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When Infertility Professionals Get it Wrong.

September 18, 2012 | By: | Filed under: adoption, Current Affairs, Deadly Silence, Egg Donation, Faith and Infertility, I'm Just Another Angry Infertile Woman, In the News, infertility in the media, IVF, Personal Musings, The Journey to Parenthood, Thinking Out Loud, Thoughts on Choosing an Egg Donor, Thoughts on Donor Egg Recruitment

You know it’s not that often that I see glaringly offensive comments or information from professionals in the infertility world.  Most of us know to be very careful with the language we use so that we don’t inadvertently hurt someone’s feelings.  Today I was surfing Facebook and someone to whom I was connected (I am no longer “friends” with her) posted a comment about egg donation, adoption, and infertility.  I thought at first she was referring to a blog and was hoping she was quoting someone else.  Alas, I was very wrong and the link she posted was to an egg donation agency based outside of the United States (thank goodness for that — didn’t want to be running into her at any upcoming conferences lest I let her have it to her face) and the post was pretty much designed to bring attention to her agency.  I am not a big believer in the old adage that any attention is good attention or that negative publicity is still publicity.  In this industry, offending people is the kiss of death and well let’s just say I’ve been kissed.

I really don’t like the word “barren”.  It’s an ancient reference to women who were unable to conceive and it dates back to a time period when women had no rights and would sometimes be replaced by another woman if she was unable to conceive a child.  The Sixteenth Century this is not and I would have hoped that in the Twenty-First Century we would be a little bit more aware of appropriate terminology.  I guess not because this FB poster (who shall remain nameless even upon kiss of death) seemed to think that all women who are having difficulty conceiving should be considered BARREN.

I don’t think so.  Having difficulty conceiving does not mean we are barren.  The word barren actually has many definitions (http://www.merriam-webster.com/dictionary/barren ) including “lacking inspiration” or “lacking charm”.  For the record, I don’t consider any of my infertile clients, and certainly not my own bod, to be lacking in charm.  Some of my clients are downright amazingly gorgeous women with incredible resumes and great personalities.  In this case they are hardly barren are they?  They also usually go on to become mothers which would seem to indicate that they are in fact capable of producing offspring (please note Miriam-Webster dictionary says nothing about those offspring needing to be biological children — at least its editors “get it”).  But the word was used nonetheless in this FB post.  The fact that the post tried to be “neutral” and present all sides of debates as they pertain to third-party assisted reproduction was totally lost on me by virtue of the selection of this word to describe me.  Because that is who she is describing, me.  The last time I checked I am still considered to be infertile.

The other problem was that this poster and her choice of words — and barren was by far the least offensive of them — revealed her own underlying belief that women who have difficulty conceiving, women like me who are infertile, are somehow lacking, less than other women, and are desperate.  While she notes that “an element of respect” should be offered to these women, in and of itself that remark too is offensive.  I am only entitled to “an element of respect”.  7 IVF Cycles, 9+ miscarriages (I stopped counting but there were more), three adoptions, and I am only entitled to “an element of respect”.  Seriously?

Additional comments were made about whether decisions to use an egg donor were interfering with the “divine plan” for that woman’s life; and that what transpired to finally bring this barren woman to the point of actually considering using another’s genetic material could only be understood by the woman herself.  Here I do agree with the post.  However, I would prefer that she had not characterized the decision to choose egg donation as an act of finality, desperation, or somehow jumping off of the cliff of normalcy.  Families are built in countless ways and all of them are normal.  

Egg donors also were attacked for their decision to share themselves with other people.  Let’s be clear that egg donation does not involve any kind of “sharing”.  Egg donation agreements are clear that when a woman donates her eggs she relinquishes all rights to the resulting embryos and/or children.  Egg donors do not share in the day-to-day life of the intended parents’ pregnancy, or their life as they raise their child.  And let’s place the emphasis where it belongs, on “their” child, not the egg donor’s child.  If this woman is counseling egg donors — and I fear she may be — then she is sending the wrong message to these selfless and generous women who donate their genetic material, their ova, to an infertile couple.  They ain’t sharing those eggs or themselves with anyone.

Let’s not even discuss the offensive descriptions attributed to adoption.  I will have a stroke.

