“I’m so sorry for your miscarriage,” a family friend said with the most empathy one might ever hope for in this kind of situation.
“Thank you,” I said. I was touched by her kindness. And then I surprised myself by adding, “… but I didn’t have a miscarriage.”
I don’t know why it mattered to me so much then. I’ve had four early miscarriages since, and I know that the end result is heartbreak and no baby. And now, when people confuse my first loss with a miscarriage, I’m not as quick to correct.
And yet …
The words we use are important when it comes to pregnancy loss. It’s not that our labels make any one particular kind of loss harder, worse, better, less or more. But each kind of loss is different. Each kind of loss deserves to be recognized for the unique pain and suffering it brings. Using the right terms for our losses helps us to better communicate our experience, which leads to better understanding and compassion from others. Which often leads to the right support.
And maybe that’s why I was adamant that my family friend understand that while I did lose a baby in my ectopic pregnancy, I didn’t have a miscarriage.
Here are the ways my pregnancy loss was not a miscarriage:
1) I didn’t just lose a baby. (And yes, that is hard enough on it’s own). I could have lost my life.
We all thought I had miscarried . . . my husband, my mom, the nurses. Cramps, bleeding and subsequent passage of tissue made it seem like our baby had passed. Except for the unsettling news that my HCG numbers had actually risen earlier that day. That, and my pregnancy symptoms increased during the days of my “miscarriage.”
A few days later as I got ready for my my post-miscarriage exam (which was originally slated as my first pregnancy exam), I felt a pop and then excruciating pain radiate all throughout my abdomen.
I knew exactly what happened, but I refused to fully admit it. I drove to my parents, who in turn pulled me from the car when I arrived at their house and threw me in the back of their car to rush me to the doctors. The nurse both supported my weight and helped get me undressed for the physical exam. Then a quick ultrasound verified what I already knew …
My fallopian tube had ruptured. And I was internally bleeding. I called my husband to let him know they were going to perform surgery, he needed to come right away.
The state of my voice, matched with the circumstances, scared him deeply. When he got in his car, he called his dad to let him know what was happening, ending with, “I’m not sure if she is going to make it.” He broke down right there in his car, then came to say what he feared might be his good-byes.
My dad transferred me fetal-position style to the hospital less than five minutes away, as they believed that would get me there sooner than an ambulance. I was dry-heaving, and my body began shaking uncontrollably from shock. The nurses gave the strongest pain medicine they had, but that only took the edge off and after fifteen minutes, the nauseating pain had taken over.
When they wheeled me back for surgery, my OB looked at me as though I were not a patient, but her own daughter.
“Listen, baby girl. I’m going to take care of you. I don’t know what your insides look like. I don’t know if you’ll need a transfusion, or if I need to take the tube, or if I need to give you a hysterectomy or do a D&C. But I’ll do all I can to save whatever I can. OK? I promise. I’m going to take care of you.”
The surgical suite looked chilling. An Asian man with a kind face leaned over, placed the mask on my face, and told me to count backward from ten.
“10 … I am so scared.
9 … Will I have anything left inside?
8 … I might die.
7 … It’s OK if I do, at least the pain will end …”
Blackness. I fell asleep, not knowing if I would wake.
2) I lost more than my baby. I lost a part of my fertility.
Nurses, anxious to get me out the door as my surgery was considered “same day”, tried to wake me as I rolled in and out of consciousness. Sometime that night, they roused me enough to tell me my baby was gone when I asked. That they had removed a half liter of free-floating blood, and a blood clot the size of a softball. Thankfully, my doctor was able to repair my tube and keep all my other organs. But I later learned that the offending tube and the resulting scar tissue could have contributed to my next four losses. I had a scarred tube, and a higher chance of ectopic pregnancies in the future. My fertility had been forever affected.
I lost my baby. Yes. I also lost a part of the fertility that would one day help me have a rainbow baby.
3) My baby was probably healthy. It was a part of my body that failed. And the guilt of that was consuming.
I don’t think losing a baby who had health issues would honestly be any easier to bear. But the thing that I hated with my ectopic is that it was MY body which had failed my baby. People tried consoling me that this was “nature’s way of taking care of unhealthy babies.” But this was not nature doing it’s thing. This was nature totally jacking up the process, costing my baby her life. There was absolutely nothing I could have done differently, and yet the thought plagued me (and still does to be honest) that I was at fault in someway for not keeping my baby alive.
