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The painful silence of recurrent pregnancy loss and stillbirth. A first hand perspective and perhaps finally, a voice.

February 15, 2013 | By:

The shrowd of silence around stillbirth and pregnancy loss finally is being lifted.  Someone is making a documentary about miscarriage, recurrent pregnancy loss, and stillbirth.  This morning I watched the trailer of “Still”  a documentary devoted to raising awareness of the pain of the loss of a pregnancy, a child born too soon, or a stillbirth.  I think “Still” may focus more on stillbirth or pre-term delivery, but some of the articles I read as I researched its production indicated that the documentary intends to address recurrent pregnancy loss and/or miscarriage more than is touched upon in this trailer.

As I watched the trailer I was reminded of a long call I had with a new client this week.  It is rare that I have a client who has a similar background to my own experience with infertility.  Like me she has experienced 12 unexplained pregnancy losses (although I sort of stopped counting about a year ago when I went through it again . . . something about hitting the number 13 and I really decided it didn’t matter how many I had, I have had enough, one is enough).  Only in addition to experiencing a number of first term (non-chemical) pregnancy losses, my new client also lost pregnancies in the second trimester and near the beginning of the third trimester.  We had a lengthy conversation about how isolating it is, how lonely it is, how there is no person other than your partner or spouse who “gets it” (and even then sometimes perhaps they don’t totally get it because it isn’t their body), and how the silence that surrounds pregnancy loss can engulf one’s life, one’s existence.  Our call also reminded me of a blog I posted about a gravestone I once saw that marked the death of fetus.  As I commented in that blog, it wasn’t a pro-life stunt.  It was a family who had been given permission not only to mark the death of their baby while in utero (or loss of their pregnancy) but to recognize all those other families that have suffered the same pain.  In silence.

Reproductive medicine has provided so many advances to assist infertile couples in achieving their dreamed of family but recurrent pregnancy loss remains largely unexplained.  While theories abound, there are far too many of us who don’t know why this happens to us, repeatedly.  Reproductive medicine and reproductive law now give us the option of having our biological child carried by someone who is likely to deliver that child when we can’t.  Indeed, the option to use a surrogate after experiencing pregnancy loss is perhaps the driving force behind at least half of my clients who come to me to assist them with legal agreements as they begin their journey using a surrogate.   As is the case with the call and the client I just mentioned.

As many of you know, in the absence of an explanation of why my babies die, I was too frightened that a surrogate might lose my child.  I couldn’t ask another woman to risk experiencing the pain I have dealt with so many times.  Adoption was always something my husband and I had wanted to pursue so when we were faced with the [dreaded] conversation where our doctor told us we were out of options other than surrogacy or adoption, it was a no-brainer for us.  It was going to be adoption.  And as one of the women in the trailer for “Still” points out, I wouldn’t turn back the clock or make different decisions; because without those pregnancy losses I wouldn’t be parenting the two beautiful children I have now.  I cannot imagine a life without these particular little souls in it.  It seems like a heartbreaking price to pay but as I told my new client, one day when this is all over and you are holding your baby in your arms, it will make sense and you will know that but for all that came before (all 12 of those horrendously difficult pregnancy losses) this little baby wouldn’t be yours.

But as she journeys toward that day where she hopefully does feel that sense of peace and gratitude for the child in her arms, she is left with a huge void.  She has no one to talk to.  I had no one to talk to.  Even my best IVF friends didn’t understand how I felt.  Excuse me:  how I FEEL.  I still feel pain on a day that one of my longtime friend’s celebrates, the day she heard the heartbeat of each of the babies she was carrying.  I don’t begrudge her that joy.  I celebrate with her.  But for me, inside, it always is a reminder of the miscarriage that I experienced just a few days earlier.  My client and I share a special bond, one of knowing what each carries inside her and the thoughts that creep into our mind throughout the day.  Thoughts that largely go un-shared with anyone.

