News Roundup – April 15

A few stories that caught our eye this week. 

-Elizabeth

VETERANS: Murray Amendment to Cover Reproductive Services for Injured Veterans Passes Key Committee

“This amendment is about fulfilling our promise to the military families who we ask to sacrifice and serve our country on our behalf,” Senator Murray said. “I’m so proud to see Democrats and Republicans working together to move this forward, but I know this is just the first hurdle. I will be fighting to see this through to the end so this country can keep up its commitment to care for our veterans and their spouses who dream of having a family.”

 

More babies, fewer multiple births, are resulting from assisted reproduction

Los Angeles Times

Melissa Healy

“In 2014, between 22% and 31% of women undergoing infertility treatment were electing to have just a single embryo transferred, with women under 35 choosing that option at higher rates than women over 40. That rate of “elective single-embryo transfers,” however, remains much lower than physician groups have called for.”

Assisted reproduction is on the rise in the United States, resulting in the birth of 65,175 babies in 2014, says a new report. (Ken Hively / Los Angeles Times)

Assisted reproduction is on the rise in the United States, resulting in the birth of 65,175 babies in 2014, says a new report. (Ken Hively / Los Angeles Times)

 

 

 

 

 

 

 

 

Infertility issues take financial, emotional toll

The Tennessean

Hollie Deese

“We’re trying to find out about exactly how much all of this is going to cost,” she says. “I’m still paying on treatments that I did in 2010 with my ex-husband. We had to take out a loan for our treatment we did in November, and we’ll be paying on it for two years. We don’t want to put ourselves in a horrible financial situation.

“There are so many times that you just want to give up and say, ‘I’m done.’ Then, you think of the big picture, that you really want to be a parent, and you’ll do whatever it takes.”

Jessica Ray at her home in Gallatin. The 31-year-old Gallatin photographer still hopes to become a mom one day despite her infertility issues. (Photo: George Walker IV / The Tennessean)

Jessica Ray at her home in Gallatin. The 31-year-old Gallatin photographer still hopes to become a mom one day despite her infertility issues.
(Photo: George Walker IV / The Tennessean)

 

 

ART Roundup

Artwork is something that can help people during the healing process as they are dealing with infertility. It is a way for people to get their anger and frustration out and take control over something in their lives again. Below is some of the powerful and emotional artwork that we have posted throughout the weeks.

Fertility Tornado: By Kristin Phasavath. This fertility tornado is a representation of what it feels like when you are swept up in anything fertility related. This fertility nurse is surrounded by this tornado every day and painting this was a way for her to release her frustrations. After gong through fertility treatment herself, she hopes that this painting will help connect many of her fertility comrades.fertility-tornado_webMy Time’s Running Out: By Andrea Diamond. This work of art is really a mention of how infertility can make you feel, both on the inside and outside. Barbie, who is society’s representation of true feminine beauty is ageless, while we all change and grow. Andrea feels that as she grows older the decline of her internal organs is represented in her physical appearance as well. This Barbie doll was an outlet for Andrea’s anger as she went through secondary infertility.my time's running out.2jpg

Untitled: By Abigail Glass. Abigail was on her second round of IVF when she had an orientation for an adoption agency. It took 9 months before they brought their son from Guatemala home. This piece represents her story and about 100 needles used on her fertility journey, which happens to be a small amount compared to over the years.

Infertility Box: By Sarah Clark Davis. This box has been a massive comfort for Sarah over the years. It has say on her bureau for a long time to remind her not to let infertility take over her life. The inside of the box was a way for her to let out her rage over the fertility treatment process. The quote by Michael J. Fox has really spoken to her throughout her treatment and has stayed with her so she wanted to make it part of the box as well.infertility boxSon-flower: By Shaelene Clark. This painting is something Shaelene spent a lot of time and emotion trying to complete. The broken pot is a representation of how Shaelene feels, broken but still trying to hold itself together. Through her 8 years of infertility she has had multiple miscarriages, which is represented in the dying flowers. After many years of trying, she was finally able to get her beautiful son-flower and the triumph of having a child after a rough delivery.Son-flowerInconceivable: By Aine Quimby. Aine was in her mid-twenties when she was told she was infertile. Through fertility treatments and miscarriages her body felt completely vulnerable and exposed. She poured all of her isolation and grief into this painting. She has connected with many people over the years who have had similar experiences and that has helped her express her feelings with people who can better understand the struggles.Inconcievable

Myth – One round of IVF is all it takes to “beat” infertility. 

I was very reluctant to try IVF. Three and a half years into trying to conceive I had endured 5 rounds of Clomid and timed intercourse, 4 IUI hybrid cycles, a diagnostic laparoscopy, and six months of weekly therapy appointments to sort out how I felt about the prospect of using IVF to try to build my family. I had spent months doing research about the procedure, along with even more extensive research about adoption. After much consideration, my husband and I figured that IVF would be the cheapest, fastest, easiest path to parenthood, even though it isn’t any of those things. Assuming it worked.

One in eight couples in America have received a diagnosis of the disease of infertility. Like most Americans needing IVF, our health insurance wouldn’t cover the treatment. We’d have to pay out of pocket. Not only that, the emotional investment can be extremely expensive. We decided that, for us, the best plan would be to try one round of IVF, transfer any resulting embryos, and move on to other options.

I remember when I told my mother-in-law we had decided to give it a try. I was in the dollar aisle of a grocery store talking to her on my cell phone. “That’s good,” she replied. “We know IVF works.” However, while I appreciated her confidence and hoped that it WOULD work for us, I’d done the research and had insight that she didn’t have. Although IVF would give us the best odds we’d ever had of achieving a pregnancy, they were still against us. IVF working was definitely not a sure thing.

