Wednesday, June 25, 2014

A Summer Spent Elsewhere

Beth Cousens Consulting will be up and running in the most professional sense in the coming months.
I'm working now on a different project, which you can read about here, and which I post about in the next pages.

Thoughts about Assisted Fertility

I met my husband a month shy of my 37th birthday. Four or so years before, I had made a decision that if I hit 37 without a partner, I would start looking into having a child by myself. In a way, I met J. at the worst possible time in that timeline: too late to let us have a baby during my (more) fertile 30s, too early to have begun the process of child-having by myself. So, we were stuck, fertility-wise. After dating for a while, and an engagement, we would end up thinking about child-having only when I was nearing 40.

We knew we could hit some bumps, or even were likely to hit some bumps. In the end, trying to have a child dominated the first years of our marriage. We were in pain often. With most of our friends either already parents or having children, we felt alone most of the time.

As we went through the process, I wished most for validation, information, and the opportunity for conversation. The web offered some of this, but it was also impersonal, hard to navigate, and overwhelming. I needed personal teachers and coaches. As the months went on and I talked more about this with people I often heard of different individuals who had similar experiences, and that was incredibly helpful, but a community and such individuals in the same place were also too hard to find and often without invitation to approach.

This, then, is a list of the decisions that we made, of what happened and what we did and why, and of how it felt, shared with deliberate hope that through social media, it is spread widely to the benefit of others. If anyone reading this wants to email or call to talk more, I (and we, with my husband) are happy to do that.

(Note: This is not to say that what we did was right and everyone else is wrong. This is simply one image of how all of this worked for one couple, meant as a source for information, not a set of recommendations.)

