As I am preparing to go to a pelvic MRI this Wednesday, I realized I haven’t even addressed what it’s like to have a uterine anomaly on top of this loss. As if enduring the loss of our baby girl wasn’t enough to go through, we are dealing with the potential of never being able to have other babies. I was born with a uterine anomaly, called a septate uterus, that we discovered early on in my pregnancy with Lennox; although, we didn’t know the severity of my particular case until a few weeks ago.
My heart has been nudging at me to share our story on our pregnancy barriers, in hopes of giving insight to both the complexity of our grief, and also offer support through our story for those who may be facing something similar.
It’s been heavy, for a lack of a more accurate description. I have been so up and down and disconnected from my world in the past few days. I am consumed by the grief of losing our daughter and the fear of potentially never being able to have the family we desire now more than ever. We’ll find out, after my MRI this week.
There are many people who struggle with infertility issues; many who desperately long to have a baby and face this suffering in silence. And for the amount of people who find that the road to pregnancy isn't an easy one, it is a topic that needs to be addressed more than it is, quite frankly. I write this hoping that anyone reading who is struggling from any fertility complications and/or grieving from baby loss will discover that although it feels like it, they are not alone in their pain.
I am sure there are others out there who have also lost their child and are facing the potential of never being able to have another. People whose only reality with parenthood could be one of trauma and despair. As I have found out in the last few months, none of us are invincible from sufferings that we never imagined facing, and my story could include being unable to ever carry children. That possibility and wait to find out is absolutely wrecking me.
Loss, by our society, is not addressed in such a way that supports someone grieving nearly enough. (For starters, my work only granted TWO days of bereavement after the birth and death of my child- and this unfortunately isn't uncommon). Similarly, those with fertility barriers or struggling with infertility (many more than you may ever realize) are also enduring this pain almost completely by themselves. It is a harrowing, lonely journey. One that makes every pregnancy announcement and update, and every infant picture feel like a pierce to the deepest part of your soul. It's a feeling I don't think someone could even grasp unless they have experienced it themselves.
We discovered I had a rare uterine anomaly when I was 7 weeks pregnant with Lennox.
I remember the appointment vividly. Every little detail just about: the way the lobby was arranged; the feelings of sitting in the chair in anticipation of seeing our sweet baby; the fear that we may not see a heartbeat like we hoped; grabbing my husband's hand and seeing the flicker in our little peanut baby; the joy. I still have that vision of her seeing little heartbeat for the first time ingrained in my head. I hope it’s there forever.
I was almost in shock to see the heartbeat. I think I had convinced myself I wasn’t pregnant so much so, that I half expected the tech to say there was nothing there. That sounds so strange, I’m sure, but I guess it just didn’t feel real yet. I was afraid to get my hopes up too high if there would only be disappointment. Oh, if I had only known. But then again, maybe it’s best I didn't.
I was so happy that our baby was doing so well, yet within moments after, that joy got laced with fear.
Our ultrasound tech asked a question that concerned me. I remember her saying “you have two endometriums, did you know that?” Huh? I had absolutely no clue, and that sounded like a complete foreign language to me. The doctor came in and she explained that I had something called a septate uterus. Another term that I had never heard of. When I asked for clarification, I feel like I never really got one. Maybe I did, but all I can remember is her repetitive statements that felt kind of cold and gave the impression that this pregnancy was not going to last.
She wasn’t mean, but she was very short and to the point and it honestly made me more afraid. She kept telling us “don’t google it” “it isn’t your fault, okay? You didn’t do anything wrong” “there is nothing you can do” She made me so uneasy as she kept repeating that last statement. Nothing I can do about what? I began to interpret that as she was sending us home for a miscarriage. She still gave us the estimated due date of August 12th and congratulated us as we left the office. Yet, those haunting words of “there’s nothing you can do” echoed repeatedly in the back of my mind overshadowing a lot of my excitement with fear.
Naturally, we did what every person would do, and googled. How could we not? I was absolutely horrified at reading the statistics and the risks. The chances of our baby making it to the second trimester were not encouraging. There did not seem to be a lot of research on the condition, so sites had differing statistics. On average, it appeared that the risk of a miscarriage (losing the baby before the second trimester) has been listed as anywhere from double to triple that of a traditional pregnancy.
I read about increased risk for preterm labor, pregnancy complications, miscarriage, lower birth weights, developmental delays. The more I read, the more I panicked. It struck me how much I loved this little baby already. I guess it’s true, you become a mom the instant you become pregnant.