#IVFcrib

Crib with Medication Boxes by Elizabeth Walker. Mixed media with custom crib by Morgan Shores Woodworking.

As described in this December article from The New York Times, a study out of the University of Bristol and the University of Glasgow in the United Kingdom found that “nearly two-thirds of women undergoing I.V.F. will have a child by the sixth attempt, suggesting that persistence can pay off.”  The out of pocket costs for those cycles? As explained in this article about the same study, published by the Los Angeles Times, “a rough calculation (assuming two attempts at embryo transfer per cycle) would cost up to $132,000”.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

THIS is why it’s so important that we advocate for legislation that will help those with infertility build their families. Maria and I will be at Advocacy Day in Washington, D.C. on May 11th, fighting for this cause and we invite you to join us! It’s an amazing, empowering experience, and a place where incredible friendships are made. In fact, Maria and I met at Advocacy Day in 2014.

If you want to learn more, check out this link from RESOLVE: The National Infertility Association. Or feel free to contact us to chat about it at info@artofinfertility.org. If you can’t make the trip, check out this link to learn more about the federal legislation and for easy ways to contact your Senators and Members of Congress to show your support. Another easy way to make a difference is sharing messages about Advocacy Day on social media. You could share this video, for example. Together, we can raise awareness, busting the myth that one IVF treatment is all it takes, and working to improve the treatment coverage that will help those with infertility build their families.

Elizabeth

#IFadvocacy

Correlations of the Heart: Infertility and Congenital Heart Defects

Today’s guest post is from Mary. We met Mary last summer when she attended one of our writing workshops with Robin Silbergleid in East Lansing, MI. Mary shares a bit of her story of infertility and parenting children with congenital heart defect. There are images of children and parenting in this post, as well as references to loss. Thanks so much, Mary, for sharing your story with us!

Elizabeth

Correlations of the Heart: Infertility and Congenital Heart Defects

Whether you have just been diagnosed with infertility, or you have been dealing with it for quite some time, you know that it is often devastating and can test any relationship.  Whether it’s getting that positive pregnancy test, finding a gestational carrier, or finally making it to delivery after suffering multiple miscarriages, you have been through so much more than the average person by that point that you feel like the world owes you a healthy baby.  And, fortunately, the majority of people get just that.  Some of us don’t.  This is our story of what happened next, and why it matters to you.

Mary and her husband, Phil, blissfully unaware of infertility.

Mary and her husband, Phil, blissfully unaware of infertility.

Discovering I was infertile was heart-wrenching.  Once I found out why, it wasn’t too surprising—my appendix had ruptured when I was 20 and scarred my tubes closed.  It still gutted me, but I felt privileged to have a simple explanation because my diagnosis came a solution—in vitro fertilization (IVF).  We would just bypass the blockages and *poof* a baby should easily be ours.  We were lucky—we got pregnant on the first try with lots of embryos left over for siblings.  We were overjoyed.  Our daughter was born at 39 weeks and everything seemed fine.  Except for being a little blue initially, after an evening with some extra oxygen, she was good to go, and we took home our perfectly healthy baby.  It wasn’t until she was almost five months old that we learned there might be something wrong.  At six months, she was officially diagnosed with a complex congenital heart defect (CHD)—a missing left pulmonary artery, and a hole between her ventricles (or ventricular septal defect).

“You have been through so much more than the average person by that point that you feel like the world owes you a healthy baby.  And, fortunately, the majority of people get just that.  Some of us don’t.”

After navigating and surviving the world of open-heart surgery and the implications of a lifetime of medication for our daughter, we finally decided we were ready to try for another child.  Although the chance of another child with CHD was greater having already had one, the total chance was still small—something like 2.5%, up from 1%.  Our second round of IVF resulted in a miscarriage.  Our third round failed completely.  Finally, our fourth round gave us our third pregnancy.  We anxiously waited to see if we would have another miscarriage, but even with heavy bleeding early on, a few weeks of bed rest seemed to put us in the clear.  At 18 weeks, we elected to undergo a fetal echocardiogram to check out the baby’s heart.  The longer the examination took, the more worried we became.  Sure enough, the news was gut-wrenching.  Our little boy had a different, rarer, and more serious CHD than our daughter.  He ended up having open-heart surgery at seven days, and, although prognosis originally looked good, at four months or so, his growth stalled.  He bounced back and forth between the hospital and home with increasing frequency, and endured multiple gastrointestinal surgeries and a second open-heart surgery.  Sadly, he ultimately suffered heart failure and passed away shortly before he turned 11 months old.

Patrick after his second open-heart surgery.

Patrick after his second open-heart surgery.

After his death, we joined with other heart families to champion increased money and research for CHDs.  We were stunned with the statistics we learned.  Even though CHDs are the most common birth defect, affecting 1 in 110 children, and kill more children under the age of 1 than all forms of childhood cancer combined, there is little publicity and research funding.  The cause of most CHDs is unknown, and surgery is rarely a cure; more often it is a temporary fix.

As we share our story to help raise awareness of CHD and increase research and funding, we also feel obligated to share another piece of the puzzle.  There is a correlation, as yet not completely understood, between infertility and birth defects.  Some research indicates that utilizing assisted reproductive technologies (ART) increases the risk of having a child with birth defect, including CHDs.  See, e.g., http://www.medicalnewstoday.com/articles/251768.php (Last accessed February 15, 2016).  Other research suggests that this increase is related to the increased frequency of higher order multiple births in the IVF population and not the use of IVF itself.  See, e.g., http://www.ncbi.nlm.nih.gov/pubmed/20498466 (Last accessed February 15, 2016).  Still other research suggests that the cause of the birth defects is related to factors that cause infertility.  That is, infertile couples who ultimately conceive naturally have the same increased risk for birth defects as those who use ART.  See, e.g., http://blogs.nature.com/news/2012/05/in-vitro-fertilization-off-the-hook-for-causing-birth-defects.html (Last accessed February 15, 2016).

