deserve following this uncommon, traumatic and often misunderstood form of pregnancy loss.

It took me a bit to find the mental space and energy to visit the site, but I was so thankful I did once I was there. It provided two things: compassionate, lovingly-provided information, and a private group where I met other families that had been in the same situation I'd been in. I can't say what the latter did for my sense of isolation in both the situation Jim and I found ourselves in, as well as the decision we made in response.

People very often don't talk about their abortions (1/3 has had one, meaning you absolutely know women that have had one even if they haven't told you, including your mother, daughter, sister, niece, aunt, favorite grocery store checker, mail woman, lawyer, accountant... the list goes on and on). But in our case, everyone knew we were pregnant. We'd announced it and registered and were planning a baby shower with beloved friends. No, I didn't have to tell anyone that we aborted Grace, but I didn't want to feel ashamed of our decision, which was an absolutely appropriate one considering increased pain she'd feel if she were born, the increased risk to me, and the safety of the procedure. It may make people uncomfortable, but the fact is I had an abortion with Grace, and while I 100% loved her, I also 100% believe it was the right choice. It is important that people know our story to dispel the shame around abortion. So we wanted to tell people, once we were ready. People knew we were pregnant, it was just about how to say the pregnancy ended, and that was where Ending a Wanted Pregnancy came in to help me feel less alone. 

I devoured the website, which helped me see other stories and diagnosis information from people that had pregnancies end for Grace's diagnosis. Reading the practical information helped decrease my soaring anxiety (more on that another time). I felt understood and calmer. There was also an excellent undecided section for those that are still exploring their options and deciding how to proceed with their pregnancies. I loved that they offered resources for people that decided to continue with their pregnancies, indicating that they truly are there for full support, no matter what.

The private support group took all of this to another level, where I met other people that had gone through the same process. After applying on the website, I was welcomed with non-judgmental, open arms, and have taken great pride at welcoming others. I have never seen a word of judgment or condemnation; only acceptance, support, care and gentleness. It truly has and continues to make a huge difference in my grieving process, and has helped give me the strength to advocate.

If you or a person you know has had to face the tragedy we have, please share Ending a Wanted Pregnancy with them. It's a wonderful resource, and I can promise they will find valuable support. It is a 100% free site (I'm not writing this from any place other than just to tell others that may be in our situation about the site), and can make a huge difference.

Our Visit To Washington D.C. (Part 3: About the Folders I was Holding, and How I Felt)

You can read parts 1 and 2 of our trip to Washington D.C. to advocate and attend Judge Gorsuch's confirmation hearing here:

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

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

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You might have noticed in my picture in my blog post from attending Judge Gorsuch's confirmation hearing that I had several blue and green folders with me:

Meeting Senator Feinstein and Senator Grassley.  Photo from PBS NewsHour

The folders were assembled in a bit of a rush, because I didn't have a lot of notice that I was going to get to attend the confirmation hearing. But they held information I was absolutely proud to carry and deliver, including:

• Jim's and my testimony. I have sent our testimony about how we learned about Grace's fetal anomaly, subsequently terminated the pregnancy, and how it was to undergo this in the state of Missouri in letter format a few times when there are bills being evaluated, and so on. Jim shared his testimony when he testified against HB 757, a 20 week abortion ban being proposed currently in Missouri. You can read the bill here. You may notice that the bill does not have exceptions for fetal anomalies. It is also scientifically inaccurate according to five doctors we've talked to so far, all whom independently said a fetus doesn't feel pain until 28 weeks, not 20 as the bill asserts. So HB 757 is a great example of a bill being both based on false and/or disregarded medical science (where the law is designed to allow politicians decide when a fetus feels pain over experienced medical professionals that specialize in this), and without fully considering everyone that might be impacted by it. 

