Thursday, August 21, 2014

ARTiculating Compassionate Care: For O.B.

I have wanted to talk about what I do for a living on my blog, as it has come to be a main avenue toward helping me cope with my infertility and losses. I am a professor of interpersonal and family communication. In part my job involves research, which includes conducting research studies and writing research articles. In this post I would like to share the story of how I came to the idea for the first study I conducted on infertility. I will also share the article that is being published—a different type of art than I have typically shared on my blog.

In the fall of 2010 I was grieving the loss of our first baby O.B. to miscarriage. I was devastated and desperate to find a way toward redemption in the face of O.B.’s death. As a researcher interested in how people communicate in the face of difficulty, I became fascinated with the way I was treated during my infertility care. As a patient I was mortified by this treatment. And so began my quest to do something positive in O.B.’s name and to help myself heal at the same time. In this first study, I investigated compassionate care.

I admit that my interest in this topic has to do with the lack of compassion I have experienced during my own treatment. I have been wanting to share some of my horror stories for a long time but haven’t done so in defense of those who, despite their lack of compassion, are still a part of my journey, still the people who helped me bring my daughter home. Despite what they have done to injure my identity and esteem, I slowly have come to realize that much of the reason for their mis-care isn’t because they are bad people, but because they function in a system that places a number of roadblocks between themselves and patients. Among others, these include a privileging of quick patient turnaround, lack of insurance coverage for infertility care, and the absence of training that teaches providers how to communicate with patients in caring and compassionate ways. So I share some of my worst treatment experiences here not as a means of defaming my providers, but rather as a means of calling attention to a system that is in severe need of restructuring. I like to think that O.B.’s research study on compassion was a small step forward addressing this need.

The very first infertility appointment I ever had was a doozy. I made an appointment with my OB/GYN because we were trying to get pregnant but I was having cycles that were between 40 and 70 days long. After weeks of waiting for an appointment, I sat anxiously in the waiting room amongst a dozen pregnant women and piles of pregnancy and parenting magazines. I was an outsider. When my name was called, a nurse I’ll call Barb took me to a little room for more waiting. I could hear everything the doctor was saying to the pregnant couple in the room next to me. Barb came back in and started asking questions. “Your chart says you run?” I knew what she was implying as she looked my small frame up and down. “Yes, but only a few miles at a time right now.” Her retort was, “Well maybe you should stop off for some ice cream half way through.” She left the room and I was left feeling disciplined. Finally, the doctor came out of the room next door and I could hear him whispering with Barb. She told him I was waiting. “Oh my infertility patient is here!” he exclaimed. My first thought was, “Oh great now I have to wait for him to see someone else.” But then I realized the “infertility patient” was me. I seemed to be the last to know. Barb then went on whispering, giggling that she told me I should eat some ice cream on my runs. He entered the door to my room boisterously. I had been keeping track of my cycles with a computer program and had my brightly colored graphs to show him. He scoffed and told me I could throw them in the garbage, as they would not be helpful. He took away all my efforts at trying to control an uncontrollable situation. We talked awhile and he was finally getting to what we could actually do to help me get pregnant when his pager went off. He left the room and came back in and apologized and said he had to leave to go deliver a baby. He said not to worry because, “Soon it’ll be your baby I’m off to deliver!”

After trying Clomid a couple of times to no avail, this same OB/GYN offered me the opportunity to participate in a clinical research trial. The study included wearing a GnRH patch for a full cycle. The purpose of the patch was to induce ovulation as a means toward pregnancy. He convinced us that participating in the study was a great deal as we would be able to have a number of tests and get lots of information about what was going on with my body for free. Unfortunately, it was anything but advantageous. The patch was not like those bandaid-like estrogen patches used in many infertility treatment cycles. This patch had a plastic battery-pack type thing attached to it. I wore the patch on my upper arm all day every day. Every hour and a half it would release the GnRH in 10-minute intervals. The release felt like bee stings. For 10 minutes straight. Every hour and a half. All day and night. For a month. I felt like I was being stung because the patch was literally burning my skin. A research nurse monitored me closely and I can remember her taking pictures of the burns and how other nurses came in to gawk at my arms. Because of the burns, the nurse had me move the patch to my stomach. My stomach then quickly had burns all over it. Despite this torture, never once did anyone step in and remove me from the study. You might wonder why in the world an educated person who is well-versed in the ethics of research would allow herself to continue down such a painful path. But the answer is actually quite simple: You tell a woman desperate to have a baby that there is a chance, and she is willing to do anything. Not only did I not get pregnant, but the doctor never gave us all that information he promised.    