CHD-FactsThis is not to scare you away from trying to conceive—whether naturally or using ART.  The chance of having a child with a birth defect is still very small.  But, you should be aware that it can happen.  Infertility is hard on a relationship.  Having a medically needy child is an added degree of stress and difficulty as well.  Experiencing one after the other exponentially increases chances of divorce.  But knowledge is power.  Forewarned is forearmed.  Going into the process with your eyes wide open puts you in the best position to survive as a couple whatever lies ahead of you, be it natural conception, surrogacy, adoption, IVF, childlessness, multiples, a medically needy child, a healthy child, or any combination thereof.  In the end, my hope for you is the same as it is for myself—no matter your struggles, no matter your circumstances, no matter your final destination, may you find happiness and joy.

Recent-Family-pic

If you would like to read our complete infertility and CHD journey, you can find them at irreverentviewoffertility.blogspot.com and fixingpatricksheart.com.

Twenty-something and Dealing with Infertility

It’s a common misconception that infertility is only a problem for those who wait too long to try to conceive. Today, we’re sharing portions of just a few of the many stories we’ve collected from those diagnosed with the disease in their 20s. This post does contain an image of babies/parenting.

– Elizabeth

 Natalie and Stephan 

Natalie and Stephan focus their energy on putting puzzles together as a way to keep infertility off their minds.

Natalie and Stephan focus their energy on putting puzzles together as a way to keep infertility off their minds.

What are some of the best ways people supported you during your journey?  One of the most memorable ways people helped support us was fundraising for IVF. We set up one of those health donation websites and had a garage sale. Family members and friends had bake sales, everyone donated items for the garage sale, and even coworkers from family members helped out. It was really really humbling and brought us to tears once to see all the support we were getting.

What is the biggest lesson you learned throughout the journey?

Natalie: “The big ticket question. I think this is what I struggle most with. Figuring out why this is happening, or what I can learn from all of this. Patience definitely, though, I can’t say that is currently my strong suit these days. Over all, I think trying to ‘live in the moment,’ is a big take away. It’s so easy to get swept into ‘what’s next?’ or ‘what should I have done?’ that I lose the now.  I also think I’m gaining perseverance.

Stephan: “I think learning to be more pragmatic is the biggest takeaway from this journey.  I was so expectant with the initial IVF cycle because so much time and money was invested in it that I think we were both extremely disappointed when it wasn’t successful.  Learning to live within the facts and to not speculate has helped save me the disappointment.”

“I felt alone and ashamed to have to go through this at what was then 24.”

Audrey and Chas

Audrey-and-Chas

Audrey: “One of our biggest challenges was Chas’s anger for not being able to expand our family naturally. During an argument he told me that the reason he was really upset was because we have 2 empty rooms upstairs (we bought a 4 bedroom house in the hopes that they would be filled shortly after we purchased.) I felt alone and ashamed to have to go through this at what was then 24.”

Chas: “This infertility journey is mostly my fault. Not exactly my fault but I’m the one with something wrong. It’s kind of been hard to take. I’ve had my good moments and my bad moments. I’ve had moments where I’ve just blown up and said I can’t do this anymore. Big, huge blow outs. It’s hard when you feel like it’s your fault. I dealt with it on individual terms instead of more of a team effort. When I finally embraced that team effort, everything got a lot better. Although, I still have my days. You just have to go in as a team.”

“The advice I would give to someone who has just been diagnosed with infertility would be, realize it isn’t anyone’s fault. Also, don’t hold it in. Talk to your true friends and let them know that this isn’t something that can just be ‘relaxed’ away, or something you can ‘try harder’ at, this is a real medical problem.”

 

Megan and Jeremy

megan-and-jeremy

Megan: “Through my testing, we found I had a heart shaped uterus, hypothyroidism, PCOS tendencies(but no official change in the labs to get the official PCOS diagnosis), MTHFR, elevated NK cells and cytokines, and blood clotting tendencies/antiphospholipid antibody syndrome that impaired bloodflow to my ovaries and uterus.”

“My RE told me that if my labwork didn’t improve in my next cycle (my FSH just came back extremely elevated while we were planning our 3rd IVF cycle for 2 months later), he wouldn’t let me use my own eggs anymore.  At 28 years old, I took that news really hard.”

“Prior to the IF process, I was completely phobic of needles and there was no way I’d give myself shots.  With the exception of the PIO shots, I gave myself my shots and had IV infusions every 2-4 weeks to prevent my immune system from attacking the babies.  I’d sometimes have to be stuck up to 6 times a day depending on lab work and how easily they’d get the IV.  My desire to have a baby far surpassed my fears.  What other choice did I have? It all seemed small in comparison to not having children.”

 

Infertility Greeting Cards: Hope and Comfort via the Mailbox

This is a guest blog post written by Kristy Koser who is a Licensed Professional (Clinical) Counselor. After trying nine rounds of IVF with no luck, Kristy decided to channel her frustrations into Trying to Conceive Greeting Cards in order to help herself, and others, find the right words to say. You can follow Kristy on Instagram at @ttcgreetingcards or find her work on Etsy

As with most things in life, we have an expectation of what’s to come, at least an idea of where we imagine our life to be. I accomplished most of my personal and career goals by my late 20s, with two degrees, a thriving private practice as a couples therapist, several publications, a house, two cats, all while being married to my best friend. When it came time to think about children, I assumed starting a family would be within reach just like all the other challenging, but doable things I tackled in the years past. Much to my surprise, having children or should I say “making” children was and is much harder than we ever dreamed of. After nine rounds of IVF (and loads of medicated and IUI cycles before that), we are still in the midst of wondering what’s next, and will this ever work?  We wonder if we are legitimately going insane for continuing to embark in yet another IVF round? Could this be it? Will this be it? The conundrum with IVF is that often there is always some lingering, hope, maybe it’s possibility or curiosity, whatever you want to call it, at the end of each failed round–tempting you and your doctors to tweak something and try again. Maybe now, we finally have the magic mix of suppression, estrogen, uterine receptivity and progesterone that will miraculous allow that embryo to implant. The key word here is “maybe,” a five letter word that holds all the hope and optimism. It propels you into thinking just one more injection, pill, retrieval, patch, or transfer will be it. I think we all need those “maybes” in life, it keeps us motivated, curious about what’s to come. Somehow the “maybe” brings forth hope that would otherwise get lost in the fear and the unknown.