Will “Still” do justice to this topic, to this diagnosis, to the countless women and men who have endured the loss of a life growing inside them or one that came into the world far too early to survive?  I think so.  I hope so.  Because I would like nothing more than for women like me who are going through what I went through, women like my new client, to have a voice in the reproductive community.  To have doctors pay attention to our kind of infertility.  To have better resources and support groups.  To just plain have a voice to express their pain.  Amazing options for family building notwithstanding, the pain associated with recurrent pregnancy loss, miscarriage, and stillbirth shouldn’t continue to be shrouded in silence.

And so today I thank the people behind this documentary entitled “Still”.  THANK YOU for initiating a dialogue that is long overdue.

And one final note, to all those physicians who have dedicated their careers to exploring the mystery of recurrent pregnancy loss . . . THANK YOU.

 

If you would like to watch the trailer click here 

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The Bizarre World of Embryo Banking. Where My Motherhood and Morality Meet.

December 7, 2012 | By:

Every once in a while I have true conflicts between my self as a former infertility patient and my career as a reproductive lawyer and adoption attorney.  A couple of years ago, I wrote a law review article on the disposition of frozen embryos, and whether or not talking about embryo adoption was legally correct whether the better, more appropriate terminology was/is embryo donation.  There are hundreds of thousands of frozen embryos in cryopreservation in this country where the intended parents of those embryos no longer wish to use the embryos for their own family building.  These embryos are often referred to as “leftovers” a term which somewhat disturbs me but is strictly speaking, accurate.  These embryos are “leftover”, after a family was created through IVF and now remain in a state of frozen suspension.  Many of those embryos could be used to help build another family, and be donated to an infertile couple.  There was some confusion as to whether these embryos should be placed for adoption or donated in a similar manner to egg and sperm donation and I wanted to resolve that confusion — at least for myself.  I ultimately drew the legal conclusion that the term embryo adoption isn’t really accurate because there isn’t a human being to adopt.  I could go into a lengthy analysis of how I came to that conclusion but your eyes would roll back in your head and you would probably start drooling from boredom.  So let’s just defer that analysis and argument for another day.  If you are interested, you can get a copy of the article on the web (click here).  I now happen to be a huge advocate for embryo donation.  I think it is a fabulous way to build a family.  However, these are musings for another blog.  But my article did provide some clarity to those medical facilities which are banking those frozen “leftover” embryos.

So here I have been sitting happy as a woman with a barren uterus could ever be, contemplating my holiday shopping safe and secure in my belief in, and advocacy of embryo donation.  And then I hear about this doctor in California who has a new kind of embryo bank.

Before I heard of this physician in California, I was aware of only one type of embryo bank; one where frozen “leftover” embryos are being made available for donation to infertile families.  These frozen embryos were the subject of my law review article.  This new embryo bank, however, does not contain any of these “leftover” frozen embryos.  This bank is comprised of embryos which were recently created using carefully selected donor eggs and donor sperm.  The donated eggs are fertilized with the donated sperm and the resulting embryos are frozen for future selection by hopeful intended parents.  Let’s stop briefly and note emphasis on the words “future selection”.  We will circle back to why this is relevant but I wanted to point out that these embryos are being created for future selection by wanna-be-moms and dads.

This physician has created his embryo bank in a manner to facilitate selection for all types of characteristics — everything from physical traits like blond hair and blue eyes to religious ethnicity.  Jewish embryos, who knew?  Actually, this could be fantastic for Jewish couples who need a single Jewish egg donor, and/or want to further ensure a connection with Judaism by having a genetic connection on the sperm side of life.  You have no idea how hard it can be to find a specific ethnic donor and this is something I gather this doctor has identified as a plus to his business model.  Speaking of business models, he also offers a money back guarantee.  You choose a batch of embryos to use to try and get pregnant.  If you don’t get pregnant the first time, you get two more tries using different batches of embryos.  If you don’t get pregnant, you get 100% of your money back (approx. $12,000).

Upon hearing of this embryo bank a part of me was disgusted and a part of me . . .  well I was excited.  Super excited. Especially about the money back guarantee.

The infertility patient part of me sees this as a great opportunity to get pregnant.  Frozen embryo transfers — while statistically less successful than fresh embryo transfers — can be lot easier to go through than an IVF cycle.  For me having the embryos created using donor gametes isn’t a big deal.  But if it were, I would be able to select an embryo based on whatever I might deem important.   So, yeah baby!  Let’s have another baby!  Give me this doctor’s number.  I am in!  Or perhaps it would be better to say the embryos are [going to be] in [me]!

