A Tale of Unseen Suffering: Experience of Recurrent Miscarriage Through Duoethnography

First Miscarriage

Our first experience was full of mixed reactions. I was hesitant to have children; however, I knew that I wanted, and should want as a young “Latter-Day Saint” (member of the Church of Jesus Christ of Latter-Day Saints) male, children. I fought the idea of having children for a matter of months before Jaxon and I decided to try to have our first child, approximately 6 months after we were married. Jaxon remembered that we set a date on the calendar for when we wanted to get pregnant. We decided to ignore it and try. She was scared to get pregnant; was not sure if she was ready or not. The day came that the pregnancy test read “positive.” I remember being excited, or excited to tell my family. Jaxon described feeling excited and mostly scared. In addition, she was embarrassed and explained that she did not know why. She was a little bit excited the more she became used to the idea. After a few weeks, she got used to the idea. We were told not to go into the doctor until she was 12 weeks pregnant.

Married life was moving along as it should. Jaxon and I had plans to go to Alaska for the summer to work. We needed to travel there separately due to differing school and work obligations. She drove up with her family; I stayed behind. On the drive to Alaska, Jaxon was starving and exhausted; stressing that the baby was starving. She was scared. She saw blood; bright, red blood.

“Why am I bleeding?

You don’t bleed when you are pregnant do you?

Okay this is more than spotting.”

That is when the freaking out heightened emotions really began. Jaxon was not sure what a miscarriage was, or what it was like to go through it. Jaxon and her family stopped at a campsite for the night. First thing she did was go to the bathroom:

Everything was all out;

all fell in the toilet with a loud splash.

I knew it was our baby.

I was flushing it down a toilet

in the middle of nowhere in Canada.

She began sobbing, yet even when family came around she wanted to control her crying. Social expectations held strong even during traumatic experiences. Her mom and dad tried to comfort her, but it did not bring the comfort she wanted. She said that her family was sad for her but they were not devastated like she was. Jaxon’s mom told her to call me. Jaxon felt scared to talk to me. She felt that the miscarriage may have been her fault, since she did not eat when she was hungry earlier in the trip.

We never know what someone is experiencing. One of Jaxon’s best friends began talking to her about wanting to get pregnant near the same time so the kids would be the same age. This conversation happened as Jaxon was going through the miscarriage process. Eventually the best friend heard from others that Jaxon was pregnant. Jaxon said that she “flipped out at me and [became] super upset. [This] made everything explode again.”

During this time, I was back in Idaho. As I heard from Jaxon over the phone what happened I thought:

“I cannot comfort her.

I wish I were with her.”

After we ended the phone conversation I thought:

“I don’t want to go to class

(I was on my way to summer school).

This wasn’t supposed to happen to us.

Having children is easy,

why did it not work?”

I was ready to cry. Instead of taking a moment, I entered class begrudgingly to keep moving forward. What else should I do?

Do I need to cry and mourn for a long time?

The day finally came when I arrived in Alaska. Jaxon felt like:

We were kind of strangers.

I had changed a lot in two weeks.

I’m kind of a different person now,

come get to know me again.

Alone in her grief, she continued to feel alone even with me there. However, knowing that there was someone else that was sad brought some comfort.

Second Miscarriage

Jaxon and I both noticed that the specific details of the second miscarriage were hard to remember. Before and after Jaxon became pregnant again, I remember the messages that started to develop.

“This is normal.

Keep trying.

It isn’t your time yet.

God will give you a child

when it is best.”

Before the miscarriage, we went to the doctor and the nurse said:

“Oh, it’s normal

to have at least one miscarriage.”

The doctor did not come in because the nurse did not think the doctor needed to come. While we originally wanted to see the doctor, at that time we trusted the nurse and were pacified. After more reflection, Jaxon stated:

I feel like they didn’t even care.

Jaxon stated that she remembers working out and beginning to feel crampy. She went home and prayed that she would not miscarry. Later, while in class, she ran to the bathroom to miscarry into a public toilet. She called me to tell me about the miscarriage, then went right back to class.

I had to go back to class.

to take my mind off of it.

I was in denial.

I didn’t want to feel.

I was flushing the baby down the toilet

but whatever, I need to be in class.

We both reflected on what we were perceiving as messages from society. The silence did not help as our perceptions went unchecked.

