Faces of ALI: The Unique Hell of Secondary Infertility

One of the known media narratives, illustrated here (and in the subsequent interview by Terry Gross on NPR) is that, well, men and women getting old causes infertility. There’s a bit of a “blame the victim” mentality here: men and women should forget about societal norms and careers and graduate school and get their family planning on YOUNG.

Esperanza’s story is the real world example of what happens when a well-educated woman in a circle of other well-educated professionals values having a family above all else. And what happens when infertility happens to young people, anyway?

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A Born Mother

Esperanza’s life has been shaped by two major factors. The first is her love of children. From a young age, Esperanza knew she wanted to be a mother. She loved everything about babies and children, and she was a natural around them. She was the girl who would rather babysit than hang out with friends. All of her after-school jobs were childcare related.

“When I was little I wasn’t all that into Prince Charming. I didn’t really think much about whether I would eventually find the perfect guy. When I fantasized about the future it was children I saw. I assumed I’d have them with someone I loved but I didn’t think much about what that person might be like. I just really didn’t contemplate marriage all that much.”

The second factor is the reproductive history of her mother.

“My little sister died when she was two months old (I was two). She was born very sick and never left the hospital…

After that my mother lost three pregnancies – each at five months. All boys. I’ve visited my sister’s grave often. I don’t know where those babies were laid to rest.”

Esperanza was a girl who wanted more than anything to become a mother, yet she knew how hard this goal might be for her to achieve.

***

The Prom Queen

Although Esperanza was a high-achieving student, eventually admitted to one of our country’s best universities and was also, literally, a prom queen, she felt different from her other friends and schoolmates who had other dreams. Dreams of exciting careers, romance, love and adventure.

Esperanza’s more down-to-earth dream was having a family of perhaps two or three children. She took a job that would support her goal. She chose to be a teacher because of the flexible hours and vacations. And she looked for a mate, someone who would also want to build a family. Someone kind and gentle and principled who would be a good father. But someone like that was hard to find within her circle of friends in their mid-twenties, who were more interested in partying and traveling and having a good time than settling down. She began to despair. It wasn’t until she was 25 that she met her very first boyfriend, a man she calls Mi.Vida. Mi.Vida was kind, loyal and he loved her. But Esperanza soon found that Mi.Vida was not ready to jump into the parenting waters as quickly as she was. She had to decide: should she wait it out? It had taken her so long to find someone. She decided to let Mi.Vida know her strong interest in having children, so he knew her goal early on. They stuck together and after two long years of conversations (and couples counseling), they decided to start building a family together. They were 28 years old when they went down to City Hall to cement their commitment.

Esperanza was worried when they started to Try To Conceive (TTC) because she had suffered from amenorrhea, which is the lack of regular periods, and this was yet another reason she wanted to start building her family as quickly as she could. To prepare her body, she began a strict regimen of traditional chinese medicine, yoga, whole foods and accupuncture three months before TTC. To Esperanza’s shock and surprise, she got pregnant within six months. But her surprise soon turned to sadness when she discovered her pregnancy was not viable: it was ectopic and life-threatening. She needed emergency medical measures performed. Grief quickly turned into panic as she remembered her mother’s horrible history.

What is an ectopic pregnancy?

It was a blow, to say the least.

It took time to recover from her physical and mental anguish. Making it worse was when she reached out to friends for support, she was rebuffed.

“The struggle to start a family is not something our society shares. We would, and do, share the start of our family with the world when the word struggle is not included; but when that word finds its way into the experience, suddenly we are shut down.”

Gearing up to try again took courage, but anyone who has ever met Esperanza knows she does not lack for that. Four months later, she was pregnant. Nine months after that, she gave birth to her daughter Isa.

She was the youngest mother she knew.

***

Oh, The Places You Won’t Go

When you have children young within your circle of friends, it’s a more difficult transition. Your peers are out making careers happen, advancing by working crazy hours, networking at parties, building a savings account. Traveling, having adventures. Going to concerts.

