My Unicornuate Uterus Success Story
Intro
After about a year of trying to have a baby, I learned in the spring of 2022 that I have a unicornuate uterus. It’s a rare uterine anomaly that affects 1 in 4,000 people. There are several types of uterine anomalies, this being the most rare and also with the lowest chance of having a live birth.
I wrote this post to share my experience and give hope to others out there that also have a unicornuate uterus. The personal stories that others shared online gave my family and me hope, and I want to pass that forward to others.
Read on to learn about my diagnoses, pregnancy, and ultimately the birth of our child. This story has a happy ending, but the journey to get there did have a few bumps which I will cover in this post.
The diagnoses
My husband and I started our journey to understand our infertility challenges in early 2022.
Our blood tests (10 vials of blood from me in one appointment) showed nothing abnormal. We were both very healthy for our ages, so the next step was an HSG test to determine if the issue was with my fallopian tubes. I assumed that this too would show no abnormalities and would be one more test to check off before we moved on to a plan of action. We were probably one of the millions of couples that have “unexplained infertility” and simply just needed to keep trying.
I had no reason to think the HSG test would show anything abnormal. My period had always been fairly regular, and I never had cysts, heavy bleeding, or excessive cramping. I also considered myself to be incredibly healthy: I had no childhood ailments and worked hard to eat well and exercise regularly. My blood pressure, heart rate, and exercise regimen were things I took pride in (yes, I did and still do brag about my low heart rate).
The HSG (Hysterosalpingography) test was incredibly painful. In the exam, room the technician told me that I seemed to have a uterine anomaly. I was in too much pain and felt too exposed to focus on what he was saying. I knew that an anomaly couldn’t be good, but I didn’t know how “bad” this could be. I would wait for the follow up report and share it with my aunt, a retired OB/GYN, before panicking.
The HSG report came later that day. The results were inconclusive since the dye didn’t make it through both my fallopian tubes. The report stated that I may have a uterine anomaly such as a bicornuate uterus or uterine didelphys, but an MRI was recommended for a complete diagnosis.
This wasn’t good. I had some sort of uterine anomaly, but looking at the different types of anomalies online I distinctly remember the unicornuate uterus and thinking to myself “yikes, at least I don’t have THAT uterus.” lol….
I had the MRI a couple weeks later, which is when I was diagnosed with a unicornuate uterus. The good news was that I had both of my kidneys. I didn’t even know that I should have been worrying about a missing kidney! I won’t go into the details, but