Miscarriage is not a big deal.

It’s not that heartbreaking.

It shouldn’t be hard.

You shouldn’t mourn,

you shouldn’t be upset,

you don’t need to be sad.

It’s not a real baby.

I have always thought that I needed to be there for my wife and that she needed to let out the emotion. It is her body. Partners of those who miscarry seem to see it as their role to console their partner (Rinehart & Kiselica, 2010). I wanted to give my wife support. I wanted to comfort her. I wanted her to know that I was there for her; however, after I consoled her, I did not process my grief.

I buried my sadness.

A pattern began to emerge,

I am there for her,

she would let out her emotions,

her fears,

her hopes dashed,

her questioning about the future.

Afterwards, we would go back to normal.

Eventually, my buried suffering would come out through my anxiety and feelings of being overwhelmed some weeks later. I continue to believe that central to my emotional state was my unresolved and unaddressed grief. How could I not grieve? I still believe that the unborn children are mine.

Third Miscarriage

Doctors would say to us, “we will start to worry after three miscarriages.” Jaxon became pregnant again and then after about 6 weeks she began to bleed heavily. We rushed to the emergency room late at night. We waited for what felt like hours in the waiting room, then waited again for what felt like more hours in the hospital room. I began to be angry with doctors at this point. I was angry that doctors did not seem to acknowledge, care about, or accept my suffering. My suffering and grief were minimized as “oh, this is normal.”

Should doctors care

about how they interpersonally impact their patients?

Is it their job to give the news

and if patients suffer they prescribe medication?

Do doctors even think about their way of being?

Questions like these surfaced as I consider

the role of the powerful MD or DO.

The doctor came in and checked to see what was going on. He concluded that Jaxon was miscarrying, but that some blood tests would verify this belief. We were told that the hospital would call us with the blood test results, but Jaxon most likely had miscarried. After what felt like an eternity, we left the emergency room feeling irritable, heartbroken, and confused. We began to mourn. Now we could officially start to worry. We reached the third miscarriage; we were in the recurrent miscarriage status. I felt terrible, but mostly tried to comfort Jaxon.

About 2 weeks later, Jaxon was still feeling nauseous and after a shower she passed out. We took her to a different doctor that was trusted by my family. We explained our miscarriage story and the details of our third miscarriage. The doctor told us that Jaxon needed to have an ultrasound and a blood test done immediately. The ultrasound started and we saw what we never expected. Jaxon described:

There was a baby still there

with a heartbeat.

We were super excited.

That’s not what we were expecting.

We both teared up.

A nurse called about the ultrasound and stated that Jaxon was extremely low on progesterone; a hormone needed for the child to develop, especially needed during the first trimester. She began taking a prescription supplement that day.

Life was good for a day. We were at a play at Idaho State University when I saw Jaxon go to the restroom in a rush. The well-known anxiety started to creep back in. She came out with a solemn look on her face. She miscarried for sure this time. After further reflection, this was worded incorrectly. Jaxon could not actually see the baby due to it being too small at 8 weeks. She could see more tissue so she knew she miscarried as she previously had miscarried. The child was flushed down the toilet. She described her reactions as:

Seriously, what is going on?

Mad at the emergency room doctors.

Mad at the first doctor

What the heck is going on?

I’m not okay.

I’m alone. . .

with people around.

I felt similarly. I felt upset, angry, sad, traumatized, and more:

How could this happen?

In one week, we suffered

the emotional effects of two miscarriages;

two losses of the same child.

I was on a rollercoaster ride

that I thought could not get any more difficult.

It did.

We continued on. Counseling helped, talking with family helped some, having the doctor on board to try to look into what is going on helped. Even with the support, I began to question the security of my world. I began to expect life to go wrong. I developed trust issues with doctors and with life in general. Jaxon described her feelings of social isolation.

No one talks about miscarriages.

Everyone [who] either had or hadn’t had one

just don’t talk about it.

She did not want to go to class the next day, but she chose to go anyways. She was doing an acting scene where she had to move around a lot. Whenever she would stand blood would come out. The most traumatic part for her was passing the tissue; she said:

Flush it down the toilet.

I felt like that was my only option.

What else do you do?

People do things to honor them,

I have never done that with any of them.