  • It took us about eight months to get pregnant the first time. We felt lucky that we could get pregnant. But when the pregnancy ended after ten days (3.5 weeks in pregnancy terms), our luck did not matter – getting pregnant and staying pregnant, we felt, were two different things.
  • That first miscarriage was shocking. It had occurred to me that I might not get pregnant but not that I would lose pregnancies. I didn't know very many people who had lost pregnancies (I thought). I was devastated for weeks and found it hard to be around couples with kids. I went to a baby naming of a dear friend and basically ran out after the ceremony, my husband screening me from well-meaning friends. I began therapy. I began yoga. I tried to find things to distract me.
  • It was a year of tracking ovulation and feeling overwhelmed by uncertainty and failure when we began to look at IVF. We went to the two primary clinics in San Francisco, the local teaching hospital and a clinic that reminded me of the office in the TV show Private Practice, with cucumber water and a sweeping view of the Pacific Ocean and Alcatraz. At the private clinic, we saw a doctor that my therapist recommended, who wanted to move immediately to IVF. We liked him; he was to-the-point and rooted his ideas in empirical data. But we were not sure that we wanted to move immediately to IVF and wanted to talk options. He was reluctant. I saw an acquaintance in a grocery store and spilled all of this to herdid we want to do IVF? Did we trust this doctor?and she reminded me that if we didn't feel comfortable with the doctor, we should go somewhere else. Also, I didn't need the cucumber water, and the other clinic was down the block from our house. It was just logistically easier to get to the teaching hospital, and this wasn't unimportant.
  • At the same time, we made phone appointments with everyone we knew who had challenges with unwanted fertility. We asked them to walk us through their stories and their decisions. Even once we knew what we would probably do, it was incredibly helpful. We began to understand the various routes through this maze, the extent to which there are different options, and how many stops there might be in this experience before we actually get to “baby,” to the real goal.
  • The phone appointments were helpful also because we got to spend time talking about this – and we needed time to talk, reflect, and process. We carried this story with us all the time, but interacted with most of our friends around regular life stuff. The details of what it felt like to be engaged in this project, or to carry pregnancy loss around – it didn't feel like anyone wanted to hear. Often I felt that I was living two lives, one in our apartment with my husband, and one public life with friends and colleagues.
  • During this process, I began to realize how tentatively I was making decisions. I looked frequently to others for information and validation. (When a story ran in the local Jewish paper about a memory garden for fetal loss, I called a few of the principals involved in the story to ask them how they chose their fertility clinic.) Perhaps my most significant lesson learned from all of this is that I was constantly looking for the best answer – which doctor to choose, which intervention to try – but I'm not sure there are any best answers, and I found few right answers. Given my temperament, this was incredibly hard for me to live with. (I knew it would continue to be hard through pregnancy and parenting, and sure enough, it has been.)
  • At the same time that we went to the private fertility clinic, we went to a public information session at the teaching hospital. This was an incredibly detailed introduction to IVF, meant more for individuals who were beginning the IVF process and less for those considering their options. It was cold and highly medicalized. I left terrified and strongly considering adoption. I could not imagine putting my body through the shots, the procedures, and the influx of drugs. Somehow, I accepted that if I wanted a biological child – and for whatever reason, I did, although I did some soul searching on this, too – this would be the path. It took a period of acceptance, though, that lasted, truthfully, until I was pregnant.
  • A first step in the IVF process is checking to see how many follicles a woman grows during a typical menstrual cycle. Just after we did that at the private clinic, I got pregnant a second time. I was terrified and also incredibly nauseated. I was pregnant for about ten weeks. I spent most of that time on my couch, trying to get work done, but mostly hiding. I was scared to be happy, scared to talk to friends because I didn't want to tell them I was pregnant (and then have to untell them), and physically ill.
  • We found out that the pregnancy wasn't viable when we went for a typical 10 week OB appointment and a kind midwife scheduled us for an ultrasound (medically unnecessary, but imperative to our sense of calm) the next day. Serendipitously, there was no heartbeat; the pregnancy had probably ended a few days before. I was turning 40 that weekend. On the way home from the ultrasound, my husband told me about the surprise party he had planned. We went for our annual birthday hike to the beach talking about our options, and I remember trying not to focus on the cells inside me that were no longer alive.  I had a D&E the following week rather than wait for them to leave spontaneously.
  • We immediately scheduled an appointment not at the private clinic but at the teaching hospital, with a doctor who friends were seeing who specialized in first trimester miscarriage. On the off-chance that this wasn't age-related, we wanted someone who could help us address other possible causes. We got an appointment for ten weeks after the miscarriage, which seemed a lifetime later. In retrospect, my body needed a chance to heal, but emotionally, those ten weeks were exhausting.
  • I began also to look at other therapies, particularly at stories of individuals who became pregnant through non-medical means, using acupuncture, food, yoga, etc. And, I tried to learn about medical practitioners who work on fertility using means other than ART. Ultimately, I began acupuncture and tried to be careful about what I ate – no caffeine, alcohol, lots of vegetables – but I drew the line at wheatgrass and daily yoga for fertility. I was making myself crazy with the possibilities, that is, with all of the work I could be doing to strengthen the quality of my eggs. And, the unpredictability of it was hard: There was only vague research demonstrating the links between these therapies and fertility success, and even the practitioners themselves suggested that the therapies were not foolproof. When the therapies started to make me feel more bad than good, I started ignoring them.
  • We met with the doctor at the teaching hospital. We immediately felt comfortable with her and appreciated that she did not see us as having only one course of action but instead laid out options and related chances of success. By then, though, we felt that we would do anything to lower the chances of another miscarriage. After some thought, we decided to throw all the resources we could at having a healthy baby in as few tries as possible. This would be expensive – IVF with pre-screening of embryos – but it would buy our mental health in a way that an IUI cycle, with lower chances of success and higher chances of an embryo implanting that would be genetically non-survivable, would not.
  • In retrospect, the actual IVF cycle went quickly. At the time, particularly as we began the cycle, all I could feel was fear: at the shots, at building my work schedule around it, at it failing. I'm not sure that I ever got used to the entire effort of shots and daily ultrasounds.
  • In fact, I doubted the project the entire time, wondering if we were spending money needlessly, if we should have stuck with natural methods and been patient. I wish I could have been nicer to myself. We had made a decision that optimized our chances to have a baby. It was expensive and emotionally and physically challenging. It wasn't the only decision we could have made. But it wasn't the wrong decision, by any means.
  • We did two cycles of egg retrieval, one after the other, before we did any kind of embryo transfer. We decided that we wanted to optimize our chances for a baby and that we wanted as many embryos as possible when I was as young as possible. On the other hand, we didn't have unlimited resources and couldn't see doing more than two cycles. Both cycles together produced four healthy embryos. Many eggs (follicles) were retrieved, producing a total of 13 embryos with both cycles (My problem was not that I had very few eggs but that the egg quality was poor). Those 13 went to the screening clinic, and four were genetically stable. I felt incredibly blessed to have four but was also thrown by the number: With only four out of thirteen embryos being sound, it seemed validation that if we had tried to have a baby naturally, we would have likely had miscarriage after miscarriage.
  • We couldn't implant an embryo for another three months, until after I had a small procedure and healed. That was a bit of a surprise, and we felt that our clinic did not handle communication around this as well as they might have (this is an understatement). We didn't trust our nurse after that (and actually insisted on switching nurses) and I was miserable, bitter and resentful. We tried to distract ourselves during the three months. I declared it the “Summer of Food” and got reservations at good restaurants with lots of different girlfriends. We took vacations and tried to ignore the thing that seemed to be hanging over us.
  • When we started to get ready for the embryo transfer, taking the shots and so on, it seemed anti-climactic. The shots were more intense but fewer and there were many fewer office visits. The procedure itself was minor. I stressed repeatedly about all of it: How could I maximize this opportunity to get pregnant? What should I be eating, or doing, that day and the weeks before? When should I get acupuncture? How much bed rest should I plan for? Could I exercise? There were not straight answers to any of these questions and I obsessed and obsessed, searching the internet and calling friends. I finally realized that, again, there was no clear path and that, ultimately, I was trying to control something that was uncontrollable. I decided to pamper myself the day of the procedure, going to yoga, getting a facial, and going to a favorite restaurant with my husband. It was the right decision: Going into the procedure I was more relaxed than I had been in months.
  • The two-week-wait seems like a blur, a mix of activity – planned deliberately – and moments of anxiety and internet-googling to look for hints that I was pregnant. Ultimately, when I was told that I was pregnant (told, ha, I also took a pregnancy test in a coffee-shop bathroom, shaking when I saw that it was positive), I was surprised not to feel only joy, to feel that we still weren't at the end. There were more blood tests and a first trimester to get through, and even though we had screened the embryo for genetic abnormalities, the screening was not fool-proof. There was a chance the pregnancy could end. We waited to tell close friends until after the 20-week ultrasound and waited even longer to tell others, somewhat convinced that this wasn't really happening.
Ultimately, I was nervous for about thirty weeks, or maybe even until he was delivered, to the point where when I entered large rooms of colleagues and acquaintances, obviously pregnant, I was aware that in three months I might have to share bad news. I waited to write this piece, even, until after his delivery – the worst time to write! - because I was not convinced that this experience with infertility is over.

