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Five Hundred Twenty Five Thousand Six Hundred Minutes – How do you measure your life in infertility treatment?

March 26, 2015 | By:

 

Five Hundred Twenty Five Thousand Six Hundred Minutes

How do you measure your life in infertility treatment?

How do you measure a day, or a year?

 

Five hundred twenty five thousand six hundred tests
Five hundred twenty five thousand moments, oh dear
Five hundred twenty five thousand six hundred dollars
How do you measure, measure an IVF year?

In daylights, in sunsets
In phone calls, in cups of coffee
In inches, in pounds, in needles, in surgery
In five hundred twenty five thousand six hundred minutes
How do you measure, a year of infertility?

How about love for the baby you’re creating?
How about love for the people helping you conceive?
How about love for your partner or a friend?
Measure in love

Cycles of love
Cycles of love

Five hundred twenty five thousand six hundred blood draws
Five hundred twenty five thousand follicles to count
Five hundred twenty five thousand six hundred heartbeats
How do you measure the life of an infertile woman or a man?

In diagnoses that she learned
Or in times that he cried
In money they lost or the day the baby died?

It’s time now, to sing out
Though the story never ends
Let’s celebrate
Remember a year in the life of our infertile friends

Remember to love
Oh, you got to, you got to remember to love
Remember to love
You know that love is a gift from up above
Remember to love
Share love, give love, spread love
Measure in love
Measure, measure your infertility in love

Cycles of love
Cycles of love
Measure your infertility, measure your life in love

Inspired By Rent — Seasons Of Love, Lyrics

 

 

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Post Traumatic Infertility Stress Disorder and National Infertility Awareness Week

April 2, 2013 | By:

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 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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