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The Risk of Choosing The Mindset of Infertility

October 24, 2014 | By: | Filed under: adoption, Age and Infertility, Deadly Silence, Egg Donation, Faith and Infertility, Gestational Carrier, infertility in the media, Infertility In The Movies etc., Infertility on Television, IVF, Peace to Parenthood, Personal Musings, Recurrent Pregnancy Loss, Surrogacy, The Infertility Survival Handbook, The Journey to Parenthood, Thinking Out Loud, Third-Party Assisted Reproduction, Treatment, Uncategorized, visualization

I’m back (after a blogging break) and I’m mad.  Very mad.  I am mad at doctors, mad at the media, mad at the reproductive community, mad, mad, mad!  Why am I mad you ask?

Good Question.

It took me awhile to figure it out, which makes me even . . . madder!  Okay I know that’s not a real word but you get my point . . . I think it’s been building up inside me for . . . oh about 15 years.  Because 15 years ago (give or take a few years) I was officially LABELLED as INFERTILE.  It is not a nice label.  It is not a label anyone ever wants.  And yet there it is.  A LABEL in my medical chart.

It’s like having a huge tattoo on my forehead that screams to doctors and the world:

INFERTILE:  WILL NEED HIGH-TECH EXPENSIVE MEDICAL TREATMENT TO EVER HAVE A CHANCE TO CONCEIVE AND CARRY A CHILD.

This is a label which makes your doctor look at you differently.  A label which makes YOU look at YOU differently. A label which makes you look at your partner differently, and makes your partner look at you differently.

The LABEL stuck with me for over 15 years.  And indeed, after years of IVF those labels became so convincing to everyone, and I mean everyone, that no one believed there was any hope for me.  It was like getting put into a closed box which doctors didn’t even want to try to open.

I listened to doctors, and nurses, and even friends, as they recounted the statistical UNlikelihood that I would conceive and carry a baby, as the statistics of the likelihood of what I wanted more than anything, became smaller and smaller, and smaller.  I let them convince me it was impossible.

The list of reasons they gave me was huge.  Insurmountably huge. And so I believed them when they told me I wouldn’t conceive.  I believed them when they gave me diagnosis after diagnosis.  I didn’t question their opinions or their conclusions.  I didn’t challenge my own belief in the power of my mind, the power of my body, the power of ME!

I BOUGHT IT ALL HOOK LINE AND SINKER!

And that’s why I am mad.

I let them compartmentalize me.

I let them put me in a box with a label and give up on me.

I let ME give up on ME.

Today there are countless ways to build a family.  IUI, IVF, IVF with donor egg, IVF with donor sperm, IVF with egg and sperm donor, embryo donation, gestational surrogacy (with any of the aforementioned IVF combinations), traditional surrogacy, domestic newborn adoption, foster-care adoption, international adoption; and there are more options than what I have mentioned.  It is a colorful and beautiful world filled with reproductive and family building options.  I live and breathe it every day as I help others move toward their dream of building a family.  But I couldn’t see any of it for myself.  All I could see was that tattoo staring back at me in my bathroom mirror every morning.

INFERTILE  

I read when magazines and newspapers attributed the label to countless celebrities, the media’s whispered words of shame and failure . . . [insert celebrity name here] can’t get pregnant] . . . she’s INFERTILE.  But I didn’t believe it for them.  I believed they would (or will) prove the label was wrong.  Prove the media was wrong.  I believed that others could defy that label which defined me.

INFERTILE 

God I hate that word.  I hate the feelings it brings out in me.  Feelings of failure, sadness, desperation, and now anger.  But I am not angry that I am infertile.  I am angry that I gave up on myself.  But then something happened.  Something that wasn’t supposed to happen . . . not to me, not to someone with all those LABELS.  Something extraordinary happened that caused me to challenge my doctors’ assumptions, that caused me to look at the LABEL tattooed on my forehead and ask:

IS IT REALLY TRUE?

AM I REALLY INFERTILE?