In many ways, though, it is over, and that feels incredibly strange. We were very lucky in that our experience was relatively short and resulted in the goal: a baby. The pain of the miscarriages and the uncertainty of the process are paled by the joy I now feel at holding my baby in my arms. At the same time, the pain hasn't gone away. This is part of me, part of our story and of our child's story. I feel acutely aware that if we go for #2, we will enter this project and its uncertainty and physical stress again.  And I know that we were lucky much more than we were unlucky.

A friend shared his own mantra in the middle of this project: It will be okay in the end. If it's not okay, it's not the end. (He added – It's not a competition, and, It won't end how you think it will.) It kept me going, often. We would find our “okay,” somehow. And we did, in our healthy baby, but also in that I'm almost okay with this being part of our story. I've almost accepted that this is where we've been, where we are, and I get now that time will continue to help and heal.  





A Communal Emphasis on Child-Having

Spring 2013

My husband and I are trying to conceive. It's been several years and has included the ups and downs of miscarriage and medical intervention. When relevant, when speaking to someone newly married and under 35, or with children or grandchildren in that situation, or who asks me about my child-having journey and what they can do to help, I want to scream, "DO NOT WAIT. IF YOU WANT CHILDREN, HAVE THEM NOW."

I turned 40 in the days after we found out about our second miscarriage. It is not unlikely that we will have a child; in fact, I feel optimistic. But the three children that were my intent as a younger woman seem impossible, now. And, our pregnancy journey is already long, exhausting, medically invasive and genuinely expensive. We may use an egg donor or adopt, each of which I feel lucky to even be able to consider, but each of which are options to grow accustomed to. And, we may choose between owning a house and having a child.

I have had a lot of "what if" kinds of thoughts: What if I had frozen my eggs? What if I had worked harder to marry younger? What if we were certain we could afford IVF and the rest of our dreams? In any of these cases, would I have more children? Would I have them at a younger age? Would I be less tired and more healthy when I eventually become a parent?

Marriage and childbirth are loaded in many communities, no less so within Jewish life. Not all have the freedom to marry legally. Not all want children. Communities are not always welcoming to "non-typical" families, including single adults or couples without children. Jewish law, halacha, and assisted reproductive technologies are not always in harmony.

These are truly complicated issues, and while they deserve full attention, I want to focus on other ideas related to child-having.

