An Ectopic Story

Over the past year, I have had the absolute pleasure of getting to know some wonderful women in my community. We very unintentionally formed this little “mom’s group” and it has truly been a saving grace through the ups and downs of parenting. As our babies run full force into toddlerhood, the aforementioned “ups and downs” have included many a new pregnancy among the mamas, and with those, some of us have found ourselves in the “1 in 4,” A.K.A. the miscarriage club.

As someone who has been open about her struggles with fertility on the internet, let alone with friends, I have become somewhat of a “miscarriage expert.” And honestly, that’s maybe the best thing that could have come out of my losses. Being able to be there for my friends in a way so many people can’t even imagine has been such a blessing.

Recently, I watched one of my dear friends go through her first miscarriage. What seemed like a “simple loss” took one turn after another, slowly becoming one of the most intense stories of loss I’ve ever heard. At so many points, this mama could have lost her life. There were so many symptoms none of us knew to look for, so many subtleties doctors didn’t catch. So the first time on this blog, the story I’m about to share isn’t mine. While I’ve edited a bit for anonymity, the words below belong to my beautiful friend as she processes the last month of her life and the loss of her sweet babe.

Before delving into this story, I want to provide a few definitions.

Miscarriage: A miscarriage is the spontaneous loss of a fetus before the 20th week of pregnancy (pregnancy losses after the 20th week are called stillbirths). Miscarriage is a naturally occurring event, unlike medical or surgical abortions. One in four pregnancies end in miscarriage. Definition courtesy of MedlinePlus.

Molar Pregnancy: A noncancerous tumor that develops in the uterus as a result of a nonviable pregnancy. There may or may not be an embryo or placental tissue present. If there is an embryo, it unfortunately won’t be able to survive. This condition of pregnancy is extremely rare, with fewer than 20,000 cases in the US each year. Definition courtesy of Mayo Clinic.

Ectopic Pregnancy: An ectopic pregnancy occurs when a fertilized egg implants and grows outside the main cavity of the uterus. An ectopic pregnancy most often occurs in a fallopian tube, which carries eggs from the ovaries to the uterus. An ectopic pregnancy can’t proceed normally. The fertilized egg can’t survive, and the growing tissue may cause life-threatening bleeding if left untreated. Definition courtesy of Mayo Clinic.

HCG Blood Test: A quantitative human chorionic gonadotropin (HCG) test measures the specific level of HCG in the blood. HCG is a hormone produced in the body during pregnancy. Definition courtesy of MedlinePlus.

D&C, Dilation and curettage: Dilation and curettage (D&C) is a procedure to remove tissue from inside your uterus. Doctors perform dilation and curettage to diagnose and treat certain uterine conditions — such as heavy bleeding — or to clear the uterine lining after a miscarriage or abortion. Definition courtesy of Mayo Clinic.

And now, for her story . . .

Few people know that the last month has been a rollercoaster for our family. If I am being honest, a complete nightmare. We weren’t sure we would share our story with anyone outside family and close friends, but I know that if our story can help one person be more aware, or make one person feel less alone in their own pregnancy loss journey, it’s worth it. So, here it goes.

We first found out we were 4 weeks pregnant on August 24th. We were so excited! However, just a week later, I had severe cramping and bleeding that we assumed to be a miscarriage; the first part of our personal nightmare, and one so many parents go through. I went in for the routine HCG blood test just a few days later so that my doctor could monitor the drop in hormones and to our surprise, my HCG levels were rising! From there, things seemed to both spiral quickly and last an eternity. 

For two weeks my husband and I anxiously watched my HCG levels rise appropriately (though a little slow at first) and my doctors were hopeful the pregnancy was successful after all. We had hope. We prayed a lot. It felt like an eternal limbo for us both. But, something didn’t feel right.

My whole body ached. My arms and legs felt dull. My stomach hurt. I was still bleeding. Everything felt wrong, but I was told it could all be normal pregnancy symptoms, so we pressed on through each blood test. We wanted it to be normal so bad. But I wasn’t listening to my body.