And then I realized it isn’t impossible.  Nothing is impossible.  In fact everything is POSSIBLE.  And with that realization my entire world changed.  My longheld beliefs about myself and my infertility CHANGED.  Everything I feel and believe about what I have lived through for well over 15 years, what I tell my clients, how I look at the community and industry in which I work, has shifted.  I suffered for over 15 years for no reason.  There was always hope.  I just wouldn’t let myself see it.  But I see it now.  I see HOPE everywhere, for everyone, even for ME.  No one really knows who is infertile.  Not even your doctor.  Nothing anyone tells you has to be true.  Not unless you believe it’s true.

My point is this:

Do NOT let your doctor get you down.

Do NOT let your doctor dismiss you.

Do NOT buy into the label(s).

Do NOT believe statistics.

PLEASE DO NOT BELIEVE STATISTICS.

I have finally realized that everything and anything is possible.  Because it is.

ANYTHING AND EVERYTHING IS POSSIBLE!

It will happen to you in the perfect time, and in the perfect way.  But you do not have to suffer while you wait. Do not do what I did.  Do not buy into the labels.  Do not give up or give in.

Instead of choosing the mindset of infertility, choose the mindset of belief.  Choose the mindset of knowing that your time will come.  Accept, believe, and KNOW that everything and anything . . . and I mean ANYTHING . . . is POSSIBLE.

Because it IS.

And I know this because after 15 years of living with the label, and living with the tattoo on my forehead, something happened which proved everyone wrong about everything.  I now know that

I AM NOT INFERTILE

I am

POWERFUL

My body is 

POWERFUL

and so is

YOURS!

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When Judge’s Get it Wrong When Endeavoring to Get it Right. Second-parent adoption blog part 2

February 3, 2014 | By: | Filed under: adoption, Birth Certificates, Check This Out, In the News, infertility in the media, Parentage Orders, Personal Musings, Same Sex Parenting and Reproductive Law, Thinking Out Loud, Third-Party Assisted Reproduction

I promised a more human blog on this new case from Brooklyn.  Here goes:

 

By now most people are aware of the groundbreaking, landmark decision in the case of United States v. Windsor, a case which determined that same-sex marriages must be recognized under federal law, thereby overturning part of the Defense of Marriage Act (DOMA), and leading to the passage of many state laws embracing same sex marriage or otherwise altering state’s views on same-sex marriage.  One important fact about Windsor that many people have overlooked is that Windsor did not apply to section 2 of DOMA, which permits states to ignore or fail to recognize same-sex marriages performed in other states.  Thus while the Federal Government must now recognize the marriage of two men or two women in the State of New York, Windsor did nothing to change the rights of other states to ignore same-sex marriages entered into in New York.  Insofar as a state could ignore or choose not to recognize such a marriage, that state also could choose not to recognize the legitimacy of children born during the course of that marriage.

Because Section 2 of DOMA remains good law, attorneys typically recommend to their clients who are same-sex families that the non-genetic or non-gestational parent should enter into a second-parent adoption in order to ensure that his/her parental rights are recognized in hostile states (states that don’t like same-sex marriages).  The hypothetical I typically provide to my clients upon discussing whether and to what extent they might deem it appropriate to take the additional step of entering into a second-parent adoption to secure their parental rights in other states, is one involving a medical crisis.  And because I used to be a drama major (and perhaps still am in many respects), I have created a lovely little soap-opera-like legal hypothetical to help make my point:  Let’s say that Jane and Jan, who are married under the laws of the State of New York, have a child, Jack, who is genetically related to Jane.  Jane also is Jack’s birth or gestational mother, but Jan has no genetic or gestational connection to Jack.  Jan is Jack’s mother because –like all couples who have a child together — she intended to conceive him with Jane, and was married to Jane when Jack was born.  Because NY law is so favorable to same-sex couples, both Jane and Jan are listed on baby Jack’s birth certificate.  New York basically says that it doesn’t matter what your sexual orientation is, if you are married at the time a child is born, both married partners have equal rights to the child born during the marriage, and both parents names shall be placed on that child’s birth certificate.  This is wonderful law and I am proud to be a New Yorker because of its stance with respect to marriage equality.  However, just because NY lets Jane and Jan put Jan’s, the non-genetic parent’s, name on baby Jack’s birth certificate, doesn’t necessarily protect Jan in a state which doesn’t respect marriage equality.  In my horrific hypothetical soap opera-like drama, I ask Jane and Jan to consider what happens to them if they get into a car accident in a state that is unfriendly to same-sex marriage.