Because when people ask what they can do (after my miscarriages), or they ask how I am, I don't scream, or even say matter-of-factly, Please start having children now. I keep silent. Our society is structured so that it is essentially not my business who has children, when they have children, and how they have children. The taboos of talking about how people had children, if they miscarried, why they might have had only one child - these taboos are deep. They are also genuine roadblocks to the spread of information.

I always wanted kids and imagined my life with them. If I had thought about it at all, I would have imagined the actual having of the children as something that would happen easily, not something that I needed to pay attention to. But I didn't think about it; my mind was elsewhere and I was unprepared. When I was 30 and perhaps should have frozen my eggs, I was in graduate school, pasting together a living from part-time jobs, having come to school after earning an entry-level salary. If it had occurred to me to freeze my eggs, I would not have had the thousands of dollars needed. I had no understanding of a future. Freezing eggs asks that we pay an annual storage fee, possibly for dozens of years into the future. At 30, I could see months, not years ahead.

At the same time, I did not really understand the ramifications of trying to bear children as an older woman. When I was younger, I had plenty of mentoring opportunities. I went to sessions at conferences for young professionals, was matched one-on-one. I had close colleagues, sometimes decades older than me, who were plenty concerned about my romantic life. But no one ever talked about how to have children. As a result, I'm not sure that, when it was biologically or medically relevant to me, I knew the possibilities that were open to me.

We should strive to make it as easy, easy, easy as possible for women and individuals in any situation – in their late thirties and forties, gay and single – to have children, thereby building the Jewish community in imperative ways.

Four calls for action


Offer financial assistance for assisted reproductive technologies


In most states, health insurance does not cover assisted reproductive technologies (ART), particularly the more expensive technologies. Sometimes, couples try less expensive but less successful technologies, because they can afford them or because their insurance covers them; these less successful technologies might work but they might not, and they can postpone the women's age of childbirth and exhaust potential parents, exacerbating the problem. Like me, many twenty- or thirty-somethings do not even consider freezing their eggs because the cost is prohibitive within the context of their day-to-day expenses. In the 1970s, Jewish Family Services in a variety of communities launched adoption services, opening up the black box of adoption for families, helping families find Jewish-born babies when possible, providing a trusted service in-community, and subsidizing the cost. Similarly, a few Jewish Family Services are beginning to work in the area of infertility. Too few, though, have the resources to offer financial support. The costs of ART can be significant, but Jewish life holds significant philanthropic dollars, particularly for the purposes of Jewish continuity. By offering financial support of any size, Jewish organizations would subsidize Jewish communal growth and validate infertile adults' incredibly challenging journey.

Make talking about fertility a priority


Medical professionals own the complicated web of facts and figures that is the field of ART. This is reasonable; the information is multi-faceted and driven by complex scientific research. But, particularly because most medical offices work independently, this means that each medical professional can offer a different opinion, and individuals need to swim through the complexity,playing detective, identifying different sources, putting together facts and ideas, trying to determine what is best for them, and usually doing this analysis in their own living rooms, away from the bias – but also away from the expertise – of professionals. Sometimes, potential parents' analysis moves onto web sites and into chat rooms, but these virtual resources are often not a satisfactory replacement for a confusing, lonely, and emotionally fraught process.

Well-networked, Jewish organizations can collect and present information about fertility, amassing experts with different ideas, putting together information evenings that allow interested potential parents to explore options without the pressures of shopping for “right” decisions. More than information, such evenings and workshops can offer ideas embedded among the riches that Jewish community offers: a larger communal, spiritual, and emotional context of support.

Talking about fertility needs to happen with those seeking parenthood immediately and also with those who want one day to be parents. Information sessions about ART can also be offered for younger individuals, particularly women in their twenties who have eventual marriage but not immediate parenthood on their minds. Jewish organizations should put such information in front of individuals' minds and hearts, again, making it easy for women to see their options early, at the right time.

Some Jewish Family Services offer support groups for infertile adults; more should, and these support groups should be well advertised and linked to fertility clinics so that they are easy to find. Kveller.com has a series on infertility, and this is helpful, but internet support can be – literally – cold comfort. This conversation cannot be kept in the medical and therapeutic realm, and it needs to be personal. Rabbis and Jewish educators seem rarely to approach this issue in public and outside of pastoral relationships, particularly from the bimah. Those who interact with twenty- and thirty-somethings and with parents – rabbis of synagogue young adult groups and early childhood educators, for example – need to be able to talk openly about resources for primary and secondary fertility, to make it easy for those suffering to approach them and ask for guidance and support.