I understand that this woman was trying to raise a debate, trying to draw attention to her business and what she does.  But the choice of words she used as a professional in this industry was astonishingly rude and clearly revealed her own underlying biases.  She is entitled to those biases.  But as a professional she had a responsibility to keep them private and not mislead egg donors or intended parents.  I also think it was a poor decision to use such inflammatory language if she was trying to promote her business.  In all likelihood she sent potential clients running in the opposite direction.

I hope that the other people who read this post are wearing running shoes; they need to run as fast as possible.  Most likely the very charming, inspirational women who read this post pulled their flats or sneaks out of their gym bag and took off their Jimmy Choo’s, and headed in the direction of a more sensitive egg donation/surrogacy agency, a therapist (I may need a session), shopping (in which case maybe they should leave on the Jimmy Choo’s), or a glass of wine and some Oreos.  

For all those who read that post and felt in any way diminished as a human being because of their infertility, let’s get one thing straight:  anyone who can get through this stuff is one tough, rockin’ mama.  Emphasis on the word “mama” because that is what you will one day be called.

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Making an Egg Donation Cycle Work. A brief look at what you might need to know to increase your chances of success!

January 19, 2012 | By: | Filed under: adoption, Age and Infertility, Announcements, Egg Donation, In-House Egg Donation Programs, IVF, Personal Musings, The Journey to Parenthood, Third-Party Assisted Reproduction, Thoughts on Choosing an Egg Donor, Thoughts on Donor Egg Recruitment

Through egg donation, many infertile women are now able to experience pregnancy: sharing their thoughts, feelings, blood supply and the sound of their voice with their baby, and delivering their child into the world. The success rates offered by many egg donation programs are somewhat staggering, making this a very popular option in family building, especially for women dealing with the NOvary™.

Egg donation is often so successful that some can potentially build an entire family from one egg donation cycle. Of course not every egg donation results in a pregnancy, but more often than not a carefully selected egg donor not only leads to the birth of a child, but will provide a family with extra embryos to freeze for future family building.

Such was the case for my former client Nancy. Her experience with egg donation provides a great example of the types of things someone considering using egg donation might want to take into account as they move forward on their journey to “Mama” (or “Dada”).  Nancy, at the time her journey into egg donation began, was in her early forties.  Like many women today, Nancy had waited to marry until she found the “right guy” and had established her career.  After graduating from law school, Nancy decided that she wanted to put off starting a family until she had paid off her student loans, and had made partner in her law firm.  She felt very strongly that it was important her career and financial life be stable before she became a mother.  When she was 35 she met Daniel, and after dating for a few years they married when she was 38.  Well aware of fertility landmines related to age, she and Daniel  had discussed her desire to become a mother before they got married and agreed to start trying for a baby immediately after the wedding (Nancy, just like me, hoped for a honeymoon baby!).  She was such a planner that before they got married Nancy went to her OB to see if she was facing any age-related infertility issues.  Much to her surprise and relief, after her OB examined her, Nancy found out that it seemed like all systems were good-to-go; she appeared to have a healthy body, good ovarian reserve, and nothing standing in the way of her becoming a mother.  Nancy’s OB recommended that the newlyweds try having unprotected sex for six months and if nothing happened to go see a reproductive endocrinologist (sounds like a good plan to me!).  However, after six months of unprotected intercourse, Nancy and Daniel had not gotten pregnant. Proactive Nancy immediately contacted the reproductive endocrinologist her OB recommended.

The RE Nancy and Daniel saw recommended that they try assisted-reproductive technologies.  Unfortunately after several failed IUI and IVF cycles, Nancy’s doctors told her that her best chances for becoming a mother were through egg donation or adoption.  Although there seemed to be no medical explanation for Nancy’s failure to conceive, their RE didn’t think further attempts using Nancy’s eggs made sense.  Despite her remarkably low FSH and good AMH results, her RE nevertheless attributed Nancy’s IVF failures to issues related to ovarian reserve and her age.  Ironically, after all her efforts to detect infertility, especially age-related infertility, Nancy discovered that she was dealing with the dreaded NOvary™.  (Just as side note, my definition of NOvary™ extends beyond ovaries that refuse to produce eggs because we are too old.  However, in this case Nancy’s confrontation with the NOvary™ did seem to be related to the fact that she was in her early forties and her ovaries were headed into retirement.)

