Sister egg donation musings

Still working over here on the veeeerrrry sloooooow process of getting my sister screened as a potential egg donor for us. She's getting some blood work done locally in the next few days and Will and I are slated to meet with a psychologist Monday to talk about what we (and my sister) should consider before moving forward.

We saw my sister this weekend and she is still cool as a cucumber about donating her eggs to us. Basically said she made the decision a few years ago before she approached us the first time and hasn't flinched or second guessed since then.

While we're on the topic of sister egg donation, I wanted to share a New York Times "Modern Love" column from 2010 that Mommacommaphd recommended.


I like some of the questions it poses about using a sister as a donor (in this essay, it's for her gay brother and his partner): "She was young and unattached. She wanted her own children but wasn’t ready. So was she prepared for someone else to have her child? And how would she explain this particular brand of baggage to a potential husband someday? Most of all, would she be satisfied always being Aunt Susie to this child and never, you know, the m-word?"


I wish I could follow this couple and find out how it all works out for them and their twins. 

But just to read this slice of their life was really nice, and I recommend it for anyone considering using a relative as a donor. Made me feel like it's not a freakish choice but could actually be, well, just lovely.


Mo


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What makes a family?

I read and really liked this New York Times article called "Who's on the Family Tree? Now It's Complicated" about the ever-evolving concept of family with the burgeoning use of adoption and third-party reproduction and more fluid relationships among intimate partners.


I liked how one family described that they have "the family tree" and then they have "the day-to-day structure of the family" and the idea that some families now organize their family tree into two separate histories: genetic and emotional.


I also liked that thought is going into how this impacts teaching in the classroom. One teacher is quoted in the article as saying, “You have to be ready to have that conversation about surrogates, sperm donors and same-sex parents if you are going to teach the family tree in the classroom.” Which made me smile. I like to envision that by the time our child is old enough to be grappling with any of these issues that perhaps there will be so many other children through embryo donation, adoption, surrogacy, and the like, that it will not be a situation that will make them feel different or put them in an odd situation in a classroom...say, should they be asked to draw a family tree....or like in my sister-in-law's prep school biology class, perform a PCR DNA analysis on themselves and their parents (yikes! Hope those kids have already discussed their origins before this happens!) 


It's on our minds as we think about next steps: How do you make a family? How do you define love?


So passing along...in case this is of interest to you, too...


Mo


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Two third-party reproduction articles on the occasion of Father's Day

I saw both of these pieces today in the New York Times and found them really moving and thought-provoking, each in their own way.

The first, A Father's Day Plea to Sperm Donors, is an essay written by an 18-year-old young man conceived by his single mom and an anonymous sperm donor on what it's been like for him identity-wise and how he's handled the big question mark that is one side of his genetics. His essay calls for donor gamete children to be able to contact their donors and know about their origins. And his yearning is palpable: "I am sometimes at such a petrifying loss for words or emotions that make sense that I can only feel astonished by the fact that [my father] could be anyone."

The second, Baby Makes Four, and Complications, is a long piece about an unconventional family made up of a single mom and her very young son, and on a part-time basis by the boy's biological father, who is a gay male friend in a relationship, and who views the child not particularly as his son but sort of as a nephew. It's a somewhat self-indulgent psychological portrait of what it means to be a family - and how the concept of family is evolving and changing beyond traditional definitions. The plan is for this child to know at some point that his "uncle" is actually his father. Who knows what his reaction will be to this head scratcher. ("...Wait you're my biological father but you decided to take a role more like my uncle?!")

I liked both articles because they caused me to reflect on the choices Will and I are considering that might lead us to have a child who is not genetically linked to one or both of us. A child who might or might not know of their origins. It strengthens my already fairly firmly held belief that it would be psychologically easier for our child(ren) - if they come to us through third-party reproduction - to know as much about their donor origins as possible, including, potentially, the chance to meet their donors. It makes me think of the potential ramifications of using the donor embryos we have been offered. In that scenario, our child would be related genetically to neither Will or me, but would on the plus side be able to meet their genetic father and sibling (but on the downside never meet or know much about their genetic mother, since she would be an anonymous egg donor). And it drives home that if we go the donor egg route in the future that we would probably want to use an agency and specify an open donation arrangement so that our child could answer any identity-related questions they had when they get to an age (adolescence?) that those might come up.

