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.

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 "

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!