The RE suggested they consider using an egg donor or adopting.

Nancy was at first — like all of us — somewhat devastated by this diagnosis.  She had done everything correctly, ate a healthy diet, exercised her entire life (in fact Nancy had almost become a professional dancer before going to college), she didn’t smoke, took yoga classes, and yet her body still seemed to be failing her.  After discussing the situation with Daniel, Nancy realized that she really, really wanted to experience pregnancy (I can relate to that!), and so they chose to first pursue egg donation.  N&D agreed that they would try egg donation one or two times and if they didn’t conceive a baby through egg donation, they would move on to adoption.

Nancy, however, was not prepared for the overwhelming information and advice she received once she had settled on using an egg donor.  People told her different things:  don’t use an agency, use an agency, don’t use an inexperienced donor, use an inexperienced donor.  Everything Nancy heard seemed to be conflicting and confusing.  Even worse was how overwhelmed she felt when she logged onto various egg donation agency’s databases.  How on earth could she ever select a donor out of the hundreds that seemed to be available?

Her gut reaction was to work with her RE’s “in-house” egg donor program as they would select the donor for her, thus ensuring that she had a fertile donor and, more importantly, Nancy wouldn’t feel she had to cull through profile after profile.  Nancy just wanted someone to make the decision for her so that she and Daniel could move past infertility and onto pregnancy!

After doing her research (if we haven’t already established it, I want to remind you that Nancy is quite the type A person and she is proud of it!  I can relate, as I too am rather Type A) Nancy, however, decided instead to work with an egg donation agency.  Although many “in-house” programs are flexible, Nancy felt that she had more options when working with an egg donation agency.  While Nancy felt that she was giving herself more legwork to locate her own donor and dealing with the accompanying stress, Nancy felt that by working with an agency she had greater flexibility in choosing her donor.  What had first seemed so attractive — having someone present her with an “egg donation goddess” (her words not mine) — in reality turned out to concern Nancy.  By relinquishing control to her RE and his staff, she lost the flexibility to request a donor who had an athletic background (not only a former dancer, both Nancy and Daniel are self-professed exercise junkies, and Daniel had played some serious basketball in college), or to use an egg donor who has an “artistic” personality (the dancing thing turned out to be really important).  She also seemed to have a harder time finding a college educated egg donor through her RE and in the end having a “smart” donor also turned out to be very important to both Nancy and Daniel.  Their RE’s in-house program would be able to provide them with a donor who already had been screened for fertility (a huge plus by many standards) and who physically resembled Nancy and Daniel (another huge plus for most people), but with the in-house program she couldn’t request an “athletic, artsy, super-smart” donor.  Using an egg donation agency gave her the freedom to be more selective than she initially thought she would need or want to be.

Nancy also didn’t have to share eggs with another infertile family which was a requirement at her particular RE’s in-house egg donation program (off topic for a moment:  shared egg donation cycles are a common effort by clinics to help reduce the cost of an egg donation cycle but being “required” to share a cycle isn’t common).  Nancy also realized that working more independently meant she would have greater control over their finances.

With a limited budget because they were also considering the possibility of adoption, most of the agencies she spoke with recommended that N&D select a donor who lived near the clinic she would be using, thus avoiding substantial travel expenses. Using an agency, Nancy also had a greater selection of donors with compensation rates to fit her budget, compared with the fixed rates offered by Nancy’s and many in-house egg donation programs.  By selecting a “local” donor with a lower compensation than that which her RE’s in-house program requested on behalf of its donors, Nancy was able to save a couple of thousand dollars and put it in what she called their “adoption bank.”  It did take more time finding that “artsy, athletic, super-smart donor” than she had anticipated but Nancy felt the time was worth it given that she didn’t think she would know “enough” about her egg donor’s background had she chosen the egg donor recommended by her RE.

