“I feel like a robot…I never expected this, to feel nothing…”

Today’s story is a guest blog from Little Miss PMA. Check out her blog and show her some support. Thank you so much Toni! XXX ~MM

As I sit here today, its hard to comprehend everything that has happened in the last six years, in particular, the last year, which has been the toughest I have ever faced. In March 2014 we said goodbye to our first, in March 2015 we lost our second. Two weeks apart. Both at 21 weeks gestation.

Six years ago we started trying to make a baby, a year later prompted a trip to the GP and referral to a fertility specialist. A lap and dye and six rounds of Clomid later and we are referred to IVF. Im polycystic and he has trouble across the board. Thankfully we live in an age where babies can be created in a lab, without this technology, our dreams of a family would be going down a very different path.

First round of IVF failed in March 2012, two attempts at a frozen embryo cycle were cancelled due to poor uterine lining thickness. Third attempt at a frozen transfer was going in the same vein but I begged to be able to transfer, I was desperate, it was now November 2013 and my patience had worn thin. They warned me I was wasting a precious embryo but I didn’t care, I needed to try. Lo and behold, our first ever positive pregnancy test!

To see two lines was pure joy, I shook all morning, kept poking my boobs to make sure it was real. We did it!! It had taken years but we got there. Eight week scan showed a blob with a flickering heartbeat. It was the most beautiful little ‘Squidge’ I had ever seen, I cried happy tears! Twelve week scan and Squidge only wants to show their bum but no problems detected. A smooth and beautiful pregnancy so far. No need to worry about our 20 week scan, right? We don’t want to know the sex and that is really our primary concern upon attending the anomaly scan.

The world stops. Our beautiful, precious, long awaited baby has a serious heart problem. A follow up scan confirms HLHS (hypoplastic left heart syndrome) basically the left side of the heart hadn’t developed. Three choices: carry on and operate two days after birth, carry on and provide comfort care until the baby passes approximately two weeks later, or end the pregnancy.

Ive always been pro-choice when it comes to a termination, I just never ever thought I’d need to make that choice, but given the odds and other factors, we felt the best thing to do for our baby, was to spare them from any suffering.

Six days later I was induced and 33 hours later, Milo was born sleeping. I had A LOT of morphine in my system and feel this stopped me taking in the enormity of it all, what I had just been through didn’t register. I watched my husband cry over our baby boy, unable to feel what he felt.

I was determined this wouldn’t define us, we wouldn’t be Bereaved Parents for the rest of our marriage. All my focus went into the next steps IVF wise. We were told it was a one off, bad luck, unlikely to happen again. I had to correct this situation, I had to give my husband the child he deserved.

We had one more frozen embryo to use, I couldn’t wait but guidelines state you must have three periods before trying again, our turn came around, but as luck would have it, the incubators broke the day before my transfer was scheduled and therefore it was cancelled. Talk about bad luck, I mean you cant write this stuff can you?! The following month we made it to transfer, but the embryo didn’t implant, another spectacular failure.

The waiting around between cycles was killing me. All I wanted was a healthy baby, I’d always assumed once I was pregnant, there would be baby, I was learning fast this wasn’t the case so decided to take matters into my own hands. After lots of research, I decided our best option was to head abroad. In November 2014 we travelled to Cyprus for 10 days. I had four embryos replaced the day before we travelled home. We tested on our wedding anniversary, another positive test.

The thrill wasn’t the same. The naivety of pregnancy had gone, I was now very aware of what could go wrong, not just heart conditions, but neural tube defects, chromosomal issues etc. I could only focus on what we knew, there was an increased risk of a heart defect but additional scans had been scheduled and so I had to try my best to enjoy it as much as possible.

Unlike my 1st pregnancy, this one was plagued with scares, increased nuchal measurement at 12 weeks, combined with bloods gave us a 1 in 11 chance of Downs. Talk of termination began to surface and I remember shutting the conversation down fast. I did not want to contemplate another one.

At 14 weeks the nuchal measurement had gone down and the heart looked OK. I am adamantly against CVS and Amnio as they carry a risk of miscarriage and after everything we had been through I couldn’t accept that risk.

We were fortunate enough to be able to afford non invasive prenatal testing, a simple blood test. However, baby had other ideas, the 1st sample didn’t have enough of baby’s DNA in it, clearly this baby wasn’t into sharing, but 2 weeks later after another test, we received the results. The odds were more like 1 in 59 million….phew!!!

Sixteen week heart scan showed a healthy heart, the anomaly scan revealed a perfect baby and the follow up heart scan showed it was perfect too. We were home free!