I kind of feel bad

but if I had known that I had other options. . .

Jaxon had an operation to clear out her uterus and to check on her ovaries and uterus to see what might be going on. The operation was inconclusive. Once again, I felt annoyance and anger with the unknown.

When will this ever be figured out?

Will we ever have children?

By this point I desperately wanted (want) a child. I love the children that I lost. I no longer felt the desire to have children out of obligation, but out of my genuine love. It is interesting to me how:

loss helped me find

what I most value.

Clarity came through suffering.

Enzo: Our Rainbow Baby

An invaluable and important piece of our story of recurrent miscarriage is that we did finally have a child. Our new doctor recommended that Jaxon try progesterone right away. This gave us hope; something to hold onto. The pregnancy was full of anxiety, fear, and worry for both of us but more for Jaxon. She described:

Every single day was a constant battle of my mind.

Am I going to miscarry today or not?

Oh, I feel something;

run to the bathroom.

Oh, three minutes later

I felt something again and I run.

She was in a play production and the idea of being in front of a crowd only added to the worries.

I might miscarry.

What if I miscarry on stage

in front of everybody?

Jaxon did not understand her doctor. She perceived him as lacking empathy.

[The doctor] never suggested

or talked to me about the anxiety

maybe he wasn’t even aware of it.

“you’ve had three miscarriages

now you should just be happy

why should you be feeling anxious still?”

After 12 weeks, she was able to calm down slightly; having Enzo kick was especially comforting. To know that he was alive and moving brought a peace like nothing else could. While the kicking helped, it did not bring a complete peace. Jaxon describes her social interactions as

everyone’s like “oh I am so happy for you

are you so excited and so happy?”

Couldn’t just be like “no I’m not happy,”

It was supposed to be happy time. . .

but for me it wasn’t.

Gender roles was another area of important reflection for Jaxon. I did not have to carry the baby. The physical and psychological presence was not the same. Jaxon said,

The guy doesn’t carry the baby.

The guy doesn’t feel the baby kick.

It’s not constantly on your mind, 24/7.

It was for me.

I cannot imagine what it would be like to each day know that a child is developing inside of me but to also have the fear every day that it could end so quickly.

My anxiety was vicarious.

I was around her anxiety,

trying to comfort,

trying to help her self-regulate.

Anxiety often won the battle.

The fear of Enzo’s death continued to plague us. This surfaced as other issues presented throughout the pregnancy. The doctors saw amniotic bands, sticky substance in the placenta that can cause the child to become deformed or can be fatal depending on if the bands wrap around the child (Shetty, Menezes, Tauro, & Diddigi, 2013), and later the doctor saw what he called lakes. We understood that the lakes could possibly take nutrients away from Enzo leading to death as well. No matter what happened, it felt like we could not escape crisis scenarios.

Jaxon explained how she did not feel Enzo kick one day. She began hyperventilating and became alarmed that Enzo was dying. She prayed,

if the baby is going to live

please let him kick now.

He kicked hard.

The prayer and the kicked hard answer brought peace to her that could not be brought any other way.

The day that Enzo was born was the best day of my life. We finally had a child together. I remember feeling the most overwhelming love that day. To see my newborn child and spouse together is a memory that I cherish. I do not believe that I would have felt this deeply for my son if it were not for the previous miscarriages.

Am I saying that I am grateful

for the past miscarriages?

No,

yet I do believe that the suffering

changed my perspective;

shaped my priorities.

Although Enzo was born healthy, that did not mean that our fears and worries subsided. Jaxon remembered that she did not want Enzo to be alone in his crib for several nights. Family helped out. They were willing to stay up in the night with Enzo to bring us comfort while we slept. After family left, Jaxon reported,

I was afraid that he was going to die.

I couldn’t just be happy.

I was super stressed out and crying,

a mess and depressed,

couldn’t be in the moment.

I regret that now.

With time, Jaxon described getting to the point of feeling more peace and of being able to be in the moment with Enzo. Time brought a peace that could not be forced to come sooner.

I often look at my son and cherish the moment with him. I love being a father. This depth of feeling sometimes led (leads) me to feel more loss for the previous three miscarriages. Questions continued to surface:

Am I a father of four or one?

Will I see my other children again?