Another one of my worst experiences with infertility care came on the day when I had my second miscarriage. I was experiencing a lot of bleeding and so one of the nurses at my clinic had me come in right away. As my reproductive endocrinologist performed the ultrasound to check in on things, he barely said anything. When he was done I asked if he could see the baby and he tersely said, “We’re going to talk about that. I have other patients who are here. I hope you understand that.” And he left the room quickly. We were speechless. As we sat waiting to have some blood work done, a really cute pregnant drug rep was talking to one of the business office workers. They loudly discussed how great she looked and how the pregnancy was going. A little later we were back to the main waiting room and waiting to meet with the doctor. The cute pregnant drug rep had made her way to the receptionist who was also pregnant. Cutie launched into how ugly maternity clothes were and how she was just making regular clothes work for now. I sat there miscarrying my baby, without knowing if that was what was really happening, while listening to women discuss the clearly dismal perils of pregnancy.

Unfortunately, these are just a few examples of the abhorrent care I have experienced on my infertility journey. To this day I feel a bit ashamed that I allowed myself to be treated in such ways, quietly taking it like the good girl who respects authority that I am. Why would I want to do anything to piss off someone who had the power to help me get a baby? At the clinic where I received most of my care, I felt stuck. I stayed through three IVF cycles because my doctor offered us a reduced price after each cycle that did not end in a live birth. As he put it, we did not receive a return on our investment and so he was willing to cut us a break.[1] Because our insurance does not cover any type of infertility treatment, we sacrificed our desire for compassionate care for thousands of dollars in savings.[2]

When thinking about what kind of study I might do for O.B., my initial idea was to figure out what compassionate care really looks like in hopes of being able to offer providers insight into how to treat patients as opposed to simply providing lip service to compassion as a selling point.[3] I also wanted to investigate how doctors' compassion impacts patients’ treatment, psychological, and relational stress because I wanted to show that providers’ treatment of patients matters on a number of levels. So that is what I did, surveying about 200 women. I won’t get into everything I found in the study here. If you are so inclined, here is the link to the article. There should be 50 free copies of the full text article. If you are not able to see the full text and would like to, please feel free to email me at  

This study doesn’t address or fix all that is broken about infertility care. However, I do think it makes a small potential step toward the type of treatment that acknowledges, respects, and reduces suffering during what is often the most traumatic time in infertile couples’ lives. For this I am proud and find great meaning in O.B.’s short, nine-week life.

[1] I often felt guilty about being given a break, but it helped that our doctor parked his Porsche in the patient lot right in front of the building.
[2] This thought is heartbreaking, as our situation is not unique. Only 15 states in the U.S. require some sort insurance coverage for infertility. Along these lines, important to note is that my privilege allows me to be able to afford assisted reproductive technology, as the majority of infertile couples in this country cannot even dream of affording such care be it compassionate or not. 
[3] My clinic lauded compassionate care as part of its mission statement.

Somewhere Over the Rainbow

Somewhere over the rainbow
Way up high
And the dreams that you dreamed of
Once in a lullaby

Someday I'll wish upon a star
Wake up where the clouds are far behind me
Where trouble melts like lemon drops
High above the chimney tops
That's where you'll find me

Oh, somewhere over the rainbow bluebirds fly
And the dream that you dare to,
Oh why, oh why can't I?

A “rainbow baby” is one who comes into a bereaved family’s life after losing a baby through miscarriage, stillbirth, or death of a newborn. As rainbows represent renewal in the face of a storm, rainbow babies too represent hope in the midst of the despair of losing a child. Hand in hand, rainbows and rainclouds are reminders that there is beauty in life and loss.