Nine days later I went to work as normal. My back and legs ached but I was 21 weeks pregnant and I carry BIG, nothing to worry about right?

At 4:00 pm I start contractions. Hoping they were Braxton-Hicks, I booked a GP appointment. By the time she saw me I was in established labour.

At 7:48 pm, Millie was born sleeping. Another beautiful baby that we couldn’t take home. I had contracted an infection and it is assumed that my cervix was incompetent and let it in. I had no warning, no symptoms, one day she was kicking the hell out of me, the next day she was gone.

Fifteen weeks later….I’ve completely shut down. I do not feel anything for my children. I clearly cannot cope and my brain is protecting me. I hate this. I feel like a robot. I’m on antidepressants and in counselling but its going to be a long road. I’ve lost both my children and I cannot cry. I am not angry. I am not sad. I’m just lost. I’m on autopilot. I never expected this, to feel nothing, I know the feelings must be there as my anxiety, insomnia and eating habits have all been affected. I do not know how to access my feelings.

My children deserve so much more. I’ve failed them. This wasn’t the plan. But I cannot stop. I cannot stop the longing for a baby, despite everything, I know I will try again. Maybe I’m mad, maybe I’m a glutton for punishment, maybe I’m broken?

Despite all of it, part of me still has hope. In the darkness there is still light. Millie was healthy, until the infection got to her, so that’s a step forward from Milo. It amazes me that despite all the pain and suffering, we as the human race, can still see good and light and hope.

Infertility will not beat me, a termination for medical reasons and a late miscarriage will not silence me. I will be heard, I will be counted, I will beat this. Never ever give up.

Love, Little Miss PMA xxx

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PCOS and Endo and Clomid, OH MY

If I hear “I am pregnant!” from one more person I swear!!! How many of you have that thought? I want to be happy for my friends and family and really I am, however it doesn’t stop the hurt and the envy. It is a loss. Now, I am grieving another loss. Let me start from the beginning…

My whole life I have struggled with “lady” issues. I had been on birth control since I was in 8th grade to help regulate my body, and for the most part it worked. When I got married in 2006, I decided to stop taking birth control and just four months after marriage I got pregnant! I am lucky to have a beautiful seven year old daughter.

When she was just a few weeks old I was rushed to the hospital with severe pain. I actually passed out in a store from the pain. They thought I had a blood infection from giving birth. They treated me with IV medications and sent me home after a week of being in the hospital. This was the beginning of my many issues. When my daughter was two years old we decided to REALLY try for baby number two.

I had not been on birth control since before my first pregnancy so I was a little worried when I didn’t get pregnant as easily as the first time. I started tracking my temperature, taking ovulation tests, etc… This lasted about six months. Then I had my first D&C. After that I was given clomid, the first of many medications I would try. I took it for over six cycles with no results. I then had my first laparoscopy. This is when I was diagnosed with Polycystic Ovarian Syndrome (PCOS). I had many cysts removed from my ovaries, endometriosis removed, as well as other things that are not important.

The diagnosis of PCOS opened my eyes to many things and all of my past health issues started to make more sense. Many women that suffer infertility suffer from PCOS. (As a side note, if you suffer from PCOS, I highly recommend finding a support group. It is an endocrine disorder that leads to many other health issues.) So, after seeing a fertility specialist and spending more money than we had, and having another three surgeries it came to an end. Not only did the medications, hormones, and surgeries not help; in the end I ended up having a hysterectomy. So at the age of 31 I sit here currently healing physically from the surgery I had just three weeks ago. Mentally, it is still a long road.

While I truly am thankful for my miracle little girl, I still have a hole where another child should be. I always wanted to give my husband a son to follow in his wrestler footsteps. I wanted to give my daughter a sibling, my sister is my best friend and I couldn’t imagine life without her. It is not easy. I feel as if I am grieving the loss of someone, but it is someone I only knew. The worse feeling ever is the loss of hope. That loss of hope is what I am dealing with on a daily basis.

I do have a bit of advice to share. If you have a friend suffering from infertility after having a child don’t say “At least you have one.” This doesn’t help. The loss is still real and having this said to them, even when the intent is to be kind, is not at all helpful or consoling. I know I am lucky to have my daughter, but I also know my pain is real.

I want to finish with this thought. As women we need to stop judging each other and comparing our situations, but come together to support each other. I pray that you all find peace and hope in your situation.

-Jayme Iannarelli

Were we being punished?

It wasn’t fair.

Why THEM and not ME? Why was it so EASY for other people?

Were we being punished?