Mi.Vida had a difficult time with the transition of being a young parent. Mi.Vida has a passion for indie music, and produces several important and influential music events in their urban area as a volunteer project, in addition to his important work for a non-profit. He didn’t want to give this hobby up: he had after all become a father younger than he would have cared to.

Esperanza thought it was important to give him space. She was settling into being a mother, too. It was a constant struggle to make ends meet. Neither of them were in a place in their careers where they had room to breathe financially. Esperanza longed to eventually become a SAHM. But the area where they live has the second highest cost of living in the country. They considered moving, but all of their immediate family lived in the area and provided help with childcare and invaluable love. It was a tough decision, but they decided to stay.

As Esperanza entered her thirties, she began to talk more about having a second child. The longer she waited, the more panicky she became.

“There is a part of me, the part I believe is driven by my biological imperative, that wants to have a baby right here and right now, come hell or high water. This voice oscillates between a loud shouting and a quiet whisper and is fairly persistant, though frequently drowned out by the day to day.”

But Mi.Vida was resistant. They went to couples counseling to speak about the difference between them. Mi.Vida was fine having one child, Esperanza was not. Slowly they worked towards closing that gap: compromises were made on both sides. Esperanza agreed with Mi.Vida that they would live in the city permanently (something she wasn’t keen on), and Mi.Vida agreed they would begin to try to conceive soon. Eventually, Mi.Vida expressed his own desire to have a second child:

“He mentioned how much he loves being a father, how he appreciates the challenges of parenthood even if they sometimes feel overwhelming; while he misses the lazy carefree existence of life without kids he also values all he accomplishes as a father. He says he loves the connection he has with Isa and looks forward to nurturing a similarly fulfilling relationship with another child. He also says, for all its nuanced complexities, that parenthood has brought us closer together and he wants to build our family knowing that we, as a couple, will grow too.”

They were ready to try again.

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Hardcore TTC

Esperanza quickly took control, using temperature charts to figure out when she was ovulating. She honestly described the not-fun methods of lovemaking and timed intercourse and the stress of having to time it all perfectly. The stress that it took on their relationship. And as each month passed, she began to worry. Why wasn’t this happening for them?

When nine failed cycles became ten, and ten became eleven, she realized that they would soon fall into that dreaded statistic: those who have failed to become pregnant after 12 months of trying. Those couples are advised, if they are under 35, to seek fertility testing. So after the 12th cycle, Esperanza made the appointments for the testing: an Hystosalpingogram for her to test whether both of her Fallopian tubes were open, blood tests to check her hormone levels of CD3, FSH and E2, and an appointment for Mi.Vida to check his sperm counts and motility. She felt pretty confused.

“For the first time since I started building my family I have no idea what to expect. For the first time, I don’t have any expectation of getting pregnant. I haven’t counted out when I’d be due if I got pregnant during the next cycle. I haven’t wondered what I’ll do about maternity leave or taking a year off of my job. I haven’t made any possible plans in my head, I haven’t laid out any probable futures in my mind’s eye. In that place where all those dreams used live, there is only emptiness.”

She thought that the results would probably be normal. She suspected she might be faced with a diagnosis of unexplained infertility. After all, she had gotten pregnant twice in one year only a few years before. She thought the RE would give her a recommendation for a non-intrusive IUI cycle. Maybe a prescription of Clomid.

She was wrong. Dead wrong.

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Disaster

The first result they got back was Esperanza’s HSG test. Both of her tubes were clear. Then she got back the blood test results. One of the results (the E2) was on the higher range of normal, and her RE advised her to get the AMH test, which is a more reliable predictor of ovarian reserve. (How many eggs a woman has.)

Meanwhile, Mi.Vida’s results came back and they were not normal. Almost all of his counts: numbers and motility, were low. More worryingly, traces of blood were found in his sample. He was advised to see a urologist.

Then came the deadliest blow: on a Friday morning on a cold January day, the RE called Esperanza to tell her the results of her AMH test. The number was shocking: .59. The RE told her she had the ovarian reserve that he would expect to find in a woman who was 42-45.