I’ve spent years of life in the “maybes” in the hope that something new will finally emerge. I’ve fought off doubt, grief, jealously, and fear of the unknown, hoping that somewhere underneath it all I’ll find that “something” to renew my heart to try again. Infertility challenges you to face feelings on so many levels it’s often to hard to process them from day to day and depending what medication you’re on, really it’s more like hour to hour. I’ve been swallowed up in emotion and have felt paralyzed at times, not knowing how to feel or even wanting to reach out. I knew living in the black hole of infertility was not going to cure my sadness or anger, it was instead going to propel me farther from the things that really matter.

So, after sitting with all that uncertainty for years on end I decided to do something with it. I often heard friends and family say “I just don’t have the right words” or “I wish I knew what to say” as we would announce another failed cycle or another early pregnancy loss. This led me to create TTC (trying to conceive) Greeting Cards, which specifically supports those struggling through infertility. They highlight the unique struggles, medical procedures, and feelings that are often associated with infertility. They are meant to provide encouragement, hope, and comfort–just the right words for people who don’t know what to say. Creating these cards was also a way for me to process my grief from the last three years. Knowing these cards were going to be filled with love and encouragement, arriving to someone’s mailbox on one of those dark-doubt-filled days, made me feel less alone in this battle. I felt like I was doing something with all this pain and heartache. I also loved the idea of encouraging and supporting other couples going through this. It’s easy at the beginning to think you can manage infertility quietly or without help, but what soon becomes apparent is the need for others along the way. On social media (Instagram) I often share tips that I’ve learned over the last nine IVF rounds to staying positive, focused and organized through this process. I’ve even created a “cycle calendar” that people can print off at home to help organize medication, appointments, lab results, and other procedures that can often feel overwhelming. Mapping it all out and if you are really ambitious even color coding it can help to ease the panic when trying to remember numerous medications in one day. I’ve often found keeping each calendar in a special folder is helpful to compare your medication and lab results from one cycle to the next. For example, you are able to anticipate how quickly your estrogen may rise or how slowly a follicle may grow. This can help you feel more in control and be a good reminder to wait patiently on your body to show you what it’s capable to doing.

jesus

Just one of the many “trying to conceive” cards that Kristy has created.

Over the last six months I’ve created cards that highlight things like egg retrieval and the excitement of embryo transfers. I’ve also created a line of thank-you cards for the nurses, doctors and embryologists who have provided such exceptional care during your most delicate moments. These have been quite a hit with doctors and embryologists around the country.

hormones

Kristy’s card apologizing for the whirlwind of hormones while trying to conceive.

I’ve most recently created a line of cards for couples to intentionally stay connected during the struggles of infertility. So often one partner feels at fault for the failed treatment or worse a partner can feel left out of the process. As I experienced both of those at times in my own marriage, I was reminded how important it is for all couples to stay in conversation along the way. As a couples therapist, I’m always looking out for ways couples can improve their relational bond and infertility has an immense power to create very wounding trauma that can impact fertility treatment, our body’s ability to cope with the various medical procedures, and our overall emotional health. It’s usually our partner who sees us day-in and day-out, going to our appointments, injecting mass amounts of hormones, sticking things up all kinds of places, and is left with whatever capacity we have left to be a good partner (which is usually very limited, sharp, sarcastic, or constantly hungry).

babyishard

A card created by Kristy that helps couples to stay connected through the struggle of infertility.

Next week I’ll be launching a “lucky” socks collection that has been highly suggested by customers. I’ll be introducing various designs to keep your feet nice and cozy during the often cold and sometimes sterile appointments, egg retrievals, embryo transfers, and of course the dreaded two week wait. I love knowing women can look down at their feet and be reminded “I can do this” or feel empowered to stay focused and positive when the doubt creeps in. Also in the shop are “lucky” tees that women can wear at any point in the infertility process to feel supported and motivated to make each day, appointment, medication, and dollar, matter.

My hope in creating these cards and gifts is to help couples, families, and friends start to speak about the pain of infertility and in turn feel empowered to comfort and support their loved ones–with just the right words. So, if you are needing the right words to say to a friend or family member–or if you are needing a little encouragement yourself, consider sending some love through the mailbox. I mean, who doesn’t love snail mail?

A big hug to all those trying to conceive today, tomorrow, and in the years to come. You are not forgotten, friend. You can do hard things.

Kristy Koser, is a Licensed Professional (Clinical) Counselor in Virginia and Ohio and a Emotional Focused Couples Therapist and Supervisor. She specializes in couples therapy, family business consulting, and attachment related dynamics. Outside of her professional life, she’s a sucker for Netflix, flash mobs, and a good piece of cheese. You can reach Kristy for speaking, media or press inquiries at ttcgreetingcards@gmail.com.

From Infertility to Fatherhood – My Journey So Far

This week’s blog is a guest post by Fred Harlan. We want to disclose a trigger warning, which is something we will do from here on out when we feel it’s needed, that this post does include images of a baby and of parenting. Fred and his wife Andrea are ART of Infertility project participants who we met in Southern California. They shared their story with us via an interview and also attended our pop-up art exhibit and workshops in Calabasas during National Infertility Awareness Week this year. Thanks, Fred, for sharing your family’s story!