I remember coming home from work one day and feeling overwhelmed with sadness for not having the other three children. I spent time talking with Jaxon and time playing with Enzo. The sadness lessened.

I can say that even if miscarriages continue;

I finally at least have one for sure.

Fourth Miscarriage

The fourth miscarriage experience was not as emotional because it is not clear if it truly was a miscarriage. At the same time, it brought up similar reactions and started to hint at future worries. Jaxon and I decided to have another child and we expected, or hoped, that since we were able to have Enzo that the miscarriages would cease. Jaxon was late on her period and started to have symptoms of pregnancy. Later she passed tissue and we interpreted this as a miscarriage.

Jaxon said that she understands her body; she felt pregnant. The loss of the potential child could not be forgotten. Jaxon expressed,

I want to count it,

so I say I have five.

I don’t want to leave one out.

Some might challenge the fact that because the pregnancy was not confirmed, then perhaps we should not worry.

How can I not worry?

How can I not mourn the loss

of a child that could have been?

This miscarriage led to worrisome thoughts:

Are we still going to have problems having children?

Was our hope in progesterone false?

Are we back where we started?

Will we only have one child?

Should we start to consider adoption and foster care?

Fifth Miscarriage

Jaxon became pregnant, and a pregnancy test confirmed it. We were excited. We started to tell family. I was still pushing away the thought of miscarriage as much as possible because the fourth miscarriage may not have really happened. We were in Alaska for the winter holidays. She was with her mom and sister in town. She had been getting some chiropractic work done on her back. Excitement surfaced first, followed swiftly by the worries. She said,

I don’t want to miscarry.

What if what the medical provider

did makes me miscarry.

I started to freak out.

Jaxon explains receiving comfort from her mom. “You have Enzo, why would you miscarry again?”

Jaxon decided to

choose to be excited and happy

try not to be so worried and anxious this time.

She prayed to receive comfort and felt that she received an answer from God that this pregnancy was going to work out. This answer gave her comfort.

We returned home from the holidays and Jaxon eventually started to bleed bright, red blood. We thought we were experiencing another miscarriage. Jaxon described feeling

Numb,

I don’t understand,

But whatever. . .

Yet, the next day brought a triggered, tearful response. The day to process that she was potentially miscarrying again brought reality to the situation. Jaxon said she was

really hurt, upset, and sad;

upset with God.

Jaxon called the doctor and they asked her to do some blood tests. The results suggested that she might still be pregnant. We went to the doctor’s office and did an ultrasound. It showed the possible beginning of a fetus. The doctor was not sure if it was the baby or not because it was so early. He told us to come back in a week.

That week was pretty miserable, especially for Jaxon.

It’s her body,

I can find distractions

stay busy with school and work.

We prayed and I fasted with family (religious practice to accompany prayer in special circumstances; Jaxon did not fast since she was pregnant). I was looking for a miracle. Jaxon and I hoped and believed that God could bring us another child. Jaxon remembered the feeling that she got when she prayed and received an answer that the baby would be okay. She said,

“I was excited

but also didn’t want

to get my hopes up too far.”

Another new area of strength for Jaxon came from social support. She reported,

I learned a lesson:

it’s easier for other people

to help you bear your burdens

than for you to bear them by yourself.

The next week came.

We went to the ultrasound in melancholy silence. I held my breath as the doctor started to look for the baby. I thought I saw the faint movement of a heartbeat. The doctor confirmed my belief. The baby’s heart was pumping. I remember feeling such relief and gratitude that the baby was alive. The doctor stated that the heartbeat count was low.

This brought some worry to mind

but it was overshadowed

by the hope and happiness of the moment.

After leaving the doctor’s office, we felt it was a miracle. Jaxon expressed her added hope that the doctor congratulated us. The next week she was frequently nauseous. She could not cook, had zero energy, I was gone all the time, and she said “the house was a mess.” She wanted people to come help; however, she explains that

people would say “can I help you?”

I didn’t want to put my burdens on them.

At the same time, I’m not dying. I can do it.

We had plans to return to the doctor a week later to check up on the baby. The week passed with some worry but mostly with a sense of consolation.

Our plans were working according to plan.

Another precious child was coming!

At the same time, Jaxon had a different experience.

Am I pregnant? Am I not pregnant?