I was babysitting that night, and it was all I could do to get the kids to bed before the heaviness in my heart melted into sobs. I just sat on their couch and cried, feeling so defeated and so afraid. I wasn’t sure if my baby would make it another day or week. I was prepared for the pregnancy to end at any given moment.
Despite the fear, we chose to carry on with hope. Every week that went by we embraced and celebrated wholeheartedly. We especially celebrated when we reached the so called "safe zone"- a phrase that becomes obsolete to those who've experienced baby loss.
We started seeking answers in early June, about three months after Lennox died. It began with an ultrasound at our OBGYN, who determined that the preterm labor was caused by my septate uterus. He then referred us to a fertility clinic who we have been working with ever since.
Now, I am no Reproductive Endocrinologist (spoiler, I know), but I will take my best stab at explaining what this is. I get a lot of blank stares when I share my condition, and honestly, I would have probably given those myself if this had not happened to me. It isn’t very common. And, let’s be honest, typical topics of conversation just don’t wind up on the various uterine malformations out of the blue. Like, ever.
A septate uterus, as explained to me by my Reproductive Endocrinologist, is a uterine anomaly that occurs while a person is developing in-utero. Everyone’s uterus starts off separated, but as your body continues to form, the tissue is reabsorbed, and creates the cavity in your uterus that will one day hold your growing child. For those of us with a septate uterus, I saw varying reports of somewhere between 1-4% of the population, our tissue did not fully reabsorb like it should have. Somewhere along the line, it just stopped.
For everyone, the thickness and length of the tissue look a little bit different. It leaves an abnormal uterus, having two separate cavities with tissue separating it down the middle, rather than one. Think of an oval (that's your uterus, simplified for an easy visual) and next, think of a T from the top of the inside of the oval down. The tissue usually does not go into the cervix, and from what I understand, is usually not very dense or thick. For many people with a septate uterus, likely those with minor division or thin tissue, they have healthy pregnancies with little to no complications after reaching the second trimester.
However, a couple weeks ago at my hysterosalpingogram (HSG) exam with our Reproductive Endocrinologist, we discovered that mine is different. My tissue is wider and more dense than what is commonly seen with a septate, and goes into my cervix. This poses a risk for both recurrent early miscarriages, as well as a risk for losing another baby to early preterm labor, in the same way we did our sweet girl.
While I was pregnant with Lennox, we couldn’t tell what my tissue was like. Since she was in one of the cavities, and growing, she had pushed the tissue aside, as most babies do in mothers with septates. Since it was difficult to tell what the tissue was like at this point, and there appeared to be no problems, the doctors were cautiously optimistic that all would go well. None of us anticipated the early preterm labor, and none of us had any way to stop that from happening, either.
Typically, a septate uterus can be removed through a myomectomy (outpatient surgery that will remove the fibroids and open the cavity space in the uterus). However, as I type this, it is unknown if I am a candidate for this surgery due to the thickness of my tissue. My doctor described it as "unusual." I have an MRI this week, and the heaviness of waiting and all the uncertainties is debilitating.
I am waiting for a result that will be life altering.
I can’t even begin to fathom the idea that I could be told there is some other underlying reason or condition, or that the density of it makes it inoperable. That would essentially be telling me that I cannot have children on my own, at least without serious challenges. The risk while carrying a baby without this tissue removed is extremely high, and not something I am willing to gamble with. To lose another baby like that would be impossible.
The past few days I have felt the heaviness creep up, as much as I have tried to push all the what if’s aside. The reality is that this IS frightening. The uncertainties are crippling. What's worse, is I could be getting ready to face even more difficult news. I could be getting ready to hear that being able to carry a baby on my own is not plausible and there is nothing they can do to fix the septate. I could find out that I have some other condition in addition to a septate that poses other risks. I could hear that my hope I have been holding onto is officially gone.
People suggest not to think about all the possibilities. That goes completely against human nature, in my opinion. It is way easier when you are not the person living through the trauma and facing all of the unknowns yourself to say those kinds of things, and to think they are possible. No matter how hard you try to block out all of the fear, it still catches up and overtakes you. You begin to also grieve everything that could happen in anticipation, preparing yourself for any horrible news on the horizon. A defense mechanism to being caught off guard by heartache once again.
I can’t seem to focus. All my thoughts eventually redirect back to my fears, and subsequently to my loss. The complexity of grieving your baby and facing an anomaly that interferes with future pregnancies is beyond anything I could possibly articulate.
Lately, it has been explained by a lot of tears as we wait. A lot of tears, and a lot of clinging onto any shimmer of hope.