“He also said that while he can’t predict I’ll start menopause when I’m 40, it could mean that. This isn’t just about my desire to have another child, this has lasting health consequences.

When I google ‘AMH under 1’ I find a lot of stuff. All of it is depressing. Some of it is terrifying. Women who only retrieve one or two eggs during IVF. Young women – in their twenties – being advised to use donor eggs immediately and not even try with their own eggs.”

Esperanza is only 32 years old.

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What’s Next?

Esperanza and Mi.Vida will be seeing their RE this week. Their RE has recommended moving right on to IVF.

But IVF is beyond their means. Already financially exhausted by the struggle to be young parents, they are tapped out. They have had to explain to friends and family who have urged them to “just adopt” that adoption is twice the cost of IVF, at least.

What is IVF?

***

The Unique Hell of Secondary Infertility

Secondary infertility is a unique kind of hell. Many who are going through infertility want one child so badly. You worry you will offend them with talk of your desire for a second child. You have a child already. Doesn’t it seem greedy you want more than one?

And yet in America, almost no one has one child. The average family has two children. So everywhere you go, you are surrounded by families with two kids. Announcements on Facebook of second children (or even third or fourth children) are everywhere you look. Grief is everywhere.

Of all the people I have profiled, Esperanza’s story has been both the easiest and the hardest to write. Esperanza is my best friend. I was also diagnosed with premature ovarian failure at age 32. I never thought the same thing would happen to her. It kills me that this is happening to her. She came to help me with my son’s birthday party back in November. While the rest of the parents and I chatted, Esperanza jumped in and played pirates and balloon swords and gave a merry chase while we looked on, exhausted.

My friend Roumi said: “She’s a mom, right? I hope so. She’s a born mother.”

And so she is.

To read more about the remarkable Esperanza’s journey, please go here.

Who Are The Faces of Adoption, Loss and Infertility?

The Ricki Lake Show, since airing today’s show, has been responsive to the ALI community, and has shown an eagerness to talk more about infertility in the open. I welcome and appreciate this chance for dialogue and hope it will raise awareness! This is being cross-posted over on The Ricki Lake Show blog…check it out!

Today I wanted to talk about my series, Faces of Adoption/Loss/Infertility (ALI), which is an attempt to spotlight a disease that 1 in 7 of Americans suffer from. And yet, it is rarely spoken about. Infertility could be affecting people you know, but they may be afraid to share the details with you, because of fear of being criticized or misunderstood.

Details like this:

— Your neighbor might be like Courtney Cheng. She was thrilled to become pregnant in 2010, after marrying her husband in a fairytale wedding. At the time she said:

“I’m feeling all kinds of emotions. A little scared for how much our life is going to change, excited to go on this journey only given to women, I’m even looking forward to watching my body change. (I say this now still looking exactly the same way I did a month ago!)

By June 2011, she had experienced four miscarriages and had no clear answers from doctors as to why. She was devastated. Her spirit forever changed, she said:

“Even when I’m covering up the sad like today, I still just want to be pregnant. I want to be having the baby that I’m not having any more, who is buried beneath a tree. It’s just not fair.”

Something amazing happened to Courtney this year. You can click here to read about her story.

— Your cousin might be like Sarah, a young woman in her twenties, married and ready to have a family. But after trying for a baby for two years with no results, she was diagnosed with endometriosis, an extremely painful condition that also effects fertility. After two surgeries and thousands of dollars spent on operations to correct the constant pain she was in, she decided to look into adoption.

She was quickly matched with a birth mother. But she soon learned that the expenses for her adoption would exceed $30,000! Frantic to complete the adoption before the baby was born, friends and family held online auctions and she investigated tax codes and selling their home to boost their savings. She and her husband had to figure out a way to raise thousands of dollars in a few months. What happened? Did she adopt the baby? Click here to find out.

— Your friend might be like Leah. Leah was diagnosed with Stage IV endometriosis as a young single woman and was faced with a hard choice: should she pursue fertility treatments now while she was still young, which was her only chance to become a biological mother? How would she handle dating? Would she feel alone and isolated pursuing treatments? You can click here to hear about Leah’s journey, and find out what path she finally chose.