I had a long and fascinating conversation last week with a bioethicist on my medical school faculty whose area of specialization is reprogenetics. Among many other things, we spoke about why people feel such a strong pull to have a genetic connection to their children - and where such a drive comes from. And she gave me a reading list (which I will share in a future post) of books discussing the ethics of reproduction and human genetics (PGD, microarray, etc).

Reading these articles today also reminded me of something. I tend to view my difficulty with giving up on a genetic child as a personal shortcoming. A limitation that is some sort of character flaw. (We've recently realized it is also the very real existence of our five chromosomally normal embryos. If they weren't out there, I think we'd be ready to leap off of the genetic track pretty rapidly. But they ARE there.) But it is not just my own comfort level with giving up on a genetic link that needs to be considered. It is also about our future offspring's potential feelings about that loss of genetic connection and what that might mean to him or her as they grow up. I don't want our children to ever suffer any pain or difficulty. And I hope that if we use third-party reproduction down the line that we won't be inadvertently causing our child some future strife or additional difficulties. I hope instead that they would take away the main message: that they were so, so wanted that we were willing to go to great lengths to bring them into our lives. That they are cherished and that we are just over the moon thrilled to be able to parent them.

Tell me what you think. How did these articles strike you? For those who have used third-party reproduction, how do you imagine any donor issues might affect your children down the line? Or am I the only one who thinks about these things?

Finally, Happy Father's Day - to now and future fathers.

Mo

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Grieving miscarriage and looking ahead

We continue to just feel our way through this, try to figure out what path makes the most sense and feels right in our hearts. It's hard. Our history of multiple miscarriages is hard, and the possibility of more loss has sometimes felt unbearable.

Today I saw this article in TIME, which says that even if we succeed - newsflash - grief over a miscarriage doesn't necessarily disappear. And apparently, the number of losses matters, in terms of how hard it is to shake your sadness. Thirteen percent of women who had one miscarriage or stillbirth* before a live birth were depressed nearly three years later. This rises to 19% for those with at least two losses. And rises again to 22% for those with four losses before a healthy birth.

I'm glad this topic is receiving national press attention, and I'm thrilled it's even being studied, since the psychological impact of miscarriage is such an underinvestigated area. I know, because I'm a clinician and a researcher, and I've tried to read up on it as a way to comfort and educate myself. But truly, I find none of these data surprising. Was it expected that loss, and in particular multiple losses, wouldn't have a longer/larger impact?

Reading this, of course, leaves me wondering what the rate of depression is of those who have six losses before a healthy live birth.

And even harder, but on our minds as we consider next steps on our journey, the very real question:

What if you never have a healthy baby? What then?

Mo

*and seriously? the researchers combined miscarriage and stillbirth as though they are one and the same and can be collapsed together? Bad researchers!!

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Did you see this article? Attachment in adoption

Taking a break from decision making for a day to ask if anyone saw this article in Slate by an adoptive mom about her difficulty bonding with her adopted Chinese daughter.

I cringed at the title ("I Did Not Love My Adopted Child"), mostly for this little girl who would some day perhaps google her writer mom's name and find it. And then think...what? What would it be like to read that as an adolescent?

But at the same time, I found aspects of the article honest and real and willing to grapple with issues that are rarely discussed, at least in public forums.

It's a question I've always wondered about when considering adoption (in particular, international adoption): Would I feel the same connection? Would I feel attached? Would the child feel attached?

And then beyond that, Am I a monster that this question even crosses my mind?

Being a psychologist, I've asked a couple of therapists about it and they've basically said, however the baby arrives, you love it with all your heart once it gets here.

That's certainly what I would hope. And it sounds good and Disney happy ending.

One of my former supervisors, a wonderfully warm clinical psychologist who adopted 15 years ago from Russia, chose to be very candid with me about his experience. When I asked him if he immediately loved the little Russian girl he and his wife brought home, he said no. He said he felt a desire to care for her physically because of her absolute dependence on them. But that the love part took awhile. That it was a few months later - when he let go of her stroller for a moment and it rolled a few inches forward on the sidewalk toward NYC traffic - that he felt the first surge of fierce, throw yourself in front of a bus, love. And I know he loves her the same fierce way now that she is an adolescent, as he fights hard to find the right educational and therapeutic environment to help her deal with emotional and cognitive deficits resulting from malnutrition and institutionalization as an infant.

