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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 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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From Starbucks to Craigslist Sperm Donors Hit the Help Wanted’s

January 8, 2013 | By:

The perils of known sperm donation are reasonably well known.  For those who read this blog you know all about my concerns about the Starbucks’ Sperm Donors.  Alas now sperm donors are hitting Craigslist and probably other help wanted sections in newspapers and magazines.  The same issues I discussed with those gentlemen engaging in a little afternoon delight in the bathroom at Starbucks and delivering their sperm donation to the recipient waiting outside the door also apply to those gentlemen responding to any other help wanted ad.   As recent publicity surrounding a gentleman in Kansas reveal, even those with the best of intentions who attempt to protect themselves legally may still be deemed a daddy when all they wanted was to do a good deed.  Indeed, William Marotta, our Craigslist donor du jour, has acknowledged that “no good deed goes unpunished”.

For those of you unfamiliar with the case (and I cannot imagine there are many of you who don’t know about it, because news of this case managed to reach me under the rock inside the cave in which I dwell), a little over three years ago Mr. Marotta responded to a posting online in Craigslist by which Angela Bauer and her then-partner, Jennifer Schreiner, were looking for a sperm donor to help them conceive a child.  I have yet to learn all the gory details (that cave is pretty deep and news is slow to filter under the rock) but I gather that William, Angela and Jennifer entered into a written contract pursuant to which William, with the permission of his wife, agreed to donate sperm to Angela and Jennifer.  William declined to accept any money in exchange for his donation.  As purportedly stated in the contract — and let me be clear that I have not read the contract — William specifically stated that he had no intent to be a parent of the child, or have any involvement in its life whatsoever.  Angela and Jennifer were to be deemed the legal and natural parents of any child conceived from William’s sperm donation.  Angela and Jennifer also specifically agreed to assume all financial responsibility for the child and to hold William “harmless” from any claims against him for child support or other financial assistance for the child.  In short, the contract stated that William was never to have any financial responsibility for any child born as a result of his sperm donation.  (Just to make my life easier as I type, lets call Angela and Jennifer the “Moms”).

My devoted blog followers all know by now that the laws surrounding third-party assisted reproduction largely revolve around people’s intent at the time they conceive a child.  Even with the existence of a statute governing third-party assisted reproduction, it is prudent to explicitly state that intent in a legal contract between the parties to any third-party assisted reproductive arrangement such as that entered into between William and the Moms.  Cudos to William and the Moms for having the foresight to sign a contract stating that none of them had any intent for William to be “dad” and that the Moms would hold William harmless from any claims for financial support for the child.  That “hold harmless” provision is further evidence of their desire and intent to have complete and sole responsibility for financial matters pertaining the the child.  One major problem, however, is that (according to an NBC report), it appears that the contract they used to ensure that William wouldn’t have parental rights, was found on the internet.  I am not sure that William and the Moms had legal counsel as part of this process.

My devoted blog followers and/or anyone who has called my office with a contract they found on the internet and wish to have me review in connection with their plans to build their family, know that I feel that contracts found on the internet are nasty little buggers that get everyone into more trouble than they avoid, and I won’t touch one. Putting aside copyright violations (btw, when we reproductive lawyers draft these contracts we retain a copyright in them so any time someone uses one of them they are — in addition to risking their family status — violating federal copyright laws), template contracts found on the internet simply are not specific enough to address the nuances of reproductive law.  Case in point, William and the Moms.

My devoted blog followers and/or clients also know how anal I am and that I make sure that when drafting a contract of this nature — typically called a Known Sperm Donation Agreement — any applicable state statutes are mentioned in the contract.  I also like to mention the terms of the statute and make sure that everyone is following the proverbial letter of the law.  This is where we run into some problems as Kansas has a statute governing sperm donation, and William and the Moms didn’t follow the letter of the law. Regardless of where and how William and the Moms found this contract, they didn’t address a provision in Kansas’s statute on artificial insemination which provides that the parties to the sperm donation must have a licensed physician perform the insemination in order for the sperm donor to avoid having parental rights.

I have never fully understood why these statutes (and New York has one) require a physician to do the insemination.  I suppose it could be because when these statutes initially were drafted, home insemination kits weren’t available and legislators wanted to dissuade people from having the sperm donor personally inseminate the intended mother, especially if the intended mother is married to a man other than the sperm donor.  Anyone remember the scene in The Big Chill where Kevin Kline’s character gets down and dirty and does the deed with one of his and his wife’s best friends, played by Mary Kay Place, in order to help Mary Kay Place’s character conceive a child??  I suppose the whole infidelity thing combined with the desire to drive revenue to physicians led legislators to the notion that only a doctor should perform an artificial insemination.  But times have changed and now you can find a home insemination kit on the internet.  The primary demographic to which the home insemination kits are marketed are lesbian couples, just like the Mom’s at issue in the Kansas case which we are discussing.

