Are We Going To Try Again?

Four years. That's a long time. That's a bachelor's degree. A presidential term.

That's how long we've been trying to have a child.

It's included a lot:

• 3 fertility specialists
• 2 rounds of intrauterine insemination (IUI) with Clomid (a drug that turns me into a wildebeest)
• 2 reasons for infertility diagnosed
• Literally hundreds of shots in my abdomen and rear end
• 2 rounds of IVF, resulting in 29 eggs total
• 3 intralipid infusions
• Literally dozens of pregnancy tests

An intralipid infusion

A bruise from one of my shots in my abdomen

The progesterone shot that goes in my rear every day

Just one of my shopping trips to get pregnancy tests. These are cheap and pretty decent, btw.

As a result of all of this, we got 4 total embryos. 

A five day old embryo, called a blastocyst

We got two embryos from our first round of IVF. We didn't get pregnant with the first one, but did with the second, and were thrilled. At nine weeks the heartbeat we'd previously been thrilled to see was suddenly gone. I will never forget Jim clutching my arm and both of us silently crying while the ultrasound technician searched in the dark room for the heartbeat.

They got two more embryos from our second round of IVF. We got pregnant with the first one, and that was Grace Pearl. We terminated our pregnancy at 21 weeks, 5 days, due to discovering she had a fatal fetal anomaly. Grace is the reason for us telling our story and for this website.

There are constantly people asking us what we're going to do. Will we try again? What about the last embryo? For National Infertility Awareness Week, I wanted to share an update.

To answer that, there is one more letter that we gave to Senator Dianne Feinstein when we met her in Washington D.C. I haven't shared this before now because I wasn't ready. It was this letter:

Dear Senator Feinstein,

I wanted to provide an update on my husband’s and my journey to have a family:

When Jim and I did in vitro fertilization (IVF) in March 2016, we were blessed with two 5-day embryos, both girls as we learned through pre-genetic screening, which we had performed to avoid another miscarriage. We were utterly delighted to have two embryos to attempt to get pregnant with, and one of them was implanted in July 2016: Grace Pearl. Unfortunately, we learned at Grace’s 21-week anatomy scan that she had bilateral Multicystic Dysplastic Kidney Disease, which is 100% fatal, and we terminated the pregnancy for medical reasons, which is documented in our included testimony and media.

While it felt far too soon emotionally to be pursuing pregnancy again, my husband and I were terrified of the legal limitations that are being proposed, considered, and potentially passed in our state of Missouri and nationwide. For instance, a 20 week abortion ban is being considered in Missouri, and a personhood law has been proposed.

We decided we should try with our remaining embryo as soon as was physically feasible. What if our remaining embryo had the same disease Grace did, or another fetal anomaly? We feel so strongly that we made the best and most loving choice for Grace that we would want the same option for her sister should she encounter similar problems; unfortunately our state's laws are not written or implemented in a way that gives families like ours the legal right to make these decisions past 21 weeks 6 days, despite the fact that problems in pregnancy can and do occur far later that than.

We learned on Wednesday, March 22, 2017 that our final embryo transfer did not result in a pregnancy. We are devastated, and do not know what the future holds for us. We are now mourning this loss in addition to our loss of Grace Pearl.

If we do pursue a family again, we hope that we will legally be allowed to make the best choices for ourselves and our family. We are the illustration of the fact that starting a family is not as predictable or easy as many think, and that instead it can be a heartbreaking process full of defeat and loss. We do not need legal limitations to worsen this experience for us. It’s hard enough as it is.

Sincerely,

Robin

Maybe you're reading this knowing a few other people who have told you about their infertility, and perhaps it has already resolved for each of them. We hear a lot of stories about never giving up, 'I have this one friend that they gave up and then bam, it happened!' or 'I have another friend who did IVF and then got pregnant by surprise right after with another one'. These things are well-meant, but aren't going to happen for us. They simply aren't. We cannot get pregnant without intervention due to the nature of our infertility diagnoses. 

A lot of people share about infertility more publicly after it has resolved for them. Because of Grace Pearl, and how everything has unraveled for us, instead here we are, living our lives right in front of everyone. 

And we're stuck. Our last embryo had a 60% chance of working, but it didn't. And now we're out of embryos. And IVF costs a lot of money. And we're just so, so sad. 

We are considering adoption again (which we looked into extensively in the past, and honestly aren't sure we can handle after the rollercoaster we're already on). We are considering trying again with our own genetics because there is nothing technically wrong with them... we've just been supremely, shockingly unlucky. We're considering donor embryos.

We are considering giving up and no longer pursuing children.

I share all of this to let you know that while you may hear about infertility after a happy ending has arrived for someone, that happy ending doesn't always come. Sometimes you get too many bruises along the way to keep on going. Too much heartache, too much dread and hesitation and pain, and you just get paralyzed in indecision. This isn't even my nature, but that's where I am.

I cannot imagine putting ourselves through the uncertainty and lack of control of the adoptive process, nor the thus far absolutely anxiety-inducing and downright punishing process of being pregnant again.

But the idea of giving up and changing course and not having children, while it would be ultimately ok as Jim and I are unbelievably, after all of this, very, very happy together, it feels like slowly walking into a cold pool. Every step I take further in, there's a new shock to the system. Eventually I'd get used to the temperature, but it's not what I wanted. 

I have no idea when we'll decide, or what we'll decide. I hate being in limbo AGAIN. Have we not been through enough? Are we just not supposed to have biological kids or kids at all and I just won't get the message? Do I even believe in that sort of thing? Is it worth the risk to try again when all we have had thus far is heartache? We don't know what to do, and the only answer is to give it more time. 

We aren't the only ones in this position. This is what infertility looks like. An extreme version, but we're not the only ones. There are so many stories out there, and they all deserve to be told and heard. Every single one is hard, heartbreaking, and deserves care, compassion, and understanding. 

Infertility: Have questions? Ask here!

Along this journey through infertility, we've hit a lot of situations where we learned that society doesn't know a ton about it. We sure didn't before we started trying to have a child. Frankly, I had to re-learn all about fertility and conception and ovulation and timing and all that stuff that was a hazy memory from school sexual education classes. It's not nearly as easy as people think to have a child even if you're not infertile. And even though 1 in 8 suffers from infertility, many don't talk about it so it continues to be a subject much of the population knows little about. That's why the theme of Listen Up! is so important. We all need to be talking about it more.

What are common causes of infertility? What is IVF? When and how does a person get diagnosed and when should they see a fertility specialist (a Reproductive Endocrinologist)? 

You can find answers to some of these questions here, but also feel free to ask me. For today's National Infertility Awareness Week (NIAW) post, feel free to ask questions. 

What do you want to know about infertility and/or our journey? 

 

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.