Imagine that Jane is on life support and unable to communicate, and little Jack is critically injured and needs surgery (hey I said I am the queen of drama).  The hospital however, refuses to recognize Jan as Jack’s parent, refuses to recognize Jane’s and Jan’s marriage, and Jan is in a time-sensitive situation in which she needs to make a medical decision to save her son’s life but is being precluded from so doing because the state  in which this accident took place doesn’t recognize any aspect of Jan’s relationship to Jack or Jane.   This sadly isn’t me being melodramatic, this is a reality that Jane and Jan could be facing. But let’s let this little soap opera sit for a moment and get back to my discussion of DOMA, Windsor, and this recent case decided in Surrogate’s Court located in King’s County (Brooklyn), New York, which case on the one hand reinforces the beauty of the laws of the State of New York but simultaneously sets legal precedent protecting same-sex marriages on its head.  Many attorneys are deeply concerned about the ramifications of this case should it not be overturned on appeal or otherwise reversed.

As noted, notwithstanding Windsor, Section 2 of DOMA is still valid law, and permits states to refuse to recognize same-sex parental rights even where a parent’s name is listed on a child’s birth certificate.  Thus, up until this new case from the Brooklyn Surrogate’s Court, in light of Section 2 of DOMA and the variety of state laws as they apply to same-sex marriages, most attorneys (including yours truly) would have advised Jan to enter into a second-parent adoption and obtain a court order or other judgment establishing her to be Jack’s legal parent.  Under the Full Faith and Credit provision of the United State’s Constitution, that “Order of Adoption” must be recognized everywhere and Jan could use that Order to ensure she has the ability to make that medical decision for little Jack in our soap opera.  The second-parent adoption proceeding and the recognition afforded to that Order of Adoption gives Jan and our little soap opera a happy ending (assuming everyone recovers from the horrific hypothetical car accident).

However, this recent decision from the court in Brooklyn, In the Matter of Seb C-M (NYLJ 1202640083455, Surr. Ct. King’s County Jan. 6, 2014), recently held that a woman in Jan’s position is precluded from entering into that second-parent adoption because her name already is on Jack’s birth certificate and she was married to Jack’s birth/biological mother at the time he was born.  Under New York law, says this Judge, Jan is Jack’s mom and there is no need for Jan to take any steps to ensure that her rights as Jack’s mother are recognized in other jurisdictions, even those that don’t recognize same-sex marriage.  This opinion thus denies Jan, and women and men in Jan’s position, the ability to obtain the one document that most legal practitioners feel would protect Jan’s ability to exercise parental rights in our nightmare soap opera hypothetical.  You guessed it, an Order of Adoption stemming from a second-parent adoption.

Why did the Judge decide this?  Well in part because she’s right.  Under New York law, Jan is Jack’s parent and no further steps are needed in New York for her rights as a parent to be recognized.  Marriage decrees and birth certificates are enough under the eyes and laws of the State of New York that nothing more need be done to enforce the rights of this family.  They are a family.  Period.  Nothing more need be said.  Valid marriage + valid birth certificate = family regardless of your sexual orientation.   That is, in and of itself, a wonderful statement and recognition of how far New York has come in recognizing marriage equality and the rights of same-sex parents.  However, as well-intended as this Judge was, and while her legal argument is correct with respect to the laws of the State of New York, the decision totally ignores the impact of Section 2 of DOMA, and ignores well-settled case law regarding the Full Faith and Credit provision mentioned above.  In holding that Jan cannot enter in a second-parent adoption because she already is legally a mother, the decision potentially eviscerates Jan’s parental rights and those of other same-sex parents when they are outside the borders of New York.  While I applaud this Judge for upholding the laws of the State of New York, it is somewhat arrogant to assume the laws of New York are so superior to the laws of other states that, in the face of a well-recognized danger presented by disparity in laws as they apply to marriage equality throughout the United States, and the enforceability of a federal statute that expressly permits states to reject Jane and Jan as a married couple, New York law will always protect this couple and their child.  The laws of the State of New York do not protect this family everywhere they may travel.

