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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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The Starbucks Sperm Donor

October 18, 2011 | By:

There have been a ton of interesting articles in magazines recently about third party assisted reproduction.  One particular article caught my attention and both intrigued and kind of grossed me out.

The article was in the October 10th/17th edition of Newsweek, “You got your sperm where?”  The discussion in the article focused on how people are finding sperm donors (SD for short) through the internet (the “virtual” donor).  The article described one donor-recipient match and donation that was initiated through web contact and fulfilled via a donation made in a Starbucks bathroom in NYC.  Major yuck factor to that one.  Seriously, have you been in a Starbucks bathroom recently?  The line outside the bathroom will give you an indication of how actively they are used (hopefully not all for sperm donation purposes), and thus how potentially grimy they are.  I have a pretty high threshold for gross bathrooms and overall I think Starbucks does a good job keeping its bathrooms clean.  However, with the high traffic many of these bathrooms experience, you have to assume that they are crawling with germs.  And if you are trying to have a baby, at least to me, public bathrooms and sperm donation don’t make a great combination.  But to each his or her own, I suppose.

The thing that really got me, aside from the fact that this was taking place in Starbucks, was the lack of thought people were giving to what they are doing.  It’s one thing to go on a blind date with someone you met on an internet dating site.  To conceive a child from an online site — one that is not run by a sperm bank — seems a wee bit more frightening than agreeing to meet your average Tom, Dick or Harry for dinner or drinks.

One of the reasons people seem to be turning to online sources is to avoid the anonymity of sperm banks.  There is a sperm donor registry that is designed to help families created through anonymous donation, match the SD’s with the children conceived from the donations and to help children/adults conceived through sperm donation find their biological father.  The appeal of finding a random guy from whom you will receive donated sperm, and with whom you can establish some kind of non-anonymous but also non-parent-child relationship, is appealing to many people.  I get that.  No problem there.  Except, I don’t know, maybe some legal issues surrounding that lack of parent-child relationship. . . .

Known sperm donation agreements are some of the trickiest agreements a reproductive lawyer can draft.  I am always extremely careful when I draft them.  Why you ask?  Because, even though the goal of the agreement may be to avoid having the SD be liable for child support or retain any parental rights to the child conceived through the donation . . .  courts overturn them with surprising frequency.  All it takes are a couple of birthday cards signed “love Dad” and a court may well determine that, notwithstanding my carefully drafted known sperm donation agreement, the SD does indeed have parental rights, is liable for child support, and the child may even be able to inherit through “donor dad’s” estate.  Did any of us intend for that to happen when we sat down at the table to discuss what they wanted the agreement to accomplish?  No.  My clients usually want to have a friend donate sperm so that they can have a child (alone or with a partner), and have the comfort of knowing who the person is that is donating his genetic material.  All those “what-if” and “what is he like” questions can be answered later by the existence of a specific known SD.

If the SD and the recipient mom don’t want to have a parental relationship — for example two women in a relationship who intend to parent a child together but don’t want to use an anonymous sperm donor, and would like a close friend of theirs to donate his sperm (think along the lines of a well-known singer and her partner and another very well known male singer) — the sperm donation agreement becomes a critical component for recognition of the intended family unit.  The sperm donation agreement establishes what everyone intends to happen, and what everyone intends to be their respective rights and responsibilities in the future.  These intentions are set forth in writing prior to the conception of a child.  Most of the case law in the US that involves third-party assisted reproduction (including known sperm donation) looks to the parties’ intent at the time the child is conceived.  Provided that everyone sticks to the terms of the agreement, usually a good sperm donation agreement will be upheld if ever there are arguments, disagreements, or when and if someone suddenly wants something that was NOT intended when the agreement was drafted.  The thing is that just a few real-life events can cause that sperm donation agreement, and the parties’ intention, to come into question.  A court could decide that while the parties may have written down and signed an agreement that said one thing, their actions reveal a contrary intent.  Actions frequently speak louder than words when it comes to known sperm donation arrangements.

So let’s get back to the people who donated and received the sperm at Starbucks.  Do you think they took the time to consult a reproductive lawyer?  Did they consider what the consequences would be 10 years down the road if suddenly one person decided they wanted a different type of relationship or needed child support?  It didn’t sound like it from the article in Newsweek.  While their intent may have considered the prospective best interests of the child — having a person that the child could one day meet or speak to and thus avoid identity issues that plague many children conceived via anonymous sperm donation (thus giving rise to the donor registry I mentioned) — the reality of what they were doing and the lack of awareness of the long term ramifications are mind boggling.

According to the article, one man who is donating sperm through online forums, is asking the recipient to scream “make me pregnant!” or something like it during intercourse.  Let’s agree to not discuss the fact that they weren’t using medical professionals or a home insemination kit.  The statement the recipient is being asked to state in and of itself could be interpreted as an expression of their mutual agreement and intent to parent a child, TOGETHER.  Did the recipient of this sperm intend for this man to be the FATHER of her child?  I don’t believe she did.  Or did she?  Did the SD?

And hey, are we doing background medical checks of any kind?  Does anyone know if the people donating or receiving the sperm are healthy or otherwise able to parent a child?  What if the SD has an infectious disease?  What if the recipient is an ax-murderer?  Odds are they aren’t anything other than people with good and honorable intentions.  But if the law comes down to intent, don’t we owe it to the child to express that intent?

The internet is a wonderful place and it is a frightening place.  We all have heard horror stories stemming from internet match-making.  Let’s not add conception of a human being to those horror stories.  For anyone considering this type of sperm donation, and apparently there are plenty of people doing it, or even those seeking to enter into a known sperm donation with the assistance of medical professionals, do me a favor:  Find a reproductive lawyer or a family lawyer and talk about how you want to protect your family!

Maybe I am over-thinking this. Maybe it’s not different than someone who goes to a bar knowing she is ovulating, with the intent to hook-up with some guy and hope she gets pregnant.  At least the people going to Starbucks theoretically know each other’s real names and have some information about each other, and both know that a child is being conceived. Good intentions and lack of (legal) judgment aren’t a crime.  Then again, apparently Law & Order made an episode about this subject (maybe not involving a Starbucks sperm donor) and I would love to watch it.  I wonder what issues the writers of Law & Order found to address?

And really, I am just totally dumbfounded by this, someone donated his sperm in a Starbucks bathroom?  Wow.  What’s next? A mile-high  club for sperm donors?

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