From Infertility to Fatherhood – My Journey So Far

I am going to tell you something that I always hated to hear. At least, I used to at a point in time in my life. My wife and I were far along down that lonely path we were traveling in the midst of our infertility journey. The meandering road had become increasingly dark and dank. It was becoming more apparent that the chances of a successful IVF cycle using my wife’s eggs and my sperm was unlikely. Some people in our lives would say the obvious thought to them, and insensitive comment to us, that we could “always adopt.” Even the medical and therapeutic people that we sought out had begun to talk to us about “other options” to parenthood. I simply wasn’t ready to hear it, let alone think about it.

As time passed reality crept in. After many failed procedures, buckets of tears and a ton of soul searching, my wife and I eventually came to the realization that some how, some way, we really wanted to have a child. In order to make that happen we slowly began to look into other possible options. Now, after eight plus years of infertility and 10 months of fatherhood what I want to tell you is this: regardless of how long you have been battling or the reasons for your infertility, that if you are resolved in your desire to have a child no matter what, my message of hope is that there is a way. It may not be the way to parenthood that you envisioned but there are paths that can take you there. Not all roads are available to everyone for various reasons – emotional, cultural, religious or financial. But I know there is a potential path(s) available to everyone. You just have to be in a place along your own journey to be open to consider other possibilities.

fred_andrea_motorcycle_9547

Fred and Andrea during their ART of IF photo session.

Ten months ago my son, Gehrig, came into our lives. He was born of my wife’s womb, my sperm and a donor’s egg. Being his father is a joy that is incomparable to any other, a reality that I still almost cannot believe and an opportunity, considering the circumstances, which I long thought I never would consider. Like I was saying, my wife and I decided that parenthood was what we definitely wanted. However, with each failed IVF cycle the medical opinion increasing appeared evident that the quality of my wife’s eggs was our challenge. Knowing my wife’s heartache and my wanting to always tackle infertility as a team, I suggested to my wife that our future child should be either “both of ours or neither of ours” genetically.  Honestly, I couldn’t imagine how I would feel had the circumstances been that of our future child being biologically hers and not mine, so I didn’t want her to have to imagine it either.

Egg donation seemed so unnatural, so complicated and so not us. We didn’t want to be “one of those couples.” Besides, there were so many questions that came along with egg donation. Would my wife be able to completely accept and love a child that was not biologically her own? Would the donor want to be a part of his and our life? What if he doesn’t look like us, and then what would we say when asked, “whom does he look like?” What would we tell family and friends? And what if years down the road our son had a health issue and would benefit from knowing detailed medical history? And the really big question: what would we tell our son? Although we knew several people who had chosen the egg donor route and were very happy with their choice, it just didn’t feel like the right option for us. So we closed the door on this alternative and proceeded in educating ourselves on the different avenues of adoption, including that of embryo adoption. During this time my wife realized that the concept of being pregnant and carrying a child was extremely important to her, especially considering her doctors believed she would be able to carry a child. So it appeared that embryo adoption was the answer that life was steering us toward. At least that is what we thought until a comedy of errors (a story for another day) resulted in my wife’s sister volunteering to be a surrogate or give us her eggs or whatever we needed, led us to think about egg donation one more time. It was during this period that I realized that having a child who was biologically mine was more important than I had allowed myself to think. Another series of events led us to our eventual donor (another story for another day) and the rest as they say is history.

Looking back on everything we went through I have one more thing to say that someone struggling with infertility may not want to hear either, and I understand why – I was in your shoes. But now I need to say it, I have to say it, because it is my truth. I would not change a thing. At least not if it meant I wouldn’t have Gehrig today. If you told me ten years ago, “Fred, I have good news for you and I have bad news. The bad news is that you are going to go to hell and back again and again and again in your attempt to become a father. You are going to doubt yourself as a man, a person and as a husband. You and your wife are going to go through heartbreak after heartache, and you are going to have to be the rock that supports your wife all while you can barely stand on your own. You will doubt your dreams, your wife, your faith and life itself. You will sit in the depths of despair that appear to have no escape, no hope and no resolve. However, at the end you will be given an amazing little boy to love!” Knowing everything that I know today, I would sign up for that in a New York minute.

We have all heard some variation of the motivational phrase, “Life is not a destination, it’s a journey.” I always wanted to believe that was true but some how never found a way to make it work in my life. Stress and frustration seemed to win out more than I would have liked. Then one afternoon, after my wife and I participated in a vision board workshop – an activity hosted and encouraged by our infertility counselor – in order to assist us in visualizing the life for which we hoped, I realized my board was not complete. I had one picture with a saying to represent my life’s journey that simply was not ringing true for me. In fact, it was pretty lame. So decided to scour the Internet for an image that would adequately represent my life’s road. Beaches speak to me and as I scanned many coastal images I came across one. As soon as I saw it I know my vision board was complete. It was the picture of foam-crested waves gently meeting the sand in which were inscribed the following words: “The journey is the reward.” That rephrasing of all those old Successories/Sky Mall posters spoke to me differently somehow. I didn’t know it exactly at the time, but now I do. And as I look at that photo posted on my desk as I type, I can say that my journey is indeed my reward.

Fred shares a vision board that his wife, Andrea, made during their journey at the ART of IF pop up exhibit and workshops in Calabasas, CA during National Infertility Awareness Week in 2015. Photo by Chrystal Starr Photography.

Fred shares a vision board that his wife, Andrea, made during their journey at the ART of IF pop up exhibit and workshops in Calabasas, CA during National Infertility Awareness Week in 2015. Photo by Chrystal Starr Photography.