These were my primary thoughts for the four years that my husband and I struggled with infertility. I’d known since being diagnosed in 2009 with PCOS, a hormonal disorder, that conception could be a long journey for us. I went off my birth control in 2010, and then we stopped using condoms and started tracking Jan 2011. 6 months later, and no positive. I asked my GYN about it at my yearly, and she recommended a hormone panel, given my known issues of PCOS, and endometriosis that was removed in my early 20’s.

The panel came back clear; accept for one vial that didn’t have enough blood to test, so I had to return to be redrawn. They also recommended my husband submit a sample for testing. On the day of my re-draw, everything went fine, aside from the front of my chart which displayed a large orange sticky note with “SEE ME” on it one of the nurse’s handwriting.

So after having my turn as the human pin cushion, I went back and had a seat across from the nurse. She laid out a piece of paper in front of me with the results of my husband’s semen sample. I scanned it, quickly seeing that something was very, very wrong.

You know in Charlie Brown, when the teacher talks, it’s always this weird noise that no one can understand? Well, that’s kind of what hearing you’ll never have a child with your spouse is like. Everything got very far away and very fuzzy. I remember the nurse putting her hand on my shoulder and I thanked her, checked out, and walked back outside. I made it to my car, where I very promptly lost it.

I kicked my tires a few times, got in the car, bashed the steering wheel, turned up the radio, and screamed. Long, and loud, and full of a pain that I have no words for. It felt very much what I imagine drowning to be like. I was caught in a sea of something, and I could not find the shore.

What followed was a year of deep mourning, and even deeper bitterness. I wish I could say that I handled it like a champ, but that would be a very big lie. I made my bitterness into a blanket, and burrito’ed myself in it. I was not a happy person. I put on a hell of a good show, but there were more tears that year then I care think about. Every joyful friend that got pregnant was like a slap in the face. I hated myself for it. I was happy for them…I was.

But I was also, deeply and profoundly, jealous.

I gave me on God in that year, and have yet to fully find a way back to Him. Was I being punished? What had I done wrong? I was a good person. I didn’t deserve this. My husband didn’t deserve this. He didn’t speak of our loss often, the child we would never have. We both struggled hugely with mourning the IDEA of a child. How do you grieve for something that never was? We’d never have a child that had his eyes, or nose, or laugh, or my hair, or chin, or toes.

What I did know was that someday, we would be parents.

Adoption was our first hope, but that was quickly sidetracked by the frankly massive price tag: on the low end, $15,000. On the high, $35,000. Top it off with the fact that no adoption is guaranteed. The biological mother has the right to change her mind. So we decided to look more into our options for me to carry a child.

In November 2012, we saw a reproductive endocrinologist. He gave me a list of procedures I would need to have done to see if I was even able to carry a pregnancy. He also wanted to send us for a second opinion to see an urologist who specialized in male infertility. We did all this, and found I was going to be able to at least attempt to carry a pregnancy, but my husband could not father a child without extreme medical intervention, including a genome workup, itself running in the tens of thousands of dollars.

So, in May 2013, we decided to try three rounds of inner uterine insemination (IUI) with donor sperm. We carefully selected a donor who matched physical and personality traits of my husband. I clearly remember asking Adam, “Are you sure you’d be ok with me carrying someone else’s child?” His answer: “But it wouldn’t be. It’s my child. Biology is just a set of DNA.”

We purchased three vials in June 2013, waited for my July cycle, and then began to test for the hormone surge that would signal ovulation, and the start of our first of three attempts. Together with my husband holding my hand, I went through the first cycle of IUI in early August, 2013.

We had to wait 14 days from the procedure to take a test. On that Saturday morning, I lay awake, trying to not throw up, a ball of nervous energy. At 5 am, I woke Adam up. It was time. I took the test, placed it on the bathroom counter, set the timer to 3 mins, and returned to bed.

Longest. Three. Minutes. Ever.

The whole time, I was babbling about how it was going to be negative, I didn’t feel any different, we were used to disappointment, so we should this be different? When the buzzer went off, I balked. I didn’t want to go look at the test. I didn’t want to not be pregnant again.

We went into the bathroom and together looked at the test. I’d bought a digital test, wanting no uncertainty. There, bright on the screen, no two words, but one:

PREGNANT.

I wish I could say I had a dream pregnancy and post partum recovery, but I didn’t. What I can tell you, is that after four years of grief, and pain, and loss, a complicated pregnancy, preterm labor scare, a month long hospital stay due to severe preeclampsia, and a c-section…

We became parents at 12:20 pm on March 28, 2014 to a stunning baby girl. Lily is perfection, and very worth the long wait.