For the Judge in Seb C-M, a compelling fact in denying the second-parent adoption was that Jan already was on Jack’s birth certificate (keeping it simple by keeping the characters in our melodrama consistent, the people in the case of course have different names).  The Judge seemed to feel the birth certificate and presumptions surrounding birth certificates are sufficiently strong to carry Jan safely into other jurisdictions.  This is a legal argument called “portability”.  Indeed, there is a relatively significant body of law that addresses the “portability” of birth certificates with respect to same-sex marriages.

In re Sebastian, 25 Misc.3d 567, 572 (Surr. Ct. N.Y. County 2009), is another case that explores the rights of same-sex parents who are married, have a child, and wish to protect the non-genetic or non-gestational parent’s rights in jurisdictions which do not recognize same-sex marriage.  Indeed, Sebastian sets forth a detailed analysis of the “portability” of birth certificates and of Jane’s and Jan’s rights as parents.  The Court in Sebastian ultimately concluded that in order to protect someone like Jan, she would need to enter into a second-parent adoption as that is the only type of legal/court document that would have to be recognized in states which don’t recognize same-sex marriage.  Sebastian provided the necessary protection to same-sex couples which the court in Seb C-M has just taken away.

“[A]s the child of a married couple, Sebastian already has a recognized and protected child/parent relationship with both [Jane and Jan], arguably making adoption unnecessary and impermissibly duplicative. . . Unfortunately, while this is the case in New York, the same recognition and protection of [Jan]’s parental rights does not currently exist in the rest of this country, or in most other nations in the world. For this reason, the parties argue that only an order of adoption would ensure the portability of Sebastian’s parentage, and further ensure that the federal government and other states would recognize [Jan] as Sebastian’s legal parent.  Sebastian at page 573.

The Court in Seb C-M, however, felt that the presumptions afforded birth certificates are some of the “strongest and most persuasive [presumptions] known to the law.”  Seb C-M at page 2. However, just because New York recognizes this presumption in favor of same sex marriages, does not mandate that presumption also be recognized in other jurisdictions.  Indeed, Sebastian is clear that the laws of other states do not need to recognize that presumption:  In a detailed analysis, the Court in Sebastian noted that “[a] birth certificate is . . . only prima facie evidence of parentage . . . and does not, in and of itself, confer parental rights that must be recognized elsewhere. Accordingly, although the parties here may obtain a . . . birth certificate by virtue of their marriage, that birth certificate alone, without some judicial determination of [Jan]’s parentage would provide insufficient protection of [Jan]’s parental rights.”  Sebastian at page 576 (emphasis added).  The Court in Sebastian further explained that, under Section 2 of DOMA, a marriage contracted in New York does not need to be recognized in another state, and the legal rights flowing from that marriage, and the presumptions of parenthood from birth certificates may be ignored as well.

If this is our world, how then do same-sex couples protect their parental rights outside of New York?  The Court in Sebastian was clear that “A holding by this court that [Jan] is already a legal parent . . .  in this state may therefore offer insufficient protection in other states . . . just as DOMA itself precludes [recognition] based on marital status to same sex couples. Thus . . .  adoption is the sole means by which their parent/child relationship and the ‘rights and obligations incident thereto’ can be fully protected.”  Sebastian at pages 575-76 (emphasis added).  

“[t]he parties’ argument for an adoption here is based on their desire to have a determination of parentage that will be recognized everywhere, as opposed to one that other jurisdictions may be free to disregard. Although there is no Supreme Court decision on point, federal courts that have considered the issue have held that a judicial order of adoption in one state must be afforded full faith and credit in every other state, and that there can be no “public policy” exception to that mandatory recognition . . . .”

Sebastian at page 584.