I often speak about infertility as a journey. Each couple, each person who is faced with the disease goes through similar experiences and yet at the same time a journey all her or his own. I did not realize it as I was going through it – how could I, it was just too emotional, too raw – but in retrospect, I realize that I was being prepared for what life had in store for me – not just to be a father, but to be a father to this little boy, here and now. I have always wanted to be a dad, and had I become one earlier in life I’m sure that I would have relished it and been a good one. However, becoming a parent at this point in my life I know that I am so much better prepared for fatherhood than I would have as a younger man. I am more grounded, more secure emotionally and less anxious. I am not missing as much time with Gehrig as I am sure that I would have years ago while building a previous business. I am home more and with Gehrig frequently despite building a new practice. I’m often the lone dad in the “Mommy and Me” new parent classes.

The dad I am today is not solely because of the length of time it took to become one, but also as a direct result from my infertility journey. For example, I am more patient and flexible than I used to be. This is a benefit to Gehrig but also to Andrea as we parent him together. Also, the perfectionist that I am has been able to let go of having to do things in a specific “right” way and being tied to specific outcomes. When Gehrig didn’t nurse right away I didn’t panic (don’t ask me about my wife), rather we sought help. He turned into a nursing machine. When Gehrig didn’t crawl when he should have we enjoyed what he was doing (rolling everywhere) and asked for advice. Now Gehrig is on the move. Had I been a parent years ago I would have been looking at the situation thinking: “what is wrong with my kid!”

Once we found out that Andrea’s pregnancy was viable I made up my mind that I would “take it all” – I would change every dirty diaper, listen to every cry, dry every tear and wipe up every spit up with a smile on my face. I laugh when I fly Gehrig over my head like Superman and he drools on my shirt, my glasses or even my mouth. I do not care. No, that is not true – actually I care a lot, in fact I love it. He is my son and I waited too long and tried too hard to have him to not enjoy every moment. And I have learned that some of the best moments are the simplest, such as at the end of the day when I am rocking him to sleep. His head lays on my shoulder and has he surrenders to sleep his neck gives way to the weight of his head which nestles into the nape of my neck. I continue to rock him for another ten minutes or so to ensure he is asleep, but mostly because that time is priceless to me. Each and every night I think to myself how life prepared me those moments, and I’m so grateful that I’m not missing a second of it by simply hurrying to get my son to bed.

Fred, Gehrig, and Andrea during their ART of IF photo session.

Fred, Gehrig, and Andrea during their ART of IF photo session.

 

You may be saying, “well, that is great for you Fred, you are one of the lucky ones, you were able to have a biological child. What about your wife? What about all the people who are not able to have a biological child?” My response is this: those are fair questions and it is reasonable to ask them. It is important to note that during the process of choosing egg donation, I grieved significantly for the child that I always thought Andrea and I would have together. In the end perhaps I am lucky – I am definitely fortunate – or perhaps we made our own luck to opening ourselves up to other possibilities to parenthood. This is not a commercial for egg donation or parenthood, rather it is intended to inspire hope in infertile couples who have definitely decided or are at least thinking they still want to be parents some how, some way. And as for my wife, she feels pretty fortunate herself. She will tell you, what I will tell you, that Gehrig is 100% hers. She carried him in her womb, feeds him from her breast and is a completely devoted mother in raising him and that is what is important to her. Likewise, I know many people who have adopted newborns, babies, children and even embryos, and all without fail will tell you that their child is indeed their child and was from the moment that child entered their lives. At the end of the day it is the emotional bond that matters, not the means by which the child arrived in your life.

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I wholeheartedly believe that Andrea and I were meant to be parents, and once we figured out that part, life opened new opportunities for us to become so. I also believe that my son was meant to be and meant to be in our lives at this moment in time. He didn’t come to us the way we thought he would, but that no longer is a concern. Years ago it was difficult to think about, let alone see, that life’s journey was preparing me, actually all three of us, not for the live we envisioned, but the life we were meant to live.1 That’s my journey – so far.

1A variation of a quote by Joseph Campbell.

Fred Harlan, MA2 is a resourceful Marriage and Family Therapist Intern who works with couples and individuals on relationship issues, and men and couples coping with infertility (theirs or their partner’s). Fred holds Master’s Degrees in Clinical Psychology and Speech Communication. Fred@FredHarlan.net.

My Infertility Wardrobe – Reflections from Elizabeth

My mother once told me that she was so excited when she was pregnant with me, in part, because it meant she got to buy new clothes. Her budget for clothing was tight but a changing body meant she’d have no choice but to expand her wardrobe. My relationship with clothing and fertility has been a little more complicated.

I knew, long before I started trying to conceive, or received my diagnosis of Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve, that when I got pregnant, I was going to show off my growing belly. No flowing tops with empire-waists for me! I was going to wear form fitting dresses, showing off every curve.

Once I went off birth control, I was reluctant to buy new clothes. It was only a matter of time before I wouldn’t be able to fit into them, right? I needed to save my money for trips to Motherhood Maternity and shopping A Pea in the Pod, and the maternity line of stores like GAP online.

Months turned to years and my clothes were getting tattered and faded. It was a stand off of sorts. I refused to give in and buy something new. Eventually, just after beginning a treatment course of inter-uterine inseminations with a hybrid of oral and injectable hormones, I needed a new winter coat.

My mother-in-law, Beverly, and I took a trip to TJ Maxx on a Saturday afternoon. I picked out two. One was Calvin Klein. Long, black, full of down, with faux fur framing my face on the detachable hood. The other, an Anne Klein of bright red wool. Beverly, an excellent shopping partner because of her excitability over a fantastic find, gushed about how cute it was and asked, “Oh! Don’t you hope you don’t get pregnant right away so you can wear it a little while?”