But the article got me thinking. And made me wonder about people's experience with this.

What do you think about the bonding process in adoption? Is it the same? Is it different? How so? Any personal experiences you'd care to share?

I know it's a touchy subject - so if you'd rather comment anonymously (constructive comments only!) - go for it.

Mo

Hanging in there - thanks - and a @!#&$! article on egg donation

You guys rock. Seriously. Thanks for all of the supportive comments after my last post. It really helped to be reminded that many of you have also had your share of dark, sobbing moments and to feel validated that it makes sense that I might have a big cry from time to time. Geesh, that night sucked (just ask Will). But all that sadness is in there and it has to come out sometime. Seems to be lying dormant again, so we'll just let sleeping sadnesses lie for a bit, if that's ok with you.

On another topic, yesterday, I came across this article on egg donation on Slate.com ("The Egg Market: What determines the price of a woman's eggs? SAT scores."), and gosh, it really stuck in my craw (hmmm...moving from sadness to anger much?). Now, I'm not one to think we should necessarily have multiple tiers of compensation for ovum donation, but my take on this article was that it villainized seeking any specific characteristics in an egg donor.

A select quote to give you a bit of flavor from the piece:

"A market in lucrative traits is developing. Wealthy people are buying smarter babies [by purchasing selected donor eggs]. Even if your kids get the same private schooling, their kids will do better."

My immediate reaction? Oh really? Really? That's what's driving the market in egg donation? Sounds like fertile people might just start knocking down their local RE's door to get these preferred ova on board and start multiplying - just so their kid can beat your kid in the upcoming kindergarten chess tournament.

You've got to be kidding me.

Seriously, folks. If Will and I have to go the route of egg donation and lose the ability to have our own genetic child, is it so wrong if we attempt to select an egg donor somewhat similar to myself and Will in terms of intellectual ability or physical traits?

I get it that it would be kind of creepy if we only wanted a "perfect" child with gorgeous good looks and a stratospheric SAT score. But really, does it smack of narcissistic self-absorption if Will and I would prefer to select a egg donor who shares my very fair skin and almost black hair, or who has the genetic possibility to be similar to the two of us with our ridiculous overeducated background? The fact that between the two of us Will and I have four graduate degrees is - in addition to kind of embarrassing (what, are we hoarding degrees or something?) - basically a liability in my book for any poor, potential offspring. Oh, but future offspring, we would try to be good parents despite this!

I hated that the article didn't even mention once the loss that surrounds the need for donor egg, and the then ensuing (and normal! natural!) psychological motivation to reduce that loss - even a modicum of that enormous loss - by having a donor who resembles one a little bit physically or emotionally or intellectually.

Instead, the entire area of egg donation felt reduced to a market strategy, a cold Huxley-esque Brave New World, where selecting a donor is be all about competition and perfection and not about trying to create a family to love.

And that to have any preferences at all in physical or intellectual characteristics immediately means that you're trying to build a "better" child, rather than an attempt to try to be somewhere in the ballpark of the child that you might have had you not suffered the loss of the ability to use your own genetic material.

But those are just my not so articulated thoughts. What do you think?

Mo

You knew REs were well-paid, but did you know they were THIS well-paid?

Apparently, many specialists at private universities earn more than university presidents, including, you guessed it, your friendly reproductive endocrinologist.

From Sunday's New York Times:

"Generally, fertility doctors are among the highest paid. At Cornell, Dr. Zev Rosenwaks of the Center for Reproductive Medicine and Infertility received $3,149,376, and at New York University, Dr. James A. Grifo, a professor of obstetrics and gynecology, was paid $2,393,646. Both substantially out-earned their presidents."

Now, I'm torn when I read this. I love my repro-endo doc (who is neither Jamie Grifo nor Zev Rosenwaks, just for the record). I think he is extremely talented (although so far, not so successful with me). And I know he has spent years and years honing his expertise. I get that. And I want him to be well compensated.

But it raises the sticky question of whether reproductive endocrinology is primarily a for-profit business or a medical speciality. What is the mission of these practices, and is it congruent with that of the hospitals in which these departments are housed? Based on these salaries, I am willing to bet my left ovary that RE departments are among the biggest money makers in many university hospitals. And I suppose there should be some recognition of that in the form of compensation.