I’m hoping by reading these stories, people can understand more about infertility, which effects 7.3 million Americans. Possibly, your neighbors, your friends, your relatives.

Thank you.

A Happy Occasion: The Bodega Bliss Baby Shower

Yesterday I was honored to attend the Bodega Bliss baby shower. I teared up as I told her friends and family:

“I have dreamed about attending this baby shower for a long time.”

It did not disappoint.

When I met Emily, one of the first things she asked me was: “How’s Bodega?” I think Courtney’s story and words have touched so many hearts in the ALI world and beyond.

“The Devastation of Pregnancy Loss” was the first “Faces of ALI” portrait I wrote. I had been close friends with Courtney for over a year, and I both saw in person and read on the page about her struggle with RPL. I saw how drained she was, emotionally, physically and financially. So whenever I would see one of those awful empathy-free articles about infertility and loss in the mainstream media, mostly profiling the wealthy and whimsical (and, ugh, don’t get me started on the gross comments!), I would boil over with anger.

Addendum: Not too much has changed, alas: Mel pointed out a crass and classless “opinion” piece about the late Maeve Binchy (published on the day of her funeral, no less!), which questioned whether her childlessness made her a lesser author.

Courtney has navigated this pregnancy, her fifth, with a unique equanimity and serenity. It’s been inspiring to follow.

The shower, like its recipient, was heartfelt and beautiful. Courtney accepted every gift, every gesture of goodwill, every piece of advice with so much love and thankfulness and often tears of joy. Court’s bloggy friends Esperanza and Izzy were also attendees. At one point, Courtney explained how the four of us met. That we were all ALI bloggers. To the testament of her friends and family, no one flinched or blanched. Conversation continued to flow and there was no “EEEK!” reaction.

You know, that noise when the record needle abruptly gets yanked in unoriginal movies?

The sound of the conversation slowly turning to other things in a natural way was a glorious and triumphant moment.

Faces of Adoption/Loss/Infertility: The Den Mother

Kirsten “Kir” Piccini believes she was born an “old soul.” Her maturity at a young age was quickly recognized by everyone around her. By the age of six, adults were calling Kir “Little Mother” and giving her responsibilities like handing out food and filling drinks at family functions. In gatherings with children her own age, she was always anointed the leader. As she grew older, she became the one the other children sought out for answers and guidance. She enjoyed her role as the worldly and adult-like figure. She wore her mantel of authority with both gravity and levity.

In college, she rebelled for a while and tried to be “just one of the students,” but it didn’t feel right. She eventually became the Resident Adviser in her hall, then finally the Resident Director of the college she graduated from.

“I loved living in the halls with the kids. I worried about them, I fought with them, I disciplined them. I had young women coming to me when a test went bad, when a relationship ended and when it began; I got to experience everything with these young people like it was happening to me. I was honored and shell shocked and always available.”

Kir received letters from parents of her students thanking her for “mothering” their children and being a good role model to them. Once she joined the workplace, she continued to be the one other co-workers came to for advice and support. When Kir met and married her husband, John, she was so excited to finally become a bona fide mother to their children. But she soon ran into the roadblock so many of us face: infertility.

“This, my friends, is irony of the most horrible kind. I never knew growing up if I WANTED to be a mom, maybe because everyone treated me like I was one already. I never doubted that I would be; I was not prepared to Not be.”

Suddenly Kir wasn’t the one with the answers. It was a difficult and unfamiliar place her to be in.

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The Light That Dimmed

Kir loves many things in life: her husband, Aruba, Law & Order reruns, beautiful high-heeled shoes, giving the perfect gift, cheering people up, cupcakes, beaches, red lipstick, sunflowers, summer, makeup, the Today show, being on TV and the stage, the ocean, the color blue and reading women’s fiction and magazines. She HATES Halloween and the game “Hide and Seek” because she is afraid of the unexpected and she doesn’t like to be scared. She pretends to like her husband’s beloved New York Rangers, because she gets to spend more time with him that way. In every picture you will see of her, she is smiling: her American row of teeth straight out of a dentist ad gleam and her eyes blaze with a sense of joy and mischief. You want to know what her secret is: how someone can glow with light in a mere image. There’s no bushel near her.