Trying so hard to trust in her answer.

The doctor started the ultrasound process. We could see the baby but no faint movement. The doctor told us there was no heartbeat. I remember thinking that

he might be wrong.

We need a second opinion.

I did not want to believe what I saw.

I started to die inside

the moment I accepted

that the heart was not beating.

I was angry with the doctor. Why was he so business-like when he said the heart was not beating? Did he not care how we felt? Do doctors view their job as just doing medical procedures? Is not the emotional experience of the patient part of the medical process? It is for me.

Jaxon’s experience was similar yet different. She was devastated, yet she liked how this doctor handled the ultrasound more than the doctor the week before.

He’s empathetic

but not overly empathetic;

not stand offish

like some of the other doctors.

It’s interesting how different our experiences were of the same situation. It must be hard to be a doctor in a situation like this.

The baby was not living; no heartbeat but still inside of Jaxon. The baby stayed there for several more weeks. The day came that the baby finally came out. This was the first time that I saw the majority of the tissue and baby come out into the toilet. Before I had only seen aftermath tissue.

My baby was in a toilet.

I looked into the toilet

how absurd that a being that had been alive

was now going to be flushed down the toilet.

I could not do it.

I could not see the baby flushed down the toilet to sit with feces and urine. I wanted to put my hands into the toilet water, sift through the tissue and blood, and find my child. I sat there and consulted with Jaxon about what to do. She had been through this before and she felt more able to let the child go in this way; however, she did try to find the baby with some utensils. She counseled me by saying that we probably could not even find the baby and what else would we do with the baby if we did find it. We were in an apartment. We had nowhere to bury the child. Jaxon explained,

I don’t think people realize

how traumatizing it is

how much blood it is

you still have to have contractions.

It feels kind of like you are giving birth.

I hated the idea of flushing away my child. In the end, I chose to allow my child to be flushed away because the baby had been dead more several weeks. I could not bear to potentially see the baby in pieces if I sifted through the tissue and she or he was not complete. This was the only thing that stopped me. I now know that the baby was probably about the size of a poppy seed so I probably would have never been able to find him or her without a medical professional’s help, yet to this day, I feel that I do not care; I wish I would have searched for my child.

My child was flushed away.

I feel guilty about this.

I second guess myself on this decision.

I hate that I had to even make that decision.

I hate that the deaths of my five children were all behind closed doors and talked about with those that could not console me.

I was and am

mad and confused with God.

We prayed and fasted

and the baby still died.

I still believe in God, yet it does not mean that I am content with our relationship right now. I am still an active participant in my congregation, and I do not forget this experience of friction. I choose to trust in God even though I am angry and confused. Hope is a powerful thing.

Jaxon said that it was comforting for her to have me and other family members around during this miscarriage. She was not in a public bathroom. She had the comfort of her own space; however, she expressed the following reactions to messages about miscarriage in the ensuing weeks,

“oh, you miscarried.

It’s not a big deal.

Go to work.”

It’s so silent.

Our society is insensitive

to early miscarriage loss.

People say things like

“well at least you didn’t have

to hold your baby when it was dead.

At least you didn’t have

to hear the heartbeat.

It’s not even really a baby

you can still have an abortion.”

It’s so silent.

The Continued Unknown

People do not seem to understand; family, doctors, counselors, and classmates. Those who have experienced miscarriage often have not experienced recurrent miscarriage. Jaxon’s and my experience has been a roller coaster ride. I feel that we have gone through the emotional impact of seven miscarriages (two during the third miscarriage and two during the fifth miscarriage). I am exhausted and driven at the same time. Exhausted by the emotional drain. Driven to find ways to have more children. I love being a dad. I love being a husband. I love the small moments of learning with Enzo; of growth. I ache for him when he struggles. My purpose in life is

to have a family:

support, challenge, love,

cry, hold, apologize,

laugh, learn, break down,

simply be with.

I find this to be of the most meaning.

My current context leads me to be away from my family more than I would like, it leads me to struggle financially, it leads to a lack of insurance, it leads to a hollow experience of connection that only periodically clouds my mind of the holes that are in my heart. I do not know what the future holds. I feel more confusion in some ways than I have ever felt before. All I hold onto is hope. Hope that someday I may be able to more fully live my dream of family.