You can watch Jim's heartbreaking testimonial and the responses here (starts immediately): 

Missouri Progressive YouTube Channel

• My Op Ed in the Washington Post. Senator Feinstein referenced my Op Ed in her opening remarks, so I felt it was important to include.
• Others' Stories. This was a big one. We are not the only people that have gone through this. In fact, on an infertility support group that I participate in, of the 130 members, at least 3 other women have had to terminate pregnancies for medical reasons due to fetal anomalies. Once I joined Ending A Wanted Pregnancy, an amazing support group for women that have faced similar circumstances and have had to, like us, choose the the "best" from unimaginable options, I found other women that had shared their stories too. I highly encourage you to read the stories that I brought with me to Washington D.C. here: 

While each circumstance is different, the common threads of utter shock upon the news of a fetal anomaly, feeling 100% that termination of the pregnancy was the best option, government interference and astronomical expenses show up in nearly each story. 

I gave the folders to Senators, legislative counsel representatives and other individuals where their understanding of the issue and its impact is very important; these are some of the people that need to know the realities of who these laws fully affect and in what way, so they can be enabled to support and/or make different policy decisions in the future. I know it won't change every mind, but I am very hopeful that raised awareness will help in even a small way. It's discouraging to think that a lawmaker would know of our circumstances and still choose to pass a bill that makes carrying out our decision, made out of parental love, even harder, but at least they will have been informed rather than just unaware. 

I am grateful for the opportunity to have been able to personally hand these packets to Senators and other individuals of great influence. Being invited to Judge Gorsuch's confirmation hearing is a once-in-a-lifetime opportunity, and I am still overwhelmed 2 weeks later. Being in the room while people like Sandy Philips told the story of her daughter losing her life to gun violence in the Aurora, CO theater shooting was one of the saddest privileges of my life. The impact was overwhelming, and I wasn't the only one moved to tears by her testimony.

Watching testimony like Sandy's as well as watching the Senators interact with each other and with the witnesses served as a great reminder that we're all human beings. We all have feelings and senses of humor and things that outrage us. Many of us are really putting ourselves out there hoping that in exchange for letting people evaluate and assess us based on what we're sharing (even Sandy was subject to some of that), that the payoff will be educating some people and bringing about some change. 

I am grateful for the opportunity to share my story, and to the other women who have so bravely shared their stories. We are all possibly subjecting ourselves to having our accounts of their darkest days ripped apart by strangers, all for the chance to hopefully educate the public and our elected officials on the realities of later term abortions, and to hopefully help usher in some change. That's absolutely the hope of every single person that shares. That's how strongly we feel about it. I can assure you the attention we garner is more negative than positive, and some days it's hard to keep going. We share to hopefully help prevent other families from facing at least the legal and stigma-related pain in the experience.

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Do you have a story about ending a wanted pregnancy? Please feel free to contact me. Every single story helps make a difference!

Our Story in Al Jazeera, and Watch "Abortion: Stories Women Tell" Documentary on HBO

We have two big updates today! 

Al Jazeera Article

Our story and experience, including the trip to Washington D.C. to attend Judge Gorsuch's confirmation hearing and meet Senator Feinstein, as well as some ideas around what we want to do next are included in this in depth article by Al Jazeera English (written by Massoud Hayoun). 

American women share the stories of their abortions

Last week, Robin Utz went to Washington. Utz, an American woman from the Midwestern state of Missouri, arrived there during the confirmation hearings for President Donald Trump's choice for the nation's highest court, which Trump has indicated he would like to ban abortion in the United States.

Abortion: Stories Women Tell

Additionally, I am eager to see Abortion: Stories Women Tell on HBO tonight at 7 pm CT. It looks incredibly relevant especially since it features individuals on both sides of the debate (which I am always interested in) in Missouri. You can see a preview and read more about it here:

'Abortion: Stories Women Tell' is the documentary America needs

The opening scene of Tracy Droz Tragos's stirring documentary Abortion: Stories Women Tell, shows the Missouri state capitol fill with the chant: "All in Christ, for pro-life." Back in 2014, supporters of a proposed extension of the state-mandated waiting period for an abortion-as well as those protesting against it-crowded into the capitol building in Jefferson City.