4) I would never have a “normal” pregnancy again.
My ectopic put me in the high-risk pregnancy category. Every positive pregnancy test thereafter was met with sheer terror. Yes, I was absolutely afraid of loss. I was also terrified of another tubal rupture. Afraid that my “good” tube might be lost. Nervous of going anywhere that was not close to a hospital. Every pang and cramp that came with normal pregnancy ramped up my anxiety into hyperdrive.
My doctors and nurses wanted blood draws every two days to verify either a healthy growth rate, or to watch my numbers drop to zero. Early ultrasounds always required extra support as I never knew if they would find a baby in my uterus, a baby in my tubes, or no baby at all. (Most often it was the latter.) After three more early losses, our last loss looked to be ectopic by ultrasound, and there we were again, in my OB’s office discussing surgery to remove the baby I SO wanted. Thankfully (I guess?) my numbers began dropping, and wherever the baby had implanted, it passed on it’s own.
5) My physical scars ran deep.
Not just the emotional scars. It took more than a year for the random, sharp stabbing pain in my left side to subside. Almost two years of periods from hell for me to go back to a regular cycle. I struggled with symptoms of PTSD from my experience and needed counseling. My ectopic seemed to affect my ability to carry a baby to term. I also bear three scars on my abdomen from where they extracted my child and disposed of her as medical waste.
So no, I didn’t have a miscarriage. I had an ectopic pregnancy. And I care that you call it that because, while absolutely horrifying in its own right, “miscarriage” does not convey my actual experience with this pregnancy loss.
And the thing is, I know so many of you could write an article just like this for your own type of pregnancy loss:
- Your pregnancy was molar so you were monitored for months, had to delay trying to conceive, and maybe had chemotherapy and you and your family deeply worried about your health.
- You had a miscarriage with complications where the D&C resulted in long-term damage, or you hemmorrhaged and needed a transfusion, or your body failed to respond as it should resulting in extra trauma to you.
- Your baby was in the second trimester when you miscarried (which for all intents and purposes is really a stillbirth because you went to L&D, you had the choice of an epidural, you pushed that baby out of your body, and then you had to make decisions like funeral arrangements and and urns and caskets.)
- You had a stillbirth and you held that baby who, had they just been born while still breathing, might have had a chance at life. People assume you had an early loss, and you have to explain that your 7 lb 4 oz baby was not “tissue,” it was a real-life baby with handprints and footprints and their daddy’s nose and chubby cheeks. That you had to give birth in rooms next to women with live babies who cried. The nurses wheeled you out of the hospital with empty arms.
- The doctor used the words “incompatible with life.” You saw your precious little love on ultrasound and made the hardest choice a parent should never, ever have to make.
- You did not have just a miscarriage, you gave birth to a little baby who was breathing, who doctors fought for, and you fought for, but all the hope, and prayers, and medical intervention could not save your baby’s life.
Or maybe — You did have a miscarriage.
The loss of a baby is horrific and life-changing, no matter how complicated or uncomplicated the process is. Maybe you went to the ultrasound and saw your loved child lifeless and still without a heartbeat. Perhaps you started bleeding before you ever got to see your baby at all. Maybe you labored, but because you were “early” you gave birth to your child at home with zero support. Or you never announced and felt you had to walk through the loss in silence.
If you did have a miscarriage, I hope you can call it that and people can clearly understand and empathize with your loss. And if you had something other than a miscarriage, I hope you can also call it what it was and have have people clearly understand your situation and empathize with your loss.
When we correctly label our losses for what they are, it is not to highlight one kind of loss and disparage another. It is so that we can raise awareness, we can teach others about the intracacies of these situations so they can better respond with compassion, and we can own our experiences.
When I corrected my family friend, I did so with gentleness and grace. I quickly explained that in addition to losing the baby, I had to have emergency surgery, I was in a life-threatening position, and recovery took significantly longer as a result of where my baby implanted. She responded, “Oh my goodness. I had no idea. I’m so sorry you went through all that.” And with that short exchange, I felt understood.
Maybe it is just me. But I think it’s high time we declare . . .
Not all pregnancy losses are miscarriages. So please — let’s stop saying they are.
What about you? What kind of loss did you have? Is it important to you that people use the correct label for your experience?