Pregnancy Loss and a Devastating “Diagnosis”

I’ve shared pieces of my story on here. I’ve shared about Ava’s Story. With October being Pregnancy Loss Awareness Month, I decided to dive more into Chronic Histiocyctic Intervillositis (CHI) as it relates to my experience with loss. After all, this blog’s purpose is supposed to be about CHI and my journey navigating future pregnancies with it looming over. I have been hesitant to sit down and really get into the medical aspects of what occurred and what I’m up against because it is a lot, and maybe not the most entertaining. But, as this month illustrates, there are so many women who suffer pregnancy loss, but no two losses are the same. It can be incredibly lonely and frightening to be given a “diagnosis” of CHI on top of an already isolating trauma. So I’m here to share my story with CHI in the hopes that some day it will help even one woman not feel as alone and terrified.

I know some of what this post has will be repeating myself from previous posts, but bear with me because I want to try to encapsulate my entire experience up to this point. Also, this is by no means meant to portray the only way CHI can and does present, it is simply my experience and how it has impacted me.

Two years ago, almost exactly to the day today, I found out I was pregnant for the first time. I considered myself healthy – I just ran a 10K in under an hour two weeks prior. We went to the doctor and confirmed my pregnancy and figured out what the game plan was because we had no clue how to proceed with doctors appointments, scans, etc. We went in at 8 weeks for an early scan. There was no heartbeat and the gestational sac measured 5 weeks. I was told it was either that I wasn’t as far along as I had thought, or it was a blighted ovum, so they instructed me to come back in a week so see if there was growth/heartbeat. I knew there was no possible way I had only been 1-2 weeks pregnant when I got a positive pregnancy test, so I went home and sobbed into my pillow. The next week, I went into the scan with a brave face, knowing what it would show. Once again, I was told there was no heartbeat and that I needed to go home and wait for what would “likely be like a really bad period.” I was also instructed to get blood drawn every few days until my hCG levels lowered to below 10. I had my blood drawn every few days from mid-October to December. I bled for 3 weeks before I finally passed the gestational sac on Thanksgiving, then bled for another week. I will scream at the top of my lungs at any doctor who dares to tell me in the future that a miscarriage is like a “really bad period.”

I followed the doctor’s recommendations to wait 2-3 months before trying to conceive again. We tried for 5 months before seeing those two pinks lines.

This time, we knew nothing was guaranteed, but the doctor reassured us that a blighted ovum hardly ever happens twice, and it in no way meant that we wouldn’t have a healthy baby this time. With my history, we were able to get in for a scan at 6 weeks, and, thankfully, there was a heartbeat this time. We had another scan at 8 weeks and there was still a strong heartbeat, and the measurement was spot on. The anatomy scan at 18 weeks was perfect – measurements were right on again. The only thing was that it’s possible my fluid was on the low side of normal because the tech had to remeasure it to get an acceptable number.

We eased into feeling comfortable with this pregnancy. I felt morning sickness all day, everyday until about 14 weeks, but only vomited twice. The bottom of my foot was super itchy, without any visible cause from about 11 weeks to 23-24 weeks. My doctor was stumped and suggested changing my prenatal vitamin. At the time, I thought my skin was dry and suffering from stretching as I had some patchy red spots on my sides and chest. I didn’t even think to mention to my doctor because it didn’t seem like anything more than that and it didn’t bother me.

At 24 weeks, I went in for a scan and that’s when my world came crashing down.

The time between 18 weeks and 24 weeks, CHI had wreaked havoc on my pregnancy without tipping me or my doctor off in anyway, leading to the inevitable death of my daughter. CHI was “diagnosed” as the culprit from the placental pathology report. At this point in time, that’s the only way to know about CHI. I put diagnosed in quotations because it is technically not a diagnosis. CHI is the result of something occurring – it’s a symptom of sorts. The actual diagnosis is not something that is available at this point, meaning, no one knows what causes CHI. This something that occurs in my body, leads to white blood cells, or histiocytes, attacking the placenta. This sets into motion a series of catastrophic events: The histiocytes cause the tissue within the placenta to become inflamed, the tissue scars due to the attacks, cell “junk” begins clogging the space that is supposed to be free flowing blood that provides nourishment to baby. The reduced blood flow as a result of this clogging leads to growth restriction. Eventually, the ability to get blood and nutrients to baby is so compromised that the baby starts trying to keep the blood in her core as a survival strategy. The placenta is no longer able to sustain a pregnancy, baby’s organs reduce in function, and amniotic fluid doesn’t get replenished.

In the 6 weeks time that I was oblivious to all this, Ava had gone from perfectly on track, practicing breathing, even hiccuping, to one kidney ceasing to function completely and no amniotic fluid to practice breathing. She was only measuring about 20 weeks, rather than 24 weeks, so the effects of CHI were swift and severe in my case. After CHI sets in, it is possible for baby to continue growing, but growth will be slower than expected until it trails off completely. We have no way of knowing at what point CHI set in, but by the growth, it’s reasonable to assume that CHI had likely been starting at or before 18 weeks, we just had the scan right before the tipping point.