Credit: Kirsten Piccini

The truth is: her illumination was dimmed during her battle with infertility.

Kir dealt with the pain and frustration of infertility by becoming a den mother within the ALI world online. She became well-known for her knowledge, cheerfulness and support among those blogging and on the infertility bulletin boards. And she doggedly defended those going through infertility and their rights to pursue treatments. In response to someone openly wondering on a board what the big deal was, someone who posited that not having a child doesn’t kill people, she said:

“…how can anyone tell me that Infertility hasn’t killed a little part of me already? What kind of test can you give me to determine if some part of me isn’t dead right now because of going through this? I can say for me, in no uncertain terms, that is has. I have lived through some awful things in my life, I have scars that are deep and constant and these things, even though I survived them killed a little part of me. Infertility has done this too, it has on more than one occasion murdered my hope, slayed my faith, assaulted my mental health. All of these things in the real world mean that some part of me is gone for good.”

When Kir and her husband were unable to get pregnant, they moved on to fertility treatments. They were diagnosed with that tough beast: unexplained infertility. Having no answers as to why you can’t get pregnant is a surprisingly common diagnosis. Their doctor recommended IVF. But they would have to borrow money to pay for it.

“I think that the money issue is a topic that Mr Kir and I are hoping to avoid. We could do a home equity, we could get a loan …an IVF is possible for us and for that I thank God for being able to even have the discussion.”

In April 2007, they decided to bet all their chips on one cycle of IVF. Kir was hopeful but frightened. What if it didn’t work? What if they bet the farm and got nothing?

The house didn’t win this time. Kir was pregnant: with twins.

But she was deeply frightened.

“Plus this is a scary time too…even though my OB and her staff are beyond excited for us and they told us they would see us as early as next week, the part of me that trusts the clinic is still scared that something will happen before then. I know it’s silly, but hey so is Pregnancy. Nothing about me feels ‘real’ or ‘for sure’ anymore. Many times I just feel like I am play acting at being Pregnant. I won’t read the books, I won’t go to the websites and talking about it is just hard. Almost like I’m a ‘little pregnant’ but let’s not discuss it for about 35 weeks or so, Ok?”

And Kir’s pregnancy was anything but routine. She was afflicted with the dreaded hypermesis: excessive vomiting and nausea. Then she had to go on bed rest and had pre-term labor contractions. Finally at 35 weeks, her twins, her sons, Giovanni and Jacob were born.

***

“…I knew me before Infertility, and for all the things in my life that hurt me and threatened to do me in, I never once felt the pain I do now. I never felt that empty place in me that Infertility has left in me, the small place where I know I am now dead. We talk about it all the time, the fact that even as we move out of Infertility and become parents, we take this part with us. We all agree that reaching the other side of parenthood doesn’t mean we will ever recover from the pain it took us to get there. Many of you have used the words I use now..that some small part of you is gone forever, whatever you called it, it was the heart and soul of you, the naive and optimistic little girl in you; the one who hoped and when she prayed she thought it would come true.. All she really needs is a memorial service because she’s not here anymore.”

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The Treacherous Waters

Credit: Kirsten Piccini

For all of the research we know about the effects of infertility (we know it causes depression among those who suffer from it comparable to those who have cancer, for example) there has been little focus on the after effects of infertility. What do those who give birth to live children go through?

Kir’s cheerfulness and zest for life were both tested and enhanced by the arrival of her sons. Twins parenting is a unique parenting experience: a heightened and extreme version of being tasked with caring for all the needs of two precious lives at one time.

“I can’t believe I am going back to work next week…oh the tears lately. I can’t stand that I have to leave these two…they are getting to be more fun every day. The SMILES are real lately and they love their tubbies and recognize us. I fall more in love every single day.”

