Saturday, October 4, 2014

the truth about 'the list.'

You know how sometimes you think things are a certain way and then they end up being something entirely different?

I really hate when that happens.

Hitting bumps on the donor embryo road and we haven't even been on it all that long. Well, actually, it's just one enormous bump in the form of the third-party reproduction coordinator, a.k.a. TPRC, who will henceforth be known as the UnproRepro (as in: unprofessional reproduction coordinator). Because she totally is. Horribly, horribly so.

Remember when I said that I was told I was getting around seven profiles of potential embryo donors? Well, I didn't. In fact, I didn't get ANY within the 48 hours I was originally supposed to, because the UnproRepro was trying to find profiles with certain features my husband and I don't even have (because she doesn't listen. Or take good notes. Or whatever). I ended up sending her a picture yesterday morning, to make sure she had a visual reference for what we actually looked like/were looking for.

Almost immediately after that, she sent us two profiles. Mr. Hope, who hadn't gone to work yet, and I were ecstatic. We opened up the first one to discover that the mom of said embryos was 39-years-old (as in: older than me) and that there was history of debilitating diseases on both sides (mom's and dad's, including dad's brother). So that was a nonstarter.

The second profile looked really promising. Mom was significantly younger (30 vs. 39, though still slightly older than I had expected, Dad shared some of our interests, both had great education). But then we got to a line about the dad having a couple of physical characteristics reminiscent of Mr. Hope's Babymama, and my heart sank a little. My brain played it out: Babymama already had a kid that looked exactly like Mr. Hope, and we'd end up with a kid that looked like it belonged to her, and I still wouldn't look like any part of this family.

Keep in mind that I'm reading/reacting to these with zero solid food in my stomach for nearly 24 hours (prepping for the colonoscopy) and a wicked sinus headache. And also, that I'd been expecting seven profiles, not two, as well as mothers in their 20s (based on Dr. Smiles telling me that I should have no problems provided I used much younger genetic material). Also that I did not, as you will soon discover, have a clear concept of how this program worked, seeing as I got one version from Dr. Smiles and something different from the UnproRepro. In hindsight, I probably should've pushed for more info when I met with her on Tuesday, instead of letting her sweep me out of the exam room where I was getting my breakneck-speed overview. But per usual, hindsight is mos def 20/20.

So I emailed her a couple of questions, such as:

Q. Can you please tell me what 2PN means?
A. 2PN means that the embryos were frozen the day after they were retrieved, once fertilization occurred.

Q. Also we were hoping for blastocysts - are they all blastocysts? [asked before I got the answer about what 2PN meant]
A. No, blastocysts are very rare because most embryos die off before they become blastocysts. If we had any blasts, we'd likely only have one. [Italics added here by me.]

Q. Is there a reason why there are so few matches? We were really hoping to find some embryos from younger women considering my advanced maternal age.
A. One thing that you will need to understand is that donor embryos come from a couple trying to have their own child, not an egg donor. The average age is 30-39.

Q. Do we know what births resulted from the same embryo batch?
A. We only accept embryos from cycles that have produced a child.

[Uh, that's great, but this is the first time I've heard this information.]

Please note that nearly all of the above was taken directly from our email exchanges, though I did copyedit her responses because I am like that.

At some point during this exchange I told the UnproRepro that I was confused about how things worked and was available by phone if she'd prefer to talk, so she called me.

The conversation was emotionally charged from the start, so I may be messing up the order of how this all went down. But these are the highlights:

I mentioned our concern over the 39-year-old mother and how that's older than I am. "Not everyone has your problems," she snapped. I told her I understood, but that statistics showed the older the egg, the more likely the genetic abnormalities. She told me the other set of embryos not only had a birth initially but already provided another couple seeking donor embryo with one. Good information to have, lady. Feel free to share these things at any time.

I asked her again about the Day 2 embryo thing, because this is what I had with both of my failed transfers.

"No, you didn't," she told me.

"Yes, I did," I assured her.