But the legal scholar, academic, intellectual, lawyer part of my brain is sitting here vomiting and is pissed that I am putting these thoughts onto cyber-paper and making an argument in favor of this horrific new kind of embryo bank.  Stork Lawyer Reality check:  It is pretty much illegal to create embryos without first having identified intended parents as recipients for those embryos and from what I understand, there are no intended parents waiting for those embryos when this doctor is creating them.  The intended parents don’t enter the picture until the embryos are selected from the database and someone signs up with this program to undergo an embryo transfer procedure.  This is where that whole “future selection” comes in.

The laws regarding assisted reproduction essentially come down to intent to parent before conception: in a third party assisted reproductive arrangement there is supposed to be a contract or other document signed before the embryos are created, whereby intended parent(s) agree to be legally and morally responsible for the embryos and children that may result from the ART process.  In this case there is no such contract or preexisting intended parent.  The embryos subject of my law review article all had intended parents before the egg and sperm came together to create the now frozen “leftover” embryo.  But this new type of embryo banking lacks that component.  There are no intended parents choosing the eggs and the sperm with the immediate intent to parent.

And speaking of all those “leftover” embryos shouldn’t we first be dealing with and using all the existing cryopreserved embryos before we go about creating them? And what about the potential that this doctor may be creating even more “leftover” frozen embryos (what happens to those embryos that don’t get selected)?

Let’s not analyze whether this is baby selling.  I can’t, or won’t go there, although many others have.  Consanguinity, or the risk of an individual created through donor gametes marrying or having a child with a genetic sibling is another issue that has been raised.  The number of families that are created using any individual egg or sperm donor’s genetic material is a concern not to be overlooked or ignored.  These donors presumably are also donating through egg donation agencies, fertility clinics or sperm or egg banks.  We all have been astonished by stories of men who have discovered that they have fathered over a 100 children as a result of their donation to sperm banks — there is a significant risk that through this new type of embryo banking program not only will children have multiple full siblings running around but that egg and sperm donors have created half siblings through other programs.

Even more, if I understand this program correctly (and I am pretty sure I do) batches of embryos are being created which contain embryos which are full siblings to embryos which are contained in other or separate batches of embryos.  It sounds like  it is possible that three separate donations could take place using these three batches of embryos.  Okay, follow-me slowly here for a minute because this is a little bit like playing Twister.  In other words,  three batches of embryos each of which contain embryos which are full genetic siblings to embryos in other batches, could be donated to three different families thereby creating three separate families whose children are all full genetic siblings to each other!

Do the recipients of these embryos know how many full genetic siblings their child may have?  Are the donors aware?

It is supposedly almost impossible from a statistical standpoint for one of these children to marry its full sibling.  But when you add in the half siblings that could be created through other donation programs, and/or smaller ethnic groups for whom donation can be a challenge because of the limited number of donors available matching their ethnicity, doesn’t the risk become somewhat more than insignificant?  And even if it doesn’t, I worry that people don’t have enough information about how many genetic siblings are out there whether they are full or half siblings.

But I get it, I get why he did it.  Especially for someone with an ethnic background this type of program would be hugely popular and let’s not forget the money back guarantee.  We’re all broke after trying IVF multiple times, why the heck not take out a second mortgage if you know you will be able to pay it back if you don’t get pregnant?  Sounds pretty good doesn’t it?

I am at war with myself.  I want to go running to that clinic and pick out an embryo tomorrow.  And then my lawyer (self) tells me to stop and think about whether I want to participate in, and thereby endorse a practice which I believe, in my own legal opinion, is legally impermissible, and legally and medically unethical.  Is my desire to be a gestational mother stronger than my moral center?  Good question.

 

 

The views expressed in this blog are the views and opinions of this author and are not intended to provide or constitute legal advice or a statement of the laws as they may pertain third-party assisted reproduction within the United States.

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When Infertility Professionals Get it Wrong.

September 18, 2012 | By:

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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