One donor Nancy considered, I am going to call her Lucy, was twenty-seven years old, single, had been a dancer in high school and had attended a Seven Sister’s college (rock on to all women’s colleges!!).  Lucy had graduated at the top of her class and was attending graduate school in journalism (did I mention that Daniel is a news columnist?!). Despite Lucy’s outstanding academic credentials, which often result in a higher requested compensation, Lucy’s “requested comp”  (egg donor industry lingo) was on the low side.   Side Note:  The Society for Assisted Reproductive Technologies’ (SART) has guidelines that recommend egg donors receive between $4,OOO-$7,000 per donation.

With Lucy’s dancer’s background and desire to be a journalist like Daniel, Lucy seemed like the perfect donor.  Lucy, however, had no track record donating eggs.  With their tight budget and limited time factors — N&D were also concerned that if they waited much longer their age might preclude them from working with certain adoption programs and they very much wanted to preserve this as a family-building option — Nancy and Daniel instead decided to match with ”Lauren.”  While Lauren also was twenty-seven and had attended college where she played soccer, Lauren had a three year old daughter and had conducted one prior egg donation cycle that had produced a lot of eggs.  Although they didn’t know whether that egg donation cycle resulted in a live birth, Lauren was clearly fertile and was likely to respond well to medication.  To Nancy and Daniel, this made her a better candidate.

Both Lauren and Lucy were requesting $5,000 as compensation for their cycle and lived relatively close to Nancy’s and Daniel’s clinic (no overnight travel was involved).

Once N&D selected Lauren as their donor, the egg donation agency presented them with a list of attorneys to help prepare their egg donation agreement, and it arranged for Lauren to be represented by an attorney as well.  I am working on a blog on egg donation agreements and why you MUST have one so I am not going to go into it in depth here.  I actually had already met with N&D before they got the list of attorneys from the egg donation agency (and my name was NOT on it grrrr), but I did help them prepare their anonymous egg donation agreement with the woman we are calling Lauren.

Once the egg donation agreement was signed, their egg donation cycle got underway. Lauren didn’t produce as many eggs as N&D had hoped; Lauren “only” produced eleven eggs but all eleven fertilized (Side Note: 100% fert rates are not something you should expect, it doesn’t always happen that all of a donor’s eggs will fertilize.  Nancy and Daniel got lucky). Nancy conceived twins from the first embryo transfer (now that is something you should expect and should discuss with your RE if you don’t feel prepared to parent two at once).  After watching the remaining pre-embryos which were not transferred to Nancy’s uterus, the clinic froze five blastocysts.  Off topic again: Nancy’s RE performed a day-3 pre-embryo transfer which, for reasons that exceed the scope of this blog, I am at a loss to explain.  Despite Nancy’s disappointment with the number of eggs retrieved, I would have thought the clinic would have done a day-5 or blastocyst transfer??

Nancy and Daniel are very happy and currently are considering whether or not to use their frozen pre-embryos.

If you have any thoughts or comments to add about your experience, please feel free to share them.  This blog is designed to help people achieve success in egg donation and if there’s something you think might help someone, go for it!

p.s. I don’t know whether any of this sounded familiar to you, but I did think that Nancy’s and Daniel’s decision-making process and the issues they faced, particularly those Nancy faced, were typical and helpful enough that I wanted to share them.  Nancy and Daniel’s story is discussed in much greater detail in my next book if you want to learn more about what they went through when finding their donor and negotiating their egg donation agreement.  More details about pub date to follow (I am under an editorial deadline which is a good thing because it means this thing will finally be finished!!!  I’ve only been working on the book for three years.  Enuf is enuf!).

 

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Donor Eggs

June 10, 2008 | By: | Filed under: Thoughts on Donor Egg Recruitment

So question of the day: how many eggs do you need your donor to make? Sounds like one of those jokes, “how many [fill in the blank] does it take to screw in a lightbulb?” Right? Well it’s not a joke. It happens to be one of the most frequent conversations I have with my clients, both before and during their cycle. Recipient/intended parents are justifiably obsessed with the issue and question of how many eggs their donor ideally should recruit. The general sentiment I hear from my clients is you can never be too skinny and you can never have too few eggs or embryos. I can understand. I remember back in the days of my own IVF cycles, I was always disappointed when I “only” produced 7 or 8 eggs. Even if we had 100% fertilization results I was still disappointed . . . and let’s be honest it’s way more intense when you’re using an egg donor and investing so much time, energy and money in your egg donation cycle. You want a ton of eggs. But the reality, as I was just reminded, is that you really don’t. All it takes is one!

