Category Archives: Faces of ALI

Faces of ALI: The Unique Hell of Secondary Infertility

Esperanza

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

2010 Teen Choice Awards - Show

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

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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.

***

Hardcore TTC

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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

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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

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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.

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How Can We Educate the Public About Infertility?

I was a guest on the Bitter Infertiles podcast on Sunday. Boy, I miss those girls!! This blog has become such a mishmash of fashion and infertility and even lifestyle posts. But it’s important for me to note that it started as an infertility blog, a personal diary detailing my own journey with loss and then became something else: an advocacy tool to try and publicize the real ALI stories out there: the ones no one hears about. The ones 1 in 8 are struggling with. Your friend, your sister-in-law, your colleague would tell you these stories if they could.

My experience with the Ricki Lake producers was really wonderful in the end: they publicized my blog post about Faces of ALI on their site via Twitter and so much traffic and wonderful emails and comments came in. There was no negativity. And it made me wonder: perhaps there needs to be a SHIFT in the way the story is told to the media.

It was quite clear at BlogHer that Martha Stewart, Katie Couric and even the Today show are increasingly looking to bloggers to tell the stories. Katie Couric actually asked us to pitch her stories about untold issues Americans are dealing with: Kathy Benson and I both tweeted about the ALI community.

I am a former PR person who dealt with product launches, political campaigns, controversial issues and even court cases. I was quite good at my job, actually.

But things have changed. I was listening to NPR this morning and there was an interesting debate about peer-based platforms and how they have grown. Silicon Valley has established a totally different way to run things: more bottom up, with engineers more in power and a less top heavy structure.

This was on top of another NPR story about a preponderance of evidence that statistics don’t change people’s minds: STORIES do.

It made me think: We need to tell our stories, sell them even, to media outlets who are open. And it seems like a lot of them are open.

Because here’s the thing: all of our stories are full of the human experience. Our stories display great hope and love and dramatic arcs. I feel like one story could occupy the gifts of some of our greatest storytellers. Our ordinary stories are not ordinary at all: they are extraordinary. I know that reading Faces of ALI changes viewpoints: that NPR story is right.

There was some talk about putting together a blogger platform (a peer-based platform, as it were) as a place for us to tell our stories and share them with others.

What do you think? Can we change the crappy narrative currently being told? How? What ideas do you have?

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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.

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Infertility and EXTREMES

So. You might have heard that Ricki Lake tackled the topic of infertility on her show today. Here’s how it was advertised: “Ricki explores infertility to expose the extremes that couples go through to conceive.”

Keiko sums up the show very well, here.

Media seems to like to pair the word infertility with another word: extreme. So much mainstream media coverage focuses on the outliers, the 1% of all infertility cases: the woman who uses her 60 year-old mother as a surrogate, the oldest woman in the US to give birth to twins, the woman who swam in the fertile waters of Bhutan and was suddenly pregnant in her 40s.

These cases are not the norm. Why is the media afraid to explore the norm?

1 in 8 people in the U.S. suffer from infertility. That’s 7.3 million people in this country. People who suffer from infertility are your neighbor, your friend’s sister, your aunt. Maybe even you. What’s worse? No one talks about infertility, or if they do, they use hurtful phrases like “Just relax” (advice proven not effective in studies, by the way) or “Just adopt,” which is a time-consuming, very expensive process with no guarantees.

The word “extreme” is not one I identify with.

Words that I personally felt while dealing with infertility?

Sad.

Devastated.

Hopeless.

Marginalized.

Misunderstood.

Sad. (It’s worth saying again.)

The problem is, of course, that by only hearing about the extremes via the media, the general public’s lack of awareness of how devastating this disease is increases. (The World Health Organization classifies infertility as a disease. Who knows this? Not many people.) And friends and neighbors and relatives continue to suffer in silence and be misunderstood.

Because I felt that infertility was something not accurately by the media, I started my own series of articles called “Faces of Adoption/Loss/Infertility. To represent the 1 in 8 who can’t afford treatments or adoption and/or go through multiple losses: who lose their children too early. I did this to make others feel less alone.

To read and listen to these stories, please go here.

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New Infertility Podcast!

So, you guys probably already know the hilarious, legendary Mo from Mommy Odyssey. You haven’t heard of her? Get thee to her blog page now. And read this.

So after my anihilation humiliation er, personal challenge at BlogHer, Mo had this brilliant idea. Why isn’t there a podcast for people who are going through adoption/loss/infertility? So many women and men are dealing with this stuff, and not all of them (not even most of them) blog about it or go on the infertility boards.

Enter “The Bitter Infertiles!”

Featured players:

Mo: who hosts, and does all of the technical wizardry.
Shelley: writes the blog Tales From The Waiting Room.
Cristy: writes the blog Searching for Our Silver Lining.
And, me ;)

We all come from different experiences: Mo’s had three miscarriages, one stillbirth at 22 weeks, and a whole lot of surgeries. Shelley is dealing with a diagnosis of unexplained infertility and is preparing for an FET after her first round of IVF failed. Cristy has dealt with 3 failed IUIs, 3 failed rounds of IVF/FET and two early miscarriages, and zero explanation for their infertility other than it’s a case of “bad luck.” And I’m the parenting after infertility perspective.

ALSO: we do a weekly Faces of ALI segment. This week we interviewed Kristin, from Dragondreamer’s Lair, who talked about dealing with RPL, parenting her three boys and also told us some hilarious tales. I am so inspired by her sense of humor, which has remained intact throughout all of her experiences. (Aside: The hardest I laughed at BlogHer was when Kristin told me the story that is included in this podcast.)

I hope you enjoy it. I am so proud of Shelley, Cristy and Kristin and Mo, who had the vision and expertise to make this happen.

Go LISTEN!!

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