I didn’t care. The coat would fit after my pregnancy, or it wouldn’t, but at least I’d have a baby in my arms.

In the red coat, surrounded by children on a hay ride on our friends' family farm.

In the red coat, surrounded by children on a hay ride on our friends’ family farm.

Around that time, I decided to readjust my perspective and started using clothes as my consolation prize for not being pregnant each month. With the arrival of each new cycle, the sure sign that treatment had once again been unsuccessful and the prospect of having to buy maternity clothes was delayed for another month, I would head off to the Limited, or scour the racks at Marshall’s after appointments with the reproductive endocrinologist. I bought sweaters, camisoles, tops, but never bottoms, still holding on to the possibility that it wouldn’t be long before I was pregnant and I would have difficulty zipping and buttoning them.

My dresser drawers started overflowing and I had no choice but to start moving clothes into the dresser in the guest room that was supposed to become a nursery.

At Advocacy Day in 2014 wearing clothes purchased specifically for the occasion.

At Advocacy Day in 2014 wearing clothes purchased specifically for the occasion.

In March of 2013, we moved on to IVF. I had originally hoped to do it in February, just before 35th birthday. I liked the idea of using 34 year-old eggs to create my embryos. Everyone knows things go downhill after 35, right? Unfortunately, since I now live in the world of infertility, I know that things can go downhill at any age.

Our IVF cycle resulted in three, grade 5AA blastocysts. They were high quality, hatched, and ready to implant and become my children. They were beautiful. We transferred two in May and waited to find out if they’d implanted meaning that I was finally, after four years of dealing with infertility, pregnant.

On the night before my beta, after we’d had dinner and I’d taken the dog for a walk, I tested. I seriously wasn’t expecting anything. The words, “It’s negative” were already coming out of my mouth when I realize it wasn’t. Positive. The line wasn’t very dark but it was there. My husband and I were all smiles and I made some comment about being his pregnant wife. Still, we were cautiously optimistic. We knew the blood test the next day would give us a better indication of what to expect.

The next morning, I saw a rainbow on my way to have my blood drawn. That had to be a good sign. The nurse called with my numbers a bit later. At 30, they weren’t where I wanted to be but I was indeed pregnant.  Suddenly, I didn’t hate the pregnant women I passed in the hall at work. I was one of them. It was exciting but also a complete identity crisis. I was fully immersed in the infertility world at that point and the thought of switching gears and becoming a parent were daunting. Still, I smiled when I thought of raising my child alongside my best friend’s daughter who would be just a bit older. Summers at the lake, sleepovers. After years of being left behind by friends as they moved into parenthood, I’d finally be moving forward and joining them.

On the day of beta number two, my mom and I were shopping in Metro Detroit. I needed some summer clothes and took care to choose items that, as my mother-in-law had said about the red coat, I’d be able to wear a little while. At Nordstrom, I fell in love with a light-weight tweed skirt that, unfortunately for me, a newly pregnant woman, fit perfectly. There was no give, meaning it wouldn’t fit long enough to make it to the “yes” hook in my fitting room.

I paid for my items, we had some lunch, and made our way to an antique store. It was in the parking lot there that I got the news. My beta had gone down. The pregnancy was not viable. I emailed my husband the message, “No more shots.”

I thought I could hold it together but I couldn’t, we hit the highway to head back to the hotel. All I could think was, “I should have bought the skirt”, like doing so would have guaranteed that my pregnancy would have continued. For a moment I panicked and my mom and I considered turning around and going back to Nordstrom. We didn’t.

With my husband on our "IVF didn't work so we're taking a vacation" trip. I bought the hat at the resort gift shop after forgetting mine at home.

With my husband on our “IVF didn’t work so we’re taking a vacation” trip. I bought the hat at the resort gift shop after forgetting mine at home.

After my early miscarriage, that skirt haunted me. I looked for it on repeat trips to the mall and it wasn’t there. Months passed and my husband, Beverly, and I were visiting my nieces in Minnesota for their birthdays. We’d been at the Mall of America for hours with a trip to the aquarium, amusement park, the movie theater, and more. The girls were anxious to get back to the hotel to play with their new birthday toys but I wanted to try to take advantage of Minnesota’s tax-free clothing. I said good bye and I’ll see you soon as the rest of my family boarded the elevator to find the shuttle back to our room. I didn’t have much time, but I headed into Nordstrom Rack.

There it was. The skirt. I needed some closure. I took it to the fitting room, this skirt that I hadn’t been able to get out of my mind since the day of my miscarriage. The skirt that I passed up because I was pregnant, then wasn’t. My heart was racing as I put it on and zipped it up. I looked at myself in the mirror and was surprised to see that it wasn’t as fantastic as I had remembered. Relief rushed over me.

Since then, we unsuccessfully transferred our last embryo. We’ve moved on to trying to regroup. To find ourselves after more than half a decade of the turmoil that comes along with an infertility diagnosis. In addition to regular therapy, I’ve indulged in a little too much retail therapy.  My recent splurge (a great deal at Nordstrom Rack, yet still not cheap), a Burberry dress. Not because it’s Burberry but because the fabric feels amazing and it’s in a style that I’ve always wanted, but I’ve never before been able to find in proportions that fit me right. It’s hanging in my closet, with the tags still on. I go back and forth between thinking I should return it and imagining myself wearing it to present about the ART of Infertility at an upcoming medical humanities conference.

The Burberry dress. It's nowhere near that short on me!

The Burberry dress. It’s nowhere near that short on me!

Click here to vote on whether I should return or keep the dress.

I’m not yet sure if my journey will take me to a life living child free or to parenthood. I imagine both scenarios and there’s a wardrobe that goes along with each. In one, there’s shopping without the worry of my newly purchased pants suddenly not fitting, neatly folding clothes and then doing my best to cram them into already over-filled suitcases for more travel with ART of IF, carefully chosen outfits for business meetings, a variety of shoes, belts, and jewelry for accessorizing.