–Emily

Science Friday: Infertility Clinic Courts Controversy With Treatment That Recharges Eggs

From NPR’s Morning Edition
by Rob Stein
March 5, 2015

A new fertility treatment aims to help women who cannot get pregnant because their eggs aren’t as “fresh” as they once were. The theory behind this treatment is that this type of infertility is caused by low levels of mitochondria in eggs–mitochondria are the proverbial “batteries” of the cell. These less-fresh cells’ batteries have simply worn down.

To recharge, mitochondria are extracted from surgically obtained immature eggs. Then, in a procedure very similar to IVF, the mitochondria are injected into the woman’s previously harvested mature eggs–along with sperm. The resulting embryos are transferred into the patient’s womb, with recharged batteries.

To read more, please check out the NPR story–VERY interesting stuff…though the treatment is not available in the US as of yet.

Science Friday: Infertile women want more support

Many women coping with infertility count on relatives or close friends for encouragement and assistance. But according to research at the University of Iowa, when it comes to support, women may not be receiving enough — or even the right kind.

“Infertility is a more prevalent issue than people realize. It affects one in six couples, and in almost all cases, women want more support than they are getting,” says Keli Steuber, assistant professor in communication studies at the UI and co-author of the paper, published this week in the print edition of the journal Communication Monographs.

The study comes on the heels of National Infertility Awareness Week, a movement started in 1989 by the National Infertility Association to raise awareness about infertility and to encourage the public to better understand their reproductive health.

Steuber and Andrew High, assistant professor in communication studies at the UI and the paper’s co-author, surveyed more than 300 women across the nation who were coping with infertility.

They found that infertile women want more support of all kinds — ranging from practical aid such as help with household chores, to advice and emotional reassurance like hearing a spouse say, “I love you.”

Without this support, women wrestling with infertility may become depressed or be less able to cope with stress, according to the researchers.

The good news is there are easy ways a spouse, relative, or friend can be more supportive, say Steuber and High. Though family and friends have the best of intentions, the study found they tend to dole out too much advice.

The researchers say it’s best to keep the advice to a minimum and instead focus on other ways to be supportive. That could be as simple as cooking a meal or connecting your loved one to other women with whom she can share her feelings.

“People are overwhelmed by unsolicited advice from family and friends,” says Steuber, who cites mom, female relatives, and other women with children as key perpetrators when it comes to doling out excessive information.

“Parents perceive themselves to be experts in having children, but they may not be well-informed. That puts women in an awkward position,” she explains.

As for spouses? High and Steuber found that while women cited their husbands as the strongest source of emotional support, many felt their spouses could provide more.

That’s not surprising, say High and Steuber, who note previous research has suggested that men feel uncomfortable talking about infertility issues. That can leave women feeling like some of their emotional needs are not being addressed.

“It’s a very real strain on the marriage,” says High.

The researchers suggest that husbands become a more active participant in their wives’ infertility treatments by attending appointments, advocating for their spouse, and helping them explore alternatives to pregnancy or other treatment options.

“Becoming more involved gives you the opportunity to be more emotionally invested,” says High.

And Steuber adds that couples who stick together through the infertility experience often have a stronger marital foundation moving forward. “If you can find effective, supportive ways to communicate with each other, you’re better equipped to handle stressors down the road,” she explains.

In addition to close friends and family, the researchers also looked at the support provided by doctors and nurses. “We found those in healthcare often see themselves as sources of information rather than someone who can provide emotional support or suggest a valuable network of contacts,” says High.

Though the researchers acknowledge there is no simple solution, they suggest doctors and nurses could help women feel better supported by spending additional face time with their patients, phrasing questions in an empathetic manner, and handing out resources tailored to individual needs.

The UI Office of the Vice President for Research and Economic Development funded the study.

Journal Reference:

Andrew C. High, Keli Ryan Steuber. An Examination of Support (In)Adequacy: Types, Sources, and Consequences of Social Support among Infertile Women. Communication Monographs, 2014; 81 (2): 157 DOI: 10.1080/03637751.2013.878868

University of Iowa. (2014, April 30). Infertile women want more support. ScienceDaily. Retrieved February 19, 2015 from http://www.sciencedaily.com/releases/2014/04/140430192529.htm

Scary, Dark, Tunnel of the Unknown

As soon as we started trying, I began to tell everyone. I knew it was risky, but I just couldn’t contain myself. I was so excited for this new journey and I never was one to hide my emotions. I have always worn my heart on my sleeve.