Create public ceremonies for mourning fetal loss


Mourning fetal loss within a Jewish context is challenging. Jewish law, halacha, does not acknowledge fetal loss as death, which I appreciate. At the same time, recognizing the gray in this part of life, for hundreds of years Jewish women have acknowledged that even without official death there is room for grief. Private rituals for women or, now, families to mark loss are collected in Four Centuries of Jewish Women's Spirituality1 and on ritualwell.org.

But what about public conversation? I recently was invited to a ceremony in a church, sponsored by home-birth midwives, to honor the "unborn." I was compelled by the concept but also wanting it to be in a such a different form: I wanted to have this conversation and ceremony in my space, in a Jewish space, with community members whom I see every Shabbat, with people with whom I have an ongoing spiritual relationship, using Jewish symbols and ideas. Religion is exactly about each of these things: using the familiar space, symbols, and community or family to mark, celebrate, or mourn time. Our communities could develop space to hold and manage these rituals and ceremonies, acknowledging that fetal loss is a part of life and that we - as a community - are in the work of building families together. Rabbis can talk of fetal loss from the bimah, making it safe to acknowledge out loud, even if – according to Jewish law – kaddish is not said for these losses.
Progress is this area is beginning. In San Francisco, a Memory Garden for fetal loss is held at a local Jewish cemetery, creating the space for families to honor and mourn their loss. Abby Michelson Porth, one of the founders of the Garden, discusses the importance of this Garden as linking emotional loss, which might happen in Jewish space, and the physical or medical loss that typically happens within the medical realm. Media coverage of the Garden has stressed the extent to which Jewish women have felt silenced about their fetal loss.2 By creating public spaces and opportunities for mourning, we invite possibilities of conversation. We begin to break down taboos around infertility, miscarriage, and pregnancy loss.

Build an Institute for the Jewish Family


As described, the “family” as an issue of conversation and investment is inherently political. This, perhaps, is less about Judaism and more about America, or maybe it is just part of being human.
Still, this investment is no longer something to set aside as too controversial or too difficult to measure. Caryn Aviv recently wrote an impassioned letter to Jewish communal mega-philanthropists; no one, perhaps, could say or has said it better. She called for a “Jewish National Reproductive Fund” as “an act of Jewish vision and courage.”3 Indeed, it is. Let's put our stakes in the ground and say, We believe in Jewish children. Let's not put pressure on those who are reluctant to have children, and let's continue to make sure that single adults are as welcome in Jewish life as families of any size are. But let's also recognize that Jewish children will create Jewish community, and that Jewish adults need help having Jewish children.

The Hasidah Foundation4 launched over a year ago with the goal of supporting adults' use of ART. We need even more than that. We also need thought leaders around the Jewish family, those who are advocating for local conversation and work related to family growth, fertility, and family loss. We need someone to consolidate smart practices among Jewish Family Services and synagogues, to write and teach curricula for Jewish fertility/unwanted infertility support groups, to keep this on the agenda of these organizations. We need articles in newspapers and uncomfortable but safe conversations in 20- and 30-something spaces. We need Jewish men and women to know about their options, and we need their options to be easier.

Jewish community has many moments when it is at its best. Right now, to be blunt, some of its weakest moments coincide with the worst moments in some of our lives. Like a journey through infertility, this effort can seem overwhelming. Yet, it begins in conversation, in individual leadership, by reaching out. It needs financial investment, but it begins with awareness, with Jewish communal professionals and leaders learning about the issues and then making space for conversation and program. Start by asking friends, colleagues, and acquaintances about their own experiences with infertility. Open up questions. What would they have wanted? Needed? What did they look for that they could not find? Begin by talking. See what ideas grow, and the pain won't go away, but it might be easier to take.




1 Ellen Umansky and Dianne Ashton, eds (Massachusetts: Brandeis University, 1992)
2 “Memory Garden: Soon, a Place for Parents to Reflect and Meditate” j Weekly November 8 2012 http://www.jweekly.com/article/full/66974/memory-garden-soon-a-place-for-mourning-parents-to-reflect-and-meditate/ retrieved May 30 2014.
3 "Abandon Hope? A Polemic and a Plea” http://shma.com/2014/03/abandon-hope-a-polemic-and-a-plea/ retrieved May 29, 2014.
4 "An Organization to Help Those Struggling with Infertility” http://shma.com/2014/03/an-organization-to-help-those-struggling-with-infertility/retrieved May 29, 2014. Kayama Moms is another advocacy organization (kayamamoms.org), focusing on Israel-based single mothers by choice.