In the other, there are also the shoulders of my sweaters soaked with baby drool, the hem of my skirt being tugged by the tiny hand of a son or daughter, urging my attention to his or her level. There’s me in the stands at a ball game in the rain, wearing a wind resistant parka and, eventually, a trip to a boutique to purchase a mother-of-the-bride, or groom, dress.

I don’t imagine that one wardrobe is better than the other. I believe I can be happy wearing either one. But will one make me happier? Feel more fulfilled? More at peace? I’m not sure yet. So, I’ll take this time to work on re-weaving the fabric of my life that’s been worn thin over the past six and a half years, hoping that I’ll eventually know how to cut it up and stitch it back together into something beautiful and new.

Angela’s Advocacy Day Interview

Maria and I had the pleasure of documenting a bit of Angela’s story when we were in Washington, D.C. last month. Angela did multiple rounds of IVF with both her own eggs and donor eggs before adopting her son domestically. Thanks, Angela, for sharing your story with us so others will know they are not alone!

Elizabeth

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Angela talks about her experience with open adoption and the frequency with which she has contact with her son’s birth mother.

For more information on adoption, the Creating a Family website is a great resource. They even have a radio show that can how information on the different types of adoption and how to decide which one is right for you and this quick comparison chart on the different types of adoption.

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Angela is a RESOLVE: The National Infertility Association Ambassador and a peer-led support group host. You can play the audio clip to hear about how Angela got involved with the organization. (She references Redbook’s Truth About Trying campaign in this clip. You can check out some of the videos from the campaign at this link but will have to scroll to the bottom to find them.)

Click on this link to find a RESOLVE support group near you. If there isn’t one in your area, you can email info@resolve.org to talk to someone about starting one. There’s no substitute for in person, “real life” groups and the support they provide. It was through a RESOLVE support group that I became comfortable with my diagnosis, sharing my story, and ultimately wanting to do infertility advocacy, resulting in ART of Infertility!

Art Journaling to Cope with Infertility

I was very fortunate to wake up this morning in our nation’s capitol, where I will be advocating for legislation to help those with infertility. Sara Elliot, our guest blogger this week, was hoping to make the trip this year and was unable, but wanted to share her story with us via the ART of IF blog. Thank you, Sara for sharing your story with us!

Elizabeth

Art Journaling to Cope with Infertility

Many in the infertility community will be making their way to DC this week for Resolve’s Advocacy Day on Capitol Hill.

I can’t be there to advocate this year in person, but I still I wanted to help raise awareness about the 1 out of 8 couples who month-after-month, year-after-year are trying to build their family by any route available to them.

imageLet’s start with this. I never thought that I’d be a person who would “do” IVF. It’s taken a long time to come to terms with the loss of control over my body and my reproduction. With a diagnosis of PCOS and subclinical hypothyroidism, I am now both infertile – meaning we tried to get pregnant for over a year without assistance – and have experienced recurrent pregnancy loss. The combination is so difficult.

Around the time I first went to on OB/GYN to get testing, I found out that it took my grandparents 7 years to conceive my mother, so there is likely a genetic component to what I am going through. I remember my grandma saying, “Our children came along later” but I didn’t understand infertility might be the cause until I was faced with it myself.

For reasons we’re still trying to figure out with our doctor, we’ve conceived four times through assisted reproductive technology – 2 IUIS and 2 IVF cycles – and lost all 4 pregnancies. One was ectopic. One had a heartbeat we got to hear twice.

While going through this recent IVF cycle and loss, I turned to art journaling to process the emotions of this heart wrenching experience. I made a point to draw just a little bit every day, even if all I could muster was a few words in black pen. I’d often fill in the color on better days.

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The art journal is a record of what kept me going, including song lyrics and reminders to take care of myself.

At the start of the New Year, I pick a new word to focus on. This year the word I chose was “Become.” This song by Iron & Wine got stuck in my head for weeks, so “Become the rising sun” has become a phrase I focus on a lot.

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When we got an unexpected positive pregnancy test in February, I tried to remember to be happy in the moment. I was very anxious, given our history of loss. During this cycle, I saw the trailer for the documentary One More Shot by Noah Moskin and Maya Grobel Moskin. When Maya said, “In this moment, I am happy” I sobbed realizing how hard and necessary it is to grab a moment of happiness amidst all the bad news.

Fear of loss is a very typical response for women who have been through so much to get pregnant. Many infertile women talk quietly about the post-traumatic stress they experience. In the end, the only choice is to surrender, continue to persevere, and to figure out how to rebuild a life that includes more than just a few moments of happiness.

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In 2010, my husband and I moved back to our home state of Michigan to be near family as we tried to have children. As the years of trying to conceive and maintain a pregnancy unfolded, an added heartbreak was that if we’d stayed in Massachusetts, our IVF health care costs would have been covered by insurance because state law in Massachusetts mandates coverage for IVF. Michigan law does not. Federal law does not. Money that we’d intended for a retirement account or a child’s college fund was instead spent on medical bills that were uncovered by our health insurance.

And let’s be clear – female and male sterilization is covered by our insurance plan, yet the most effective treatment for infertility, IVF, is not covered. As far as I can tell, the only logic for this policy is cost savings for the insurance companies. No working reproductive systems means no babies which means no hospital births and no well-baby visits to pay for on family insurance plans.

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Despite all of our bad luck, we are lucky that we have some savings to spend on our health care needs. Many couples do not. And frankly, no one should have to spend five figures out of pocket to treat a diagnosed medical condition.

Only laws can change this situation.

Thank you to the women and men who are in DC advocating on our behalf this week.