After three weeks of blood tests, I finally went in for an ultrasound. It was then that the doctor determined there was no baby in my uterus, only a mass of blood and tissue. I was diagnosed with a molar pregnancy, and told it must be removed immediately to avoid severe complications. The doctor was worried about how large it was, so I was scheduled for a D&C two days later.

Following the surgery, we thought we had finally come to the end of our pregnancy loss and could begin healing. However, something still felt off. I did feel slightly better, but my body still ached and I felt so fatigued. We lived like this for four more days.

A follow-up blood test four days later and a weekend phone call from my OB finally provided us the startling answer as to why I didn’t feel right. I was still pregnant. My HCG was still increasing. At that point, my doctor confirmed it had to be an ectopic pregnancy, and told us to get to the ER right away.

An ectopic pregnancy occurs when a fertilized egg implants and grows outside of the uterus–and in most cases and mine –in my fallopian tube. With little time to process, all the while hurrying to find childcare for our two year old son, we rushed to the ER. After a four hour wait, I was given two injections of a chemotherapy drug (Methotrexate) to stop the pregnancy.

The most tormenting part of an ectopic pregnancy–for me at least–is that there is nothing presumably wrong with the fetus as far as chromosomes are concerned. It has simply gotten stuck in the tube. Regardless of how far we have come with modern medicine, ectopic pregnancies cannot be moved to the uterus. They will never be viable, because they just cannot grow to size in the fallopian tube. This means that the pregnancy has to be stopped in order to save the mother’s life; every moment carrying this form of pregnancy puts the mother in severe danger of a ruptured tube.

As parents who are strongly against termination, this was the hardest thing we have ever had to do, and it still haunts us both. Though there really isn’t a choice–because the baby won’t survive regardless–it’s still one of the hardest things a parent can be asked to do.

Neither before nor after the chemotherapy shots was I offered an ultrasound or further tests, even though we asked multiple times. The emergency room doctor told me because my HCG levels were only at 4,000 mIU/mL–Chemo drugs are no longer useful once you’ve roughly hit the 5,000 mark–the drugs would be sufficient and sent us home. My husband and I were completely terrified (and a little numb), but we trusted the doctors so we went home and went to bed.

Three hours later, in the middle of the night, I woke up the sickest I have ever felt. Sweating profusely. In pain. Confused. Nauseous. Ready to throw up. I started towards our bathroom and that’s the last thing I remember before waking up on the floor with my husband cradling me, yelling my name, willing me to wake up.

I had passed out and hit my head on our shower. I couldn’t move. Thankfully, God blessed us with amazing friends just streets away and my husband was able to call someone over quickly to watch our son (who was sleeping) while he rushed me to the ER. I have never seen him so scared in our many years of marriage, but his quick thinking and actions undoubtedly saved my life.

By the time we got to the ER, I couldn’t stand without passing out, I was shaking uncontrollably, and I was in an incredible amount of pain. My blood pressure had plummeted. Many tests and an ultrasound later, they found my right fallopian tube had ruptured as I was sleeping and I was bleeding internally.

I was rushed into emergency surgery at 4am on September 21st, almost exactly a month after finding out I was pregnant. I lost my right tube. I lost a lot of blood. But God was with us that night and he kept me safe. It wasn’t until after surgery that we learned that ectopic pregnancies, to this day, are the #1 reason for pregnancy-related deaths. That’s a scary fact for how little is known, I think, about ectopic pregnancies by the general public. And that’s why, in part, we are sharing this deeply personal story. 

We are home now and have spent weeks recovering. Though the incisions will heal and physically I will be okay, emotionally this has been much harder for us to process. It’s still very raw. We lost the baby we tried so many months for. I was terrified of leaving my boys that night. My husband was scared he was going to lose his wife. I think this will take us awhile. I don’t know if anyone ever truly heals from pregnancy loss, you just learn how to accept it and live your life the best you can.