The Court in Sebastian concluded that although Sebastian’s genetic mother had other potential legal avenues to establish her parental rights — avenues which are now firmly established in New York and form the foundation of the decision in Seb C-M, only an Order of Adoption would provide protection to a same-sex family outside of New York due to its entitlement to full faith and credit.  Sebastian at page 587.

“And, although it is also true that an adoption should be unnecessary because Sebastian was born to parents whose marriage is legally recognized in [New York], the best interests of this child require a judgment that will ensure recognition of both [Jane] and [Jan] as his legal parents throughout the entire United States.”

Sebastian at page 587.

So we are now left with the decision in Seb C-M which has denied a parent the right to establish her relationship with her child in a manner that will be protected outside the borders of New York.  This decision is at odds with the well-reasoned opinion set forth in Sebastian, which decision remains consistent with the principles and issues still presented by Section 2 of DOMA.  The Judge in Seb C-M was not unsympathetic to the plight of our friend Jan, and recognized that she left Jan at risk of facing a situation where her parental rights might not be recognized.  The Judge felt, however, that those rights should be addressed in the jurisdiction that denies the rights (see footnote 2 of the opinion).   Rather than  upholding the protective approach as set forth in SebastianIn the Matter of Seb C-M, leaves Jan to fight with a judge over Jan’s constitutional rights and marriage equality in a jurisdiction which is inherently hostile to her and her family; and she has left Jan to do this in a potentially time-sensitive situation as that set forth in our soap opera drama of a hypothetical.

While New York has come a long way in recognition of same-sex relationships and In the Matter of Seb C-M is a recognition of those advancements, the decision leaves same-sex couples at risk in other jurisdictions.  New York’s laws are (unfortunately) not superior to those of other states, certainly not when there is a statute like DOMA which allows another state to deny the rights New York provides to the LGBT community.  While I applaud this decision in its recognition of New York’s stance on same-sex marriage and recognition of same-sex families, it presents a potentially disastrous outcome by denying protections currently recognized under New York law, which protections are recognized and enforceable in other jurisdictions.

The Judge In the Matter of Seb C-M strives to make the rights of same-sex couples more enforceable, however, the ultimate outcome of the decision is to deny protections to same-sex families which are enforceable in places other than the State of New York.  Is it not better to have a family that can be protected and recognized throughout the United States as provided by In re Sebastian, rather than one which can only be recognized within the State of New York as provided in In the Matter of Seb C-M?  And more importantly, if Sebastian is authoritative case law, insofar as In the Matter of Seb C-M, contradicts Sebastian on so many points, is the decision In the Matter of Seb C-M not wrong as a matter of law?



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Post Traumatic Infertility Stress Disorder and National Infertility Awareness Week

April 2, 2013 | By: | Filed under: Check This Out, Deadly Silence, Egg Donation, In the News, infertility in the media, Infertility on Television, IVF, Personal Musings, Recurrent Pregnancy Loss, The Infertility Survival Handbook, Thinking Out Loud

We are rapidly approaching National Infertility Awareness Week (April 21-27); a week that is devoted to raising awareness of infertility and its impact on our lives.  This is an important week, not just because we are discussing infertility on a national level, but because many of us may are faced with thoughts and memories that have long since been buried.  Or have they?  Many an infertile woman will understand very clearly what I mean when I refer to that which I call Post Traumatic Infertility Stress Disorder (PTIFSD). This is the part of our lives where we are periodically haunted by our infertility (IF) treatment, sometimes years after it has ended.  Regardless of the outcome of our treatment, PTIFSD is signaled by a random flashback to one of any number of emotionally devastating moments during infertility treatment, a flashback that comes out of nowhere and is so vivid and acute that it catches our breath and momentarily disables us.