Because Kir had wanted so much to be a parent, because she had gone through so much to become a mother, she held herself to higher standards. She expected to be the very best mother ever to her precious boys, because she felt she owed them that. That she owed the infertility community that. She found herself comparing her mothering skills to many others, often mothers who conceived easily and had all the confidence in the world in their parenting decisions. She was very hard on herself.

“But as they grow, as they move and reach milestones and learn to pick things up, you realize that little by little they are taking little pieces of you with them. Your Heart IS outside your body now and every single decision you make now, from taking a shower to how much insurance coverage to get, to ‘What if I want a Saturday to myself’ is measured against every other mother who ever lived and you know that those decisions, however minor before children, are HUGE. They are life changing. For everyone.”

Many women in the ALI community don’t feel comfortable talking about the challenges of parenting, and feel that only gratitude and wonder should be expressed. Kir did a brave thing and was very honest about how difficult she was finding being a mother.

“It starts to become even more exhausting and sometimes in dark times, on bad days, you wish for those days when you could come home, take one for the team and head to the couch at 6pm with the TV on and have Diet Coke and Pringles for dinner. Of course that would mean that you were still TTC and all the crap that goes along with those evenings too, but just once in a while you do wish for that. Quiet, Peace, a place inside that is empty but content. Lately my insides are in mass chaos.”

Kir began to get chronic migraines and was eventually diagnosed with fibromyalgia. She struggled to find a way for the joy to overcome the difficulties and pain she was experiencing. One day in February of 2011, she accepted a writing challenge to try to tap back into her joyful spirit.

That day changed her life. She began writing fiction on her blog, serializing the romance of Kimmy & David. She drew a big crowd of fans who devoured her wonderful and fun writing. She created Proud Mamma Moments, a place to celebrate the small victories of parenting. She began her second romance, Gathering Buttercups. She’ll be one of the featured panelists at BlogHer this year. And, she was one of the very few chosen to speak in NYC at the “Listen to Your Mother” Broadway show. That one day in February sent her on the path to being the popular writer she’d always dreamed of being.

At the “Listen to Your Mother” show, she read an essay about the simple and complex joys of walking with her twins in Manhattan.

But infertility is never too far away from her thoughts. This Mother’s Day was a conflicted time for Kir.

“Sometimes I just want those miracles for the people I love; I don’t want anyone’s hearts to hurt like that during this time of the year.

And the hurt comes, the tears flow, the ache spreads, the guilt of having my children in my arms consumes me, making me question the worthiness of me instead of someone else.

People would like to tell you that once you hold your babies, no matter how they come into your life, that the pure pain of infertility will subside, it will stop throbbing and devouring your hope.

But they are wrong, because sometimes 8 years later, infertility still hurts.”

To read more about Kir’s remarkable journey and escape into her comfortable and fun world of writing, go to The Kir Corner.

Faces of Adoption/Loss/Infertility

I thought it might be a good idea, since I am working on the latest one and I have some new readers, to highlight my collection of essays called Faces of Adoption/Loss/Infertility (or ALI) here in this post, all in one place. The series features three extraordinary women. I feel so incredibly privileged to have been able to write up and share their stories.

What is Faces of ALI? 1 in 8 people of child-bearing age in the United States is infertile. (Resolve) The physical and mental pain, the tremendous expenses involved to adopt or pursue treatments and the amazing journeys so many of us go on remain mostly untold to the greater public. I read so many unforgettable stories about incredible women going through ALI on hundreds of blogs, and I began to want to tell these stories. I thought if I wrote third-person essays about what it’s like to go through adoption, what it’s like to lose four pregnancies in a year and a half and what it’s like to have to live childfree/childless after your baby was born still; perhaps these essays could create a greater understanding among those who haven’t lived as 1 of the 8.

Where to begin:

Part 1: The Devastation of Pregnancy Loss: A Profile of Courtney Cheng

Part 2: Adoption: Sarah in Three Acts

Part 3: The Memory Keeper: Childless/Childfree After Loss and Infertility