We knew next to nothing about ectopic pregnancy prior to all of this. I had read about it in search for answers early on, but my symptoms didn’t really match up with what I read. I didn’t feel right, but I didn’t feel as sick as the internet said I should feel. I didn’t have extreme pain or bleeding throughout the entire ordeal.

Looking back, I actually felt relatively okay after my D&C, though now I know that only a blood clot was removed, not a tumor or a fetus as was believed at the time of surgery. My first ultrasound weeks prior didn’t show anything alarming in my tubes, which is why a molar pregnancy was incorrectly diagnosed. My doctors had mentioned the possibility of an ectopic pregnancy early on, but thought it unlikely. It’s rare. I had no risk factors.

Those who tend to experience an ectopic pregnancy have tube scarring from things like an appendix removal, previous infection, or STD. That was not me. I had zero scarring and no previous health conditions. So, something like this would never happen to me, right? But it did. It did when it shouldn’t have.

I replay the last month in my head over and over and over. And I know my husband does too. It hasn’t stopped yet. I knew something was wrong. I’ve had a healthy pregnancy before; I knew something didn’t feel right this time. But I didn’t listen to my gut because you never think tragedy will strike you. I didn’t want to sound melodramatic or paranoid. I talked with so many family and friends about what was going on and how I was feeling, and no one clued in to what it could be. No one knew.

Could most of what happened been prevented? I believe yes. Now, don’t get me wrong, I respect my OB. But doctors are people too, and they see a lot of patients. They don’t know your body like you do, and they aren’t clued in to everything that you’re going through. They need you to very explicitly tell them. And push them. You are your best advocate. 

Things happen and we are trying so hard not to dwell on the what-ifs. But, I believe that I could have listened to my body better and that’s really the point I want to drive home. Listen to your body, listen to your gut instinct. I truly knew something was wrong. I should have been in less denial and been better at advocating for myself. I downplayed my symptoms in my own mind because I didn’t want there to be anything wrong.

I should have asked my doctors more questions, demanded more ultrasounds. Especially during our first visit to the ER. I should have taken better charge of my care because in the end, it’s my body.

Now, my circumstances are somewhat rare in that I presented oddly for an ectopic pregnancy, but I urge you to listen to your body and don’t be afraid to speak up and ask those pesky questions. Do your own research. Your health is important. Don’t just rely on the fact that what you are going through doesn’t 100% line up with what’s out there. It most likely won’t because we are all different human beings with different bodies. Life isn’t black and white.

I didn’t have the risk factors or all the symptoms of a classic ectopic pregnancy. My HCG levels were under what they should have been for a rupture. Yet here we are. 

With that said, if you’ve been through pregnancy loss, give yourself so much grace. That’s what we are currently working on. It’s been incredibly hard, but it’s incredibly important. Remember, it’s okay to cry or not cry. Share your experience or don’t. Everyone has their own process.

My own process has been so much different than I thought it would be. My husband’s has been different too. But we are learning to grieve and push forward together. Writing our story has been helpful for us. I strongly encourage you to talk to your spouse/partner or trusted friend when you are ready. Don’t feel alone in your loss. It is, unfortunately, so common. Someone somewhere knows what you are going through. I don’t know anyone who has had an ectopic pregnancy but talking to close friends who have experienced miscarriages… the pain is the same. I have been so blessed to have a support network to lean on and grieve with me. You absolutely need that. Don’t go at it alone.

My husband and I thank God every day for what he’s blessed our family with. Though this has shaken us to our core, it has not, and never will, shake our faith. Just because things didn’t work out how we prayed they would, it doesn’t mean God wasn’t listening and hasn’t or won’t, answer those prayers. We trust Him, we lean on Him, and know that He’s got our backs in this no matter what. For now, we choose to heal by thanking God for what he has blessed us with, focusing on our perfect son at home, taking the time to heal physically, talking to each other, and planning for our future addition when the time is right. 

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