The first time I encountered PTIFSD was about two years after I had stopped IF treatment.  One day I was holding my baby while on line in Starbucks and a woman came in bursting with news for the friends who were waiting for her: she was finally pregnant with twins and her beta was high!  Upon overhearing this news (along with everyone else in Starbucks, most of whom probably had no clue what a beta is or why it was relevant) I had an immediate flashback to a time I too had learned I was pregnant, had a high beta and was probably carrying twins.  My flashback delved further, rapidly scrolling through memories of the messages on my answering machine, including those from three nurses at my clinic to congratulate me and share their excitement about my pregnancy.  Two of them gave me information that initially had not been shared with me, information which confirmed that I “must be” carrying twins, although that would later be confirmed by ultrasound.  My brain spun with these memories and I became disoriented.  It was only when the child in my arms, my child, grabbed my hair to get my attention that I snapped out of my seemingly trance-like state.  I forgot where I was in time.  I forgot I had a child.  All I could remember were those happy moments of learning that I finally had a healthy pregnancy under way and the devastation that followed approximately 9 weeks later when I learned that I had to undergo yet another D&C and that my dreams were once again, dead.

While some of us do emerge emotionally unscathed from infertility treatment, many of us carry battle scars that last a lifetime.  There is a cruel side of infertility treatment that people don’t often talk about and it involves the emotional scars we are left with, sometimes years after our treatment has ended and we are supposed to have “made peace” with our family building.  Not many people will acknowledge that they still have bad days, get jealous or angry (sometimes very angry) over something small and seemingly benign but nevertheless powerful enough to cause a shock wave of traumatic and painful memories from our days undergoing infertility treatment to overtake us and send us into a tailspin, the likes of which we haven’t felt since. . . well since our days of infertility treatment.  It has been a long time since I had a PTIFSD encounter but sadly, I had one recently and it was no easier to tolerate than was the Starbucks encounter I described above.  And what struck me most was that while I understood that my infertility might still be fresh in my mind less than two years after my husband and I walked away from our IVF Clinic, I didn’t expect those same memories to carry with them the same ferocity so many years later.  I mean, it has been over ten (10) years since I underwent an IVF cycle.  Certainly time must have tempered my feelings, yes?

Apparently the answer was a resounding “no”.  I was checking my email one morning when I received a surprise baby-on-the-way announcement from one of my childhood friends.  She and I not only went to kindergarten together but we went through infertility treatment together.  Despite having similar diagnoses, she went on to achieving several successful pregnancies via egg donation.  I was so happy for her that I knitted a little sweater for her first born.  What I experienced upon opening her email a few weeks ago, however, was hideously painful and I was left depressed, lethargic, moody and frightened.  My friend had gotten pregnant by accident, in other words, without medical assistance.  Indeed, much to everyone’s stupefaction, despite her age and many infertility diagnoses, she is experiencing a very healthy twin pregnancy.  As I sat there reading her email I was happy for her, but at the same time I was overcome by memories of us holding hands while waiting to have our blood drawn in the morning, and the time she called in tears because she finally had to face the fact that she needed to use donor egg if she wanted to achieve a pregnancy (or so everyone thought at the time).  And as I relived those memories (emphasis on the word relive) and read her email again I suddenly was overcome by anger and jealousy that I was not the one sending out the email.  Out of nowhere I was overcome with a jealous rage that bordered on hate. Hatred for someone I have loved since I was so small a person?  Yes, if I am truly honest I have to admit that I felt inklings of hatred for her.  For the next day or so I had mood swings and bit people’s heads-off for no reason.  It was only when I finally told my husband what I had received in that email that the feelings became less intense.  Somehow by acknowledging my feelings I was finally able to begin to move away from this non-stop video memory spinning inside my head.  Somehow this email had me caught in a perpetual mental loop of painful and devastating memories from my IF.  As the memories subsided, I remembered a conversation with a therapist I had seen during and after my IVF days.  During one of my sessions, she commented that what I was experiencing seemed a lot like post traumatic stress disorder; and so she and I created a new diagnosis, Post Traumatic Infertility Stress Disorder or PTIFSD.

I now have learned how to recognize and embrace the PTIFSD memories and use them to remind me of the joy that surrounds me.  I hope my PTIFSD is now truly at rest in my past.  But it’s okay if it is not.  Because I know where these feelings come from, and that they will go away.  These feelings do not control me, nor does my infertility continue to define me, instead it is the genesis of my growth as a human being, a woman, and a mother.