The heartbreaking reality is that there is no way to stop the inevitable once CHI sets in, that is, if baby is not already 500 grams, or at least close enough to in order to deliver. With a history of CHI, getting baby out is safer than keeping baby in. I know there have been cases where babies as small as ~400 grams have survived, but my doctors were not comfortable with less than 500 grams. When Ava was born, she was only about 311 grams. In addition to being unable to stop or reverse the effects of CHI after they have begun, there is no way to know that CHI is what is causing the problem until after delivery. There is no blood test for CHI and amniocentesis does not detect CHI. When we first learned of the problems facing Ava and my pregnancy, it seemed the doctors assumed it was pre-eclampsia, or that Ava had a heart defect. The only time I had high blood pressure was directly before the scan that confirmed she had died. Our appointment with the fetal cardiologist was scheduled for the morning Ava was stillborn, so needless to say, we never found out if Ava had a heart defect. However, once the pathology report documented CHI, I feel it’s fairly certain that Ava’s heart was not a role.

CHI is incredibly frightening to be “diagnosed” with – it is exceedingly rare as it’s thought to occur in 1 in 10,000 pregnancies. My OB, in reading my placental pathology report, told me that the recurrence rate is thought to be somewhere between 68-100%. He immediately followed up that statement with the suggestion that I will likely need a surrogate to be able to have a baby of my own.

I cried for an hour in my car in parking lot. I had just experienced the traumatic series of events leading up to and including my daughter’s death. Now, I felt like a door was just slammed in my face. The door that led to any remaining hopes and dreams I had was now shut and locked.

In the weeks after delivering Ava, I began to feel itchy, predominately on my forearms and legs, with hives. I had never experienced hives before in my life. I believe it was somehow related to CHI as my body was in chaos from that something, but that’s just my own theory.

Fast forward through every medical exam and lab I can get in the last year, and the only thing that came back was Graves’ Disease, which was likely triggered from the pregnancy, not a cause in my loss. So, I haven’t found anything that could possibly be the something that caused CHI for me. But, like I said, no one really knows what that something is yet, anyway.

So, pregnancy loss due to CHI – This is where it leaves me. No daughter to hold in my arms, and the frightening prospect of CHI almost certainly reoccurring in any future pregnancies I may have.

The death of Ava has taken so much from us. The accompanying “diagnosis” is also devastating in that I will never have a normal pregnancy and CHI looms over all pregnancies. The rarity of this “diagnosis” presents many challenges – It is so isolating to have something happen that others have never heard of, it is frustrating to have no doctors in the area who know anything about CHI, it is terrifying that the treatment protocol at this point is at best a trial-and-error guessing-game, and it is anxiety-provoking to even think about what a future pregnancy will bring. We have set up a treatment plan in the event I become pregnant. It includes tacrolimus which is an immunosuppressant that is commonly given to kidney transplant patients. There currently aren’t many documented uses in pregnancies where there has been a history of CHI, but what documentation there is, seems to be promising. The thought for using tacrolimus is that in CHI, the body has an alloimmune response to the pregnancy, much like a transplant patient rejecting their kidney. The tacrolimus suppresses the immune system so that the body can do what it is supposed to in pregnancy and turn a blind eye to the foreign DNA. It has become my lifeline of hope. The door that was slammed in my face has been unlocked and cracked back open. As terrifying and anxiety-provoking the thought of CHI reoccurring in my next pregnancy is, I wouldn’t be able to live with myself if I didn’t try.

3 thoughts on “Pregnancy Loss and a Devastating “Diagnosis”

  1. You don’t know me, but I am a Mom of a 3 1/2 year old daughter, Sloane. I’m a Realtor for Keller Williams, and I bartend 2 days a week at the Pourhouse downtown. Additionally, I suffered the loss of two miscarriages before becoming pregnant with my daughter…. and with that I endured a great deal of anxiety and heartbreak. Today, your husband sat at the bar at the pourhouse for lunch while I spoke to him about my pretty relaxed weekend. I shared that I spent time with my daughter and naturally I asked him if he and his wife (you) had children. I am confident I’ve asked him this question before and he wasn’t ready to share, but today he did. He said “none that are living.” My heart sank. I didn’t know where he was going next, but my heart immediately hurt for you two. I know first hand how people unintentionally make insensitive comments during times like these so I felt myself unable to fully respond. Truthfully, I cannot imagine the hurt you two have battled, but after he shared your story with me I couldn’t help but admire your strength. He ended the conversation by saying, “I’m sorry, I don’t mean to dump all that on you” and my immediate response was, “not at all! In fact, October is pregnancy and infant loss awareness month, so if there is ANY time to share your story, it’s now. And thank you for sharing” …. no doubt you two are an inspiration to many and you likely have no idea how many hearts you’ve touched, but ultimately, I wish you both the very best to remain strong and faithful. I’ll be praying for your rainbow baby ❤️

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