And then we literally exchanged several more no, you didn'ts and yes, I dids, before she says, "No doctor in the country does Day 2 transfers!"

"That's funny," I said. "Because mind did. Twice."

"But they're not even ready to be transferred then!"

This went on for a few more minutes before she shouted at someone to get my file.

I moved on.

I asked about seeing more profiles, and she said, "That's all we've got. Most people only get to see one profile. You got two - you should feel lucky!"

Except, I swear to god she told me she'd be sending around seven. I remember this because I thought, "Okay, good, that gives us lots to think about." Since then I've been trying to figure out if I could've misheard her, but even if she said, "I'll be sending you some," some is one syllable vs. seven's two.

Then she told me that the selection was extremely limited - that she'd sent me the only two donors with brown hair. I questioned this, because isn't brown hair fairly common? She told me she had some African-American embryos, some East Indian embryos, and about seven blond-haired, blue-eyed embryos, but no more brunettes. Period.

I think the UnproRepro uttered the phrase, "You're gonna have to understand" about half a dozen times during our short phone call. She also pushed the donor egg thing hard, when I've told her repeatedly that we aren't interested in that.

At one point, I told her I felt like she was being kind of hostile toward me. She said, "No, I'm not, and I'm sorry you feel that way..." and then proceeded to come at me with, "I really think you'd be much happier with donor eggs." Again.

There's some other stuff that was said, but this was the gist of it.

After the phone call, I sent this email:

I'm sorry that I apparently misunderstood how your program worked. When I met with Dr. Smiles, he said, "These are our patients. We know them well," and that you try to match couples with embryos that look like they could conceivably come from the recipients. He said, "We have a huge operation here," and made it sound like there were an abundance of embryos waiting to be implanted. He also stressed to me the importance of using young eggs (in relation to donor embryo, not donor egg) to ensure success. 

This is a huge decision for a couple to make. When I spoke with you on Tuesday I thought I'd be getting more information than I actually did. I can't be the first person to have a ton of questions about how your donor embryo program works, can I?

Also, I have told Dr. Smiles from the start that I do not want to pursue the donor egg route. I would really appreciate it if you would not present that to me as my only option. Or, if it is, please let me know and I can look outside Posh Clinic.

Lastly, I have to say that I feel very disconcerted that you would tell me that no doctor in the country would transfer Day 2 embryos - that they're not even ready at Day 2 - when *both* of my transfers were done on Day 2. I will follow up with Dr. Smiles on that.

Thank you.

Her response was almost total CYA and did not make me feel the least bit better:

As far as donor embryo programs go, we do have a “huge operation.” That does not mean, however that the amount of embryos available are not limited.  We do, however, do our best to meet the criteria a patient has in mind.

We do know our patients well, and that is why we feel very comfortable accepting the embryos.  And as I’ve said, we only accept embryos from cohorts that have produced pregnancy. You are certainly not the first patient to have questions about how a donor embryo program works. I was under the impression that I answered all your questions satisfactorily when we met on Tuesday. I made the time to see you, and would have been happy to continue the conversation had I known that you were not comfortable with the information presented to you.

We are by no means saying that donor egg/donor sperm is your only option. It was simply a suggestion since it would be easier to meet your criteria that way since what we have to offer you at this time is not satisfactory.

Lastly, I never said that no doctor in the country would transfer on day 2. What I said that there are only 2 days that doctors plan a transfer and that is day 3 or day 5. On some occasions, a day 6 transfer is indicated. That is a nationwide protocol.

I do apologize that in your case, I was incorrect and you were transferred on day 2. There was an exception made in your case as the feeling was that the embryo would not survive until the normal transfer day. I am sorry that I was unaware that such an exception was made in your case. [Again, emphasis here is mine.]

We will, of course, continue to to do our best to match you. The next set that comes along that meets your criteria will be e-mailed to you. 

To which I immediately responded:

I didn't turn down both sets. Just the second one with the 39-year-old mother. You said I had until Monday to let you know about the other set. 

No response.