I recently had dinner with an infertility doctor.  He asked me why I wrote The Infertility Survival Handbook and whether it had been cathartic.  I told him why I wrote it – to let other women know they were not alone – but I also acknowledged that writing it wasn’t the least bit cathartic.  My healing process is one that continues.  Perhaps writing The Infertility Survival Handbook was my way of starting the healing process but I would be lying if I said I was finished with it.

The Infertility Survival Handbook was released during National Infertility Awareness Week (NIAW) in 2004.  Today as we approach NIAW, I am thinking of all of the women (and men) who are currently struggling to have a baby.  Now on its’ ninth (yes 9th!! Woot! Woot!) printing and as I contemplate writing an updated version, I think of all those women who have read my book and have emailed me, messaged me on facebook, or even called me (on a private number at home at 6am); women, who like me, struggle with the emotions that linger even after they have become mothers.  PTIFSD is not yet in any diagnostic manuals, but I wish it were.  I had two wonderful therapists who helped validate the emotions I was experiencing both during my treatment and well after it ended; therapists who believe in PTIFSD and its power.  Not everyone has people in their lives like my therapist who invented PTIFSD, or someone that understands and “gets it”.  And it is for those women I write this blog.

 

No you are not alone.  Being unable to conceive a child when you so desperately want one, is painful.  You are entitled to express that pain.  You should not be shushed or told to “just relax” so you can get pregnant.  And yes, that pain can stay in your heart and mind and hide there waiting to jump out and catch you off guard.  That too is normal and you are entitled to express that pain as well.  You should not be shushed or told “it’s over now just forget about it”.

 

You are not crazy.  Infertility is a part of your life regardless of the ultimate outcome.  It is an experience that shapes you and has the power to disfigure you – to change who you are – if you let it.  If you think you might have “Post Traumatic Infertility Stress Disorder”, talk to someone.  Get those feelings out.  Give your feelings a name.  Sometimes just by having a name, a reason, or a diagnosis gives you closure and helps you move past the feelings and you experience a sense of relief that allows you to let go.  I may not be like my childhood/IF buddy who is on the verge of delivering twins.  But I also am no longer be at the mercy of my memories.  By being reminded that my reactions and feelings when confronted with things that trigger painful memories has a name, PTIFSD, I have been able to regain my balance.  Or perhaps it is simply the understanding that, like anyone who goes through a very traumatic experience, I am bound to (at some point) relive that trauma, which has enabled me to begin to heal on a new, even deeper level.

 

Infertility awareness requires not only an understanding and recognition of the disease itself but of what that disease can do to us.  So if all the media coverage regarding infertility in the coming days (of which I hope there is a lot), finds you feeling a little more blue (or red) than normal, a little bit more withdrawn or melancholy, remind yourself that this media coverage is triggering some old buried memories, just as that woman in Starbucks and my friend’s email caused me to become momentarily blinded by sadness, grief, and anger.  It is okay that our infertility causes some of us to experience things and feel emotions long after we thought they were over.  That can be a part of infertility too, PTIFSD; and it too deserves some recognition during NIAW.

The point of NIAW is to help us recognize that we should not suffer in silence, that we should band together and make people aware that infertility is a disease.  What I wanted to share with you, and make people aware of is not just the medical diagnoses, but the sometimes unbearable emotional pain we feel.  We also should not be forced to suffer the emotional pain in silence.

 

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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: | Filed under: Current Affairs, Deadly Silence, Faith and Infertility, infertility in the media, Infertility In The Movies etc., Infertility on Television, IVF, Miscarriage, Peace to Parenthood, Personal Musings, Recurrent Pregnancy Loss, Stillbirth, The Journey to Parenthood, Thinking Out Loud, Third-Party Assisted Reproduction

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: | Filed under: adoption, Check This Out, Current Affairs, Egg Donation, Financing Fertility Treament or Adoption, In the News, IVF, known sperm donation, Personal Musings, The Journey to Parenthood, Third-Party Assisted Reproduction, Thoughts on Choosing an Egg Donor, Uncategorized

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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