Eighteen months have passed since Matilda and Milo were born and he died. After the babies came to us, we didn’t know if we would want to try again for more children. The extent of what we went through to get to bring Matilda home was obviously colossal. We soon recognized though that she is worth every second of the pain we have endured. The realization that we wanted more kids came to us relatively quickly, but figuring out how we would get there was more of a challenge. We met with our reproductive endocrinologist and fast decided that we had to let him go. We then interviewed a couple of others at different clinics and were ecstatic to find one who extended us the care and compassion we have always wished for and deserved. Saving money for an egg donor IVF cycle is no small feat, so even though we found our new doctor, we agreed that we needed time. We also thought it would be beneficial to wait until spring or summer of 2015 because that would make Matilda about three-years old when the baby was born. With a plan in place we went on with our lives, adjusting to an ever-growing toddler, learning to balance being working parents, and still grieving our precious Milo. But then as painfully and excruciatingly as our babies were taken from us, our rainbow baby as gracefully and quietly entered our lives.

In April my first cycle returned after weaning Matilda from breastfeeding. I offhandedly asked Mark one night what he thought about trying to get pregnant on our own. He nonchalantly said “yeah, we can do that.” We joked about being one of those couples that magically get pregnant after years of infertility and loss. So we sort of gave it a shot that first month. I downloaded an app on my phone to tell me when we should do it. Things got busy, I got tired so my grand plan to try to get pregnant was quite simply half-assed. Some time went by and 30 days later I had some spotting, which I thought was my second period. I was thrilled because I never have normal cycles and thought maybe my body had figured out how it should work after all of the hormones of pregnancy and breastfeeding. A couple of weeks later though some more spotting came, which was strange because the only time that ever happened was during my pregnancies. And then I was nauseous. I hesitantly decided to buy a pregnancy test. Mark was in the car when I bought the test; I told him nothing about my suspicions. I was acting strange all day and finally he asked what in the world was wrong. I confessed. We did the test and waited. When it was time, I looked at the test and immediately said, “Yeah not pregnant…but they should really make that line more intuitive so people don’t get confused.” I had never had a positive at-home pregnancy test before. Mark snatched it from me and said, “No, it is,” as if to say, “No, it is pregnant,” but I don’t think he could say the word. It was too scary. We sat there shocked. For a long time. Even after taking a second test. I was already six weeks along. Although my mind was in denial, I think my body knew from very early on that I was pregnant. There were a couple of strange incidents. One night right around the time the baby would have implanted, I was startled awake by a very quick sharp pain and I thought, “that was the baby.” Another night, I dreamt (embarrassingly) that I was giving birth to raspberries (Matilda’s favorite food).

I am 17 weeks pregnant this week. We had our appointment with the perinatologist for the first time last week. The anticipation and appointment were full of post-traumatic stress. This was the one where we found out Milo would die last time. But like magic, the ultrasound revealed that the baby is developing normally. And he’s a beautiful boy. Just like that, all is perfect. No selecting an egg donor, no saving thousands of dollars, no months upon months of stressful IVF, no heartbreaking news. Just like the most breathtaking rainbow you could possibly imagine.

Every day I struggle to get my mind around how this is happening. Writing this post is challenging, as I don’t easily have the words to describe what this experience is like, so counter to all those pregnancies of the past. I am so very thankful but so full of questions. Why did this happen now? Was I finally good enough? Am I a martyr to the cause of infertility and loss who finally gave enough to be deserving of a break? I never begged for this miracle, never so much as gently requested it. I am proud to be infertile, proud to be a mother of angel babies. My journey has made me stronger and more giving than I ever could be without it. I never wanted to be one of those women bragging about getting pregnant if their husbands so much as breathed on them.

Despite my questions and my uncertainty regarding why and how this is happening, there is one thing that is very clear to me: Without one doubt this baby boy, this miracle, this rainbow baby is a gift from our Milo. There is simply no other explanation. Despite my incredible fear, I feel him with me more so than I ever have before, telling me, “this is your time, Mama” and “everything is going to be okay.” And so hand in hand I walk, with my heartbreak and my hope on my way to what could possibly be my brightest days ahead.


Photos taken by my dear friend Gloria Soliz in Estes Park 8-17-14

Tuesday, January 14, 2014

The Eleventh Hour

A liminality is a threshold one reaches within a process of change that introduces the chance of moving to a new phase or back to the old. Those in liminal spaces are “neither here nor there; they are betwixt and between positions” (Turner, 1969, p. 95). In this sense liminal people stand waiting on the doorstep, but are not yet welcome to enter a dwelling place. Eleven months after Matilda and Milo’s birth and his death, I find myself in such liminal purgatories as I learn to exist as a mother to a living and a dead child.