Why are home insemination kits so popular you might be asking?  Well, for those of you fortunate enough to have all the working parts necessary to conceive a child without assistance from fertility doctors, being gay does not meet the definition of infertility and the insurance requirements necessary to obtain coverage for artificial insemination.  LGBT families have something called “social infertility.”  Whether or not you like or agree with the term “social infertility”, due to their sexual orientation, the Moms were/are infertile insofar as they lack the healthy sperm necessary to fertilize their eggs.  The Moms needed a sperm donor and it happens to be that cryopreserved or frozen sperm isn’t that cheap, and the processes involved in an “artificial insemination” (or to correct and update the terminology an “Intra Uterine Insemination” or “IUI”) ain’t cheap either.  Without insurance coverage, the average IUI cycle can cost a coupla thousand to even a few thousand dollars.  Enter the home insemination kit which costs under $50 including shipping and an otherwise healthy socially infertile woman has access to technology that will enable her to conceive albeit without the missing sperm.  As we’ve discussed, Craigslist, Starbucks, and online forums have become common ways for women like the Moms to locate sperm without the cost of using frozen semen.  Added in is the benefit of being able to meet your sperm donor and be able to provide your child with some background regarding one of his or her progenitors.  Times certainly have changed and the law, certainly in Kansas, has not kept pace.

Speaking of times-a-changing, the “child” to whom William contributed his genetic material is now a three year old little girl and the Mom’s have since separated.  Due to an illness, one of the Mom’s had to apply for state financial aid and Kansas got a little nosy and demanded that the Moms reveal William’s identity before it would provide any financial aid.  Upon learning of the situation and William’s identity, the Kansas Department for Children and Families decided to go after William for $6,000 in child support together with imposing an ongoing obligation to provide support.  William can’t afford any of this and justifiably is fighting Kansas’s claim.

The whole thing is wrong and is a glaring example of good intentions gone awry, lack of education and awareness of reproductive laws as they pertain to things like sperm donation, the failure of state legislatures to keep pace with societal changes, and the frickin’ frackin’ fiscal cliff.  I understand that Kansas is broke but I would much prefer that it spend state resident’s tax money going after all the “dead-beat dads” who are intentionally leaving their children to starve.  Dads who intended to father a child — and who may well have conceived that child or children through a physician-assisted artificial insemination or other third-party assisted reproductive technologies — and then post-divorce abandoned their financial obligations to that child or children. Why are we going after a man who never intended to be a father and did his best to help women who did want to be mothers? Especially when the mothers want to be financially responsible for their child but due to medical circumstances beyond their control cannot cover all of the costs associated with child-rearing and are forced to seek financial assistance from the state.  Financial assistance, I might add, to which a single mother who knows nothing about her child’s biological father would be entitled.

So here we are with a legal battle being fought by good people with good intentions but who made a mistake.  I understand Kansas has a right to seek child support from a genetic parent, but in this instance, that genetic parent should be standing in the shoes of an anonymous sperm donor.  But for the fact that the Moms didn’t use a doctor when they conceived this child, William wouldn’t be in this mess.  To many people it seems like an awfully unjust and harsh response by Kansas.  Sadly for the Moms they don’t live in a state which might have permitted one of them to adopt the child in order to assure both parents full parental rights, or which otherwise recognizes same sex relationships such that both of the Moms could be listed on the child’s birth certificate and further be considered the legal and natural child of the Moms’ relationship.  Steps which would not only have protected their parental rights in a same sex relationship but would have protected William from this mess.  If both of the Moms were recognized here there wouldn’t be a need to find William.  Sadly Kansas is not an LGBT friendly state.  Combine that with the facts of this case and many people wonder if the Moms aren’t being singled out as a result of their sexual orientation.

Would the single mom to whom I just referred, who doesn’t know details about her child’s father, be similarly pushed into identifying him in order to be entitled to financial assistance from the state?  Somehow I don’t think so.  Somehow I think that a single mom would have gotten the financial aid more easily than this now single Mom who conceived her child while in a same-sex relationship.  Is that which is taking place in the State of Kansas a violation of the Moms’ rights under the Equal Protection Clause of the United States Constitution or otherwise discriminating against them?  One could certainly make the case (and hopefully someone is making the case) that but for the fact that they were involved in a same sex relationship at the time this child was conceived, and but for the fact that they didn’t have the financial resources to be able to access affordable infertility services that they might not be in this predicament.

As for William, he is the poster man for someone doing a good thing but not crossing all of his “t’s” and dotting all of his “i’s”.  Had he known about the requirement that the Moms must use a physician to perform the insemination and/or insisted that they use a physician before he would consent to the donation, he might not be where he is today.

But that doesn’t make what Kansas is doing okay or even justified.  I’d really much prefer they go after some of the dead-beat dads out there who owe the mother of their children a heck of a lot more money than is at issue in this case.  Seriously folks, let’s get our priority’s straight.

Let’s go after legitimate law breakers before we go after good people who made a technical error.  So what if the doctor didn’t pull the plunger on the syringe?  Give me a break.

 

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