Months and months went by…I did everything right. I gave my body time to regulate after being on birth control (for basically all of my reproductive life); I tracked my ovulation using a kit. We even started using “fertility friendly” lube. But after just one month of trying and nothing…I had a bad feeling that something was not exactly right.

You see, I always did everything right when it came to my reproductive health; it’s in my blood. My mother is a nurse midwife and she knew about the minute I started having sex. She prescribed me my first birth control, how ever unethical that may have been. I took it on time, every single day since I was 16 years old. I got my yearly pap smears, I used protection and I got tested regularly. Because I liked sex and I wasn’t ashamed of it, but I was always acutely aware of the consequences it could bear. So, I was smart about it. It’s so funny; you spend your whole fucking life protecting yourself against it, then, when you decide the time is right, you expect it to be easy. But it doesn’t always work out that way.

I am now on month 6 of trying, which may not seem like all that much to some people. But, like I said, after the first month, I knew something wasn’t right. “At my age” (like my mother so delicately put it), “after 6 months of trying, you should go get checked out.” So like the reproductively responsible woman I am, at exactly 6 months, I went in the see MY midwife (not my mother, just in case you were worried). She did an exam…everything normal. She did blood tests…everything normal. She did a pelvic ultrasound…uh oh! “The endometrial echo complex demonstrates multiple tiny cystic structures, the largest one measures 6 x 3 x 3 mm, of uncertain etiology”. What the fuck does that mean?

At this point, we aren’t quite sure, but to me it feels like a death sentence (I am also not a melodramatic at all, just ask my husband). When I called to talk to my midwife about the results and what the next steps are, I had to leave a message. The midwife’s nursing assistant called back the next day and said “the midwife would really like you to come in and talk with her directly about your results”. Fuck me!

I have an appointment in a week. I am scared. Now, I don’t want to talk about it with anyone. It’s no longer an exciting new journey of trying to conceive our first child. It’s a scary, dark, tunnel of the unknown and I am not sure I want to see what is on the other side.

–Kate B.

Science Friday: Fracking correlated with reproductive harm?

Chemicals released during natural gas extraction may harm reproduction, development

Unconventional oil and gas (UOG) operations combine directional drilling and hydraulic fracturing, or “fracking,” to release natural gas from underground rock. Recent discussions have centered on potential air and water pollution from chemicals used in these processes and how it affects the more than 15 million Americans living within one mile of UOG operations. Now, Susan C. Nagel, a researcher with the University of Missouri, and national colleagues have conducted the largest review to date of research centered on fracking byproducts and their effects on human reproductive and developmental health. They determined that exposure to chemicals released in fracturing may be harmful to human health in men, women and children and recommend further scientific study.

“We examined more than 150 peer-reviewed studies reporting on the effects of chemicals used in UOG operations and found evidence to suggest there is cause for concern for human health,” said Nagel. “Further, we found that previous studies suggest that adult and early life exposure to chemicals associated with UOG operations can result in adverse reproductive health and developmental defects in humans.”

The “weight of evidence” review of scientific literature and peer-reviewed publications, where studies are examined thoroughly for patterns and links, included international studies that focused on UOG chemicals. Reviewers say these chemicals have been measured in air and water near UOG operations, and have been associated with harmful effects in both animals and humans.

The reviewers concluded that exposure to air and water pollution caused by UOG operations may be linked to health concerns including infertility, miscarriage, impaired fetal growth, birth defects and reduced semen quality.

“There are far fewer human studies than animal studies; however, taken together, the studies did show that humans can be harmed by these chemicals released from fracking,” Nagel said. “There is strong evidence of decreased semen quality in men, higher miscarriages in women and increased risk of birth defects in children. There is a striking need for continued research on UOG processes and chemicals and the health outcomes in people.”

Nagel, an associate professor of obstetrics, gynecology and women’s health in the School of Medicine, and adjunct associate professor of biological sciences in the College of Arts and Science at MU, conducted the review with colleagues from the University of Missouri as well as researchers at the Institute for Health and the Environment and the Center for Environmental Health.

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Story Source:

The above story is based on materials provided by University of Missouri-Columbia. Note: Materials may be edited for content and length.

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Journal Reference:

1. Ellen Webb, Sheila Bushkin-Bedient, Amanda Cheng, Christopher D. Kassotis, Victoria Balise, Susan C. Nagel. Developmental and reproductive effects of chemicals associated with unconventional oil and natural gas operations. Reviews on Environmental Health, 2014; 29 (4) DOI: 10.1515/reveh-2014-0057