This last exchange took place while I was in the waiting room before getting my colonoscopy (which was clean, by the way - yay!). And even though I'd put a call into Dr. Smiles before leaving to get said colonoscopy, I wasn't home by the time he returned it. So, no talking to him before Monday.

What I did do is put some queries out to my secret Facebook support group. I found out that other clinic-based programs follow the one-profile-at-a-time rule. One woman said that with hers, if you passed on a profile, you got dropped to the bottom of the list.

Other women working with other clinics, like NEDC or FIRM, have had different experiences (one woman got to review 40 profiles before making her selection!). I haven't looked too closely at either NEDC or FIRM, honestly, because until yesterday I felt good about working with Posh Clinic. I do know that NEDC requires a home study, which we were trying to avoid (due to cost, time it takes to complete one, etc.).

And as I told the UnproRepro, Mr. Hope and I hadn't ruled out the other profile. The one that looked really great except for the "might possibly turn out looking like Babymama" thing. (I even wrote to her, "We're not ruling out that one but I really do not want to have a child that looks like his ex. I'm sure you can understand why." This, I was trying to explain, is why I'd asked about reviewing other profiles. So that I could make the most informed decision possible.)

Look, it usually takes me a long time to make big decisions. A long time. Typically, I like to research all of the options. I discuss these options with multiple people. I ponder things. I write about the things I ponder in order to process them. Hell, it took me over a year and a half to purchase our TV. And no, I am NOT comparing a child to a television set. But, like, do you know how many models I had to look at  and how many reviews I had to read before I finally pulled out the wallet? How can I possibly make a decision on our future baby after looking at just two profiles?

I guess the larger question is: How do you know which one is the right one?

The answer is this: You can't, actually. You have to go on gut. Or faith. Or both.

And when I realized that - that my anxiety was being fueled by the unknown factors and not having enough information (or not having the right kinds of information) - I started to get really pissed off at the UnproRepro. This is your job, lady. To work with distraught couples who come to you because they don't have any other choice. They don't have what they need to make a baby, so they come to you. They come to you to get an egg or sperm or both in the form of an embryo. You, lady, are the end of the line - the last chance they have to produce a pregnancy. Have some fucking compassion, will you? Get some fucking bedside manner here.

One of the women on the Facebook group told me she'd worked with Posh Clinic on her fresh donor egg cycle and had a horrific experience with the UnproRepro (who, by the way, I hadn't even named in my posting). She told me they almost backed out before the cycle because the UnproRepro was so unprofessional and because she had been treated so poorly. The whole experience, she said, was so terrible she'd never go back there again.

So I know I'm not alone here, and that's validating. I am going to write Dr. Smiles a letter about the whole situation, because I feel like he needs to know how the UnproRepro is representing his practice.

Now Mr. Hope and I have to decide whether we want to take the other set of embryos or not. The fact that they've produced babies for two couples makes me lean toward yes, as really, that's what I want here: a baby. To be a mom. Sooner, rather than later.

But I do still have concerns over the Day 2 vs. blastocyst thing. Will Posh Clinic grow the embryos out after the thaw? And, if so, do they wait until they reach blast to transfer or do they do it on Day 3?

These are things I feel like I should've known already but I don't. I didn't prepare enough for my meeting with the UnproRepro because I thought she was going to give me a comprehensive overview. That's on me. My bad.

Clock's a ticking, Mr. Hope's still sleeping, and I'm so deep inside my brain right now I don't know if I'll ever find a way out.


  1. Sorry you had this experience. I knew a synopsis from what you had said, but it really is pathetic how this was handled. I know you're not too keen on having a homestudy, but the way I look at it, in the grand scheme of things what is $1,500(ish) and two months if I am going to be happy and well taken care of by a clinic I trust. Good luck as you make these terribly hard decisions!

    1. I'm so sorry that I missed your comment earlier! I totally get what you're saying, and I am open to exploring other options. I just really love my RE, and I'd like to stay with him through our last attempt with my egg(s).