I mentioned in another blog about the conference I just attended in Charleston SC, on egg donation. I heard a lot about donor egg recruitment and how many eggs are ideal, not ideal, and even how to rescue a failed cycle. I really wish all my intended parent clients could have been sitting there with me because it was so reassuring (although the information was spread throughout several different lectures and you basically would have had to sit through about 6 hours of medical lectures and Q&A). It was enlightening too.

I think that intended parents and me as their advocate well, we tend to get caught up in wanting to see the donor produce a bazillion eggs. My clients are sometimes disappointed when their donor’s “only” produce 12-15 eggs. Boy, I would have been so stoked to produce that many in one of my IVF cycles, how bizarre that it is a disappointing result when it’s a donor! Everyone seems to want an egg recruitment in the 20-30 range even though that puts the donor at very high risk for hyperstimulation and usually leads to excess number of stored, frozen embryos which create issues and problems for intended parents and clinics later on down the road after the intended parents have had their babies. (There are hundreds of thousands of frozen embryos in storage now and no one quite knows what to do with them—but let’s leave that for another blog and another day shall we?) While I certainly recognize and sympathize with my client’s desire to have tremendous numbers of eggs recruited from their donor (and I cheer along with them when it happens), what was of much greater impact for me was what I learned about just how many eggs it takes to get a recipient/intended mom pregnant and how I can comfort or reassure my clients when a cycle doesn’t yield 50 gazillion eggs.

First of all, according to the doctors at the conference, the ideal number of eggs to be recruited from an egg donor is no different from that for any woman going through IVF. Docs like to see a donor produce around 10-12 eggs. It’s the same argument I discussed in The Infertility Survival Handbook: we’re going for quality not quantity. Although far lower recruitment numbers than what my clients are hoping for, 10-12 eggs gives them a great shot at the important aspects of ART, things like blastocyst transfer, single embryo transfer and having frozen embryos. Although higher egg recruitment does usually mean more eggs to freeze, the statistics and information presented at the conference clearly indicate that higher numbers do not yield higher pregnancy rates and in fact only increase the risk that the donor will experience OHSS (not a good outcome for anyone, most especially the donor!).

And, in fact, surprising to me were the statistics that donors who produce far less than the “ideal 10-12 eggs” show the same pregnancy rates (which are very high across the board these days) as for a donor with a much higher number of eggs recruited. I have seen that several times, so just from an anecdotal standpoint and watching from the sidelines, I know that my clients who’s donors have had “dismal” or “horrific” (my clients’ words, not mine) results, only a few eggs and embryos produced, have gone on to get pregnant and sometimes even with twins!

But even more impressive was the lecture I attended on rescuing a failed donor cycle. The doctor who presented this lecture blew me away and taught me a very important lesson (or maybe I already knew it and just needed to be reminded?): NEVER GIVE UP. The point of this lecture was about donor cycles that go wrong, either because of a mix-up and the donor not doing her injections correctly, or because the donor just wasn’t responding to the medication. The doctor used one cycle as an example in which the donor had virtually no follicles after 10 or more days on stim meds. For whatever reason (and I truly cannot remember why), the cycle seemed to be completely failing. But instead of giving up, this very inventive doctor (well he seemed inventive to me, but I have to say several other doctors in the conference were chiming in with their suggestions on how they have saved similar cycles so maybe I am just underestimating the ability of a reproductive endocrinologist to make lemonade out of lemons) was able to use meds to get this donor to produce two eggs take her to retrieval despite the apparent failure of the cycle earlier on, and get recipient mom pregnant with twins (well she should take credit for that part, yes? I mean he only put the embryos in her uterus so let’s give some credit where credit is due to the recipient/intended mom and her awesome uterus). I was amazed that zero follicles at day 10 or so of stims still wound up producing a twin pregnancy . . . I mean okay this was an egg donor and not your average infertile 30-something patient, but still, I think that is pretty cool! And I am never going to tell a client to give up . . . in fact, just the opposite. My new mantra is: Never Give Up on A Donor Cycle!



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