I suppose. But this seems just a wee tad out of control to me. Especially since these treatments are quite difficult for many to afford. Is the high price of IVF based on what these procedures reasonably cost or on what the market will bear? And if it is the latter, is that ethical?

What say you, fellow infertiles? Is there a problem with high compensation for REs? Why does it bother you, or not?

Mo

The IVF backlash has begun

From Tim Rutten's Op-Ed in the Los Angeles Times today:

"When the Nadya Sulemans of the world say, as she has in interviews, that they undergo these extreme, invasive, unpleasant, uncertain and expensive medical procedures because they "want children," that isn't really the case. If what people want is children...there are tens of thousands of children in our country and perhaps millions more abroad waiting for adoption. Thousands of others in our country are waiting for foster care.

The impulse that has made fertility medicine such a large and lucrative specialty in American medicine is about something other than children; it's about the narcissistic assumption that one is "entitled" to "the experience" of childbearing and, more to the point, the notion that, somehow, if your particular strands of DNA don't live on into another generation, the species will be poorer for it.That sense of entitlement and its enabling delusion are about a lot of things -- but none of them really involve children."

Now, I cringe at Nadya Suleman and her situation, but reading this op-ed, equating her actions with those of every woman struggling with infertility, infuriates me.

Infertiles, what say you about Mr. Rutten's words?

Feeling selfish? Entitled? Chock full of narcissistic assumptions? Because really, if we can't conceive children without medical assistance, we should just adopt, right?

Please leave your thoughts below - narcissistic, entitled, and otherwise.

Mo

The fate of the frozen embryo

Today's New York Times yields yet another infertility article, this one on the difficulty former IVF patients face in deciding what to do with leftover frozen embryos.

According to the article, more and more couples are struggling to decide what to do with remaining frozen embryos when they want no more children. They are choosing to do everything from freezing the embryos indefinitely (at a not insignificant cost) to donating them to other couples (rarely) to donating them to research to saying prayers over the petri dish when the embryos are thawed and destroyed.

It's difficult to know what one would do in this situation. Given our struggle to produce a single offspring, I find it almost impossible to imagine that our problem could some day become the potential for too many children. And we have learned very well, through hard won and bitter experience, that an embryo (even several embryos) does NOT equal a baby. Not even when you actually get pregnant with said embryo.

At the same time, we do not see these embryos as just a piece of cultured tissue. They represent the potential for human life. And in that way, they are (the words are loaded but I don't know better ones) somewhat sacred.

Will and I personally entered the frozen embryo debate when we met with the RE to tell him we wanted to do another fresh cycle this time (while having six embryos frozen at the 2PN stage from our last attempt).

I believe the RE's exact words were: "What do you want, a library of embryos?"

Ouch.

I suddenly felt like the RE thought we were aiming to collect vast quantities of our genetic material to keep in jars in various rooms in our apartment. Just to gaze at.

His words surprised us, and definitely gave us pause. After reflecting, we explained our reasoning (to ourselves and to him) thusly: that we want multiple children if possible - gosh, a whole family of them if we could. That we worry I am headed into premature menopause because of my chemotherapy treatment almost a decade ago for lymphoma. That we can actually afford another IVF cycle right now because I have - just for this year - a very generous insurance policy that has a special arrangement with my IVF center. We reminded him that we are Irish Catholics (lapsed and mortally sinning Irish Catholics because we're doing IVF, but still.) That for us, a family with several children would not be a bad thing. We'll be grateful for one, mind you, but a whole passel of kids would be fine too.

But reading the Times story today made me realize for the first time another major factor underlying our decision to do a 3rd fresh IVF cycle: keeping six embryos on ice gives us a sense of continued hope. These embryos dull the full keening urgency we feel about starting a family. Their existence gives us a sense (falsely perhaps) that as long as we have them, we still have the potential to be biological parents.

This article also made it clear that it will be much more complicated than we ever imagined should we someday encounter circumstances that compel us to not use these embryos and instead have to decide their fate. What would we do then?

It's a decision I hope we never have to make.

Mo

Infertility math

Yesterday I read the cover story in the New York Times Magazine by Alex Kuczynski about her use of a gestational surrogate to become a mother after 11 IVFs and four miscarriages.

One of the things that hit home was her brief description of "the terrible, wishful math of infertility." I'd never thought of it that way exactly, but I immediately recognized myself. And I recognized my penchant for Infertility Math.

I have repeatedly calculated how old I will be when I give birth if I get pregnant on X attempt, which is a continuously moving target. I also calculate where I will be in my academic training and career…along the lines of "If I get pregnant now, I will be on my internship… applying to post-doctoral fellowships… interviewing for post-doctoral fellowships…on a post-doctoral fellowship (probably true if I get pregnant this cycle)…on the academic job market," etc.

One of my most grueling versions of Infertility Math is computing the age and developmental stage our baby would be at if we hadn't miscarried the first time. I only do this with pregnancy no. 1- by the second and third losses I'd learned to not calculate due dates that might come back to haunt me.

With that first pregnancy, Will's older sister was one month farther along and now has a child (truly, a lovely child) who is a continual reminder of the fact that our baby is not here. Try as I might to NOT do this, when I am at my sister-in-law's, holding her beautiful son, it is almost impossible to not start the dreaded calculations in my head, subtracting one month from her baby's age and imagining what our daughter would be doing and how our lives would be so very different if she had lived.

Then I catch myself, and I stop.

Until the next time.

Similarly, watching friend after friend get pregnant and deliver, and then some of these friends get pregnant - how is it possible? - a second time, has become yet another barometer of loss. A painful reminder that Will and I are somehow out of step with time.

The holidays engender a particularly treacherous form of Infertility Math. Just yesterday, Will and I bought our tree and were securing it in its stand in the living room. Before I could stop myself, I reflexively thought, "This will be our last Christmas without a child."

Which would be fine, except that I think this every year.

And we don't have a child.

And (breath hitches in throat) I don't know if we ever will.

Infertility carries us along on a continuous cycle of hope and loss…followed by more hope. Hope that I can soon be a mother, hope that Will and I can seal our union with an oh-so-beloved child, hope that we can put this chapter of grief and loss and longing behind us and move forward into the future.

And at the same time that hope carries us into dangerous territory - dangerous and terrible and wishful territory - a landscape of unmappable days, of the uncharted and unknowable future.

That's the rub of infertility. And the peril of Infertility Math.

Mo

IVF science: the illusion of control

Not be a downer but I read this article a couple of days ago in the New York Times linking IVF to an increased incidence of birth defects.

Over the past few days, I've been trying to come to terms with what I think of it.

My rational side says the data is based on a relatively small number of women. And as NYU's Dr. Grifo points out, the risk of a problem is relatively small (even if increased). My husband Will echoed these lines of reasoning when we discussed the findings.

But then my other side (my Lupron-filled, emotional, crazier-by-the-day side) latches on to the research as one more thing to worry about (like I need one more thing).

In the dark of night I have even thought that maybe I am selfish to go to such great lengths to conceive a child (who based on this research might be more likely to have a birth defect). I think, if I were a better person, I would just adopt (and truth be told, we'd like to, but we'd also really like to have at least one biologically related child).

In the dark of night I also have other opposite but just-as-loony thoughts, like maybe I can convince our RE to put back one more embryo than he is planning to, and maybe then at least one will survive. Maybe if I stop eating Splenda and aspartame it will all be ok this time. Maybe acupuncture will do the trick. Maybe if I eat organic I'll get pregnant. Maybe munching that ice cream bar (ok, two ice cream bars) last night will mean I won't. Maybe these anxious thoughts will doom the cycle. Maybe maybe maybe. It's a vicious 3AM spiral.

IVF controls much of what is usually a mysterious process. All of this micro manipulation and monitoring make it tempting to start to think that if I just take this action or avoid that action, somehow I can influence the outcome. It also makes it tempting to think that if we don't get pregnant/lose another baby/have a baby with a problem, maybe there is something I could have done that would have prevented it. That maybe it is all my fault.

And then at some point, I catch myself, and say to myself firmly:

You are not in control. You are NOT in control. You've got great science on your side, but you cannot determine every part of the journey or every potential outcome. Relax. Go with the process.

Repeat as needed.

(which will likely be often)

Mo