Getting to be Matilda’s mother has brought me more joy than I could have possibly imagined before she came to me. If I would have realized the extent of this love when my infertility journey began, I’m not sure if I would have been able to travel such a treacherous road. The longing for her and not knowing if she would ever come to me would have wounded me so deeply that I would not have been able to persevere. This joy is partnered with an unnamable sadness that I have gotten better at keeping below my surface. However, it is constantly there percolating, begging for those who dare ask about Milo to tempt it out of me. Betwixt joy and sadness I do dwell.
Matilda 9 Months, Milo 3 hours

Similar to the notion of liminal spaces Anzaldúa (1987) defines a borderland as “a vague and undetermined place created by the emotional residue of an unnatural boundary, that is in a constant state of transition” (p. 7). Eleven months after my babies’ births, here at the border of transition is where I find my infertility. At Matilda’s daycare, I pass as just another fertile mother with my neatly labeled bags of frozen breast milk that I place in her classroom freezer each Monday morning. But pangs stab me when a father stops by to tell one of the teachers his wife is pregnant. My (in)fertility is a borderland, an undetermined space between finally birthing my child(ren) and not knowing if there can be more. As Calafell and Delgado (2004) contend about the borderland, “in this space the ability to manage the ambiguities of life, of social rules and roles, and of one’s own identity, become manifest” (Calafell & Delgado, 2004, p. 8). Indeed, who I have come to be remains in question. Existing in these spaces makes finding “my people” difficult. I don’t fit in with new moms; my son is dead. I don’t fit in with the infertile or bereaved; I have a daughter and she is alive. And so I seek out others who too are neither here nor there—a friend who just recently married and faces both the hope of getting pregnant and the fear of being barren, a friend whose husband has been given just months to live, a friend with an incredible mothering heart who chooses to be child free.

Liminalities render people without clear status, as if their former position has been filled as they wait to receive another that lies just beyond the corridor. Despite my own liminal space, yesterday I was reminded that Milo has arrived at a clear and unwavering homeplace. I finally got up the courage to go get Milo and Matilda’s birth certificates and his death certificate. After carefully filling out the forms, writing my check, and taking a number, I sat face-to-face with the woman helping me. We were so close yet so far away, as a glass panel with only a half-inch space below it to slide paperwork back and forth separated us. I held my breath while she clicked keys on her computer and asked for forgiveness, as her system was moving slowly. I felt sure some error would prevent me from being able to get the certificates. Her computer finally cooperated and she made check marks on Matilda’s form and then moved to Milo’s two forms. Check, check, check went her pen. My eyes began to well. It was true. His life and death were in the official system. She excused herself so she could go get the documents off of the printer. When she returned, she then slid them through the tiny space under the window. I was sure to take my time checking them despite the line behind me to be sure there were no mistakes. I was confused at first as the three documents were different. I was expecting two similar birth certificates and one death certificate. What I held in front of me at first glance appeared to be two death certificates and one birth document. I opened my mouth to question her, but then I realized what I was holding. Milo’s birth certificate, although similar to Matilda’s had the giant word, “DECEASED” stamped across it. My eyes about overflowed as I walked quickly to my car hoping the wind would not take these precious documents away from me. As I sat in my car, I again looked at Milo’s forms. His record of birth literally is stamped with his death. His death certificate is a reminder of what will never be: “Married—No,” “Education—0,” “Career—Infant.” Such beautiful and heartbreaking reminders that Milo has crossed over his border. His space is not liminal but permanent.
Milo's Birth Certificate

In one month I will make my way to a new year with Matilda and without Milo. I am afraid of what this will feel like. There is some comfort in remaining in a space that teeters between the sorrow inherent in grief and the elation of raising a child. Perhaps I fear that moving away from my heartache toward healing will mean that I love him less.

Despite this fear I take comfort in knowing I am forever grounded in one permanent position. Here I am never threatened to take a step backward toward a more liminal space. Here, after eleven months, I am still and forever will be Matilda and Milo’s mother.


Anzaldúa, G. (1987). Borderlands/la frontera: The new mestiza. San Francisco:
Aunt Lute.

Calafell, B. M., Delgado, F. P. (2004). Reading Latina/o images: Interrogating
Americanos. Critical Studies in Media Communication, 21, 1-21.

Turner, V. W. (1969). The ritual process: Structure and anti-structure. Ithaca, NY:
Cornell University Press.

*Thank you to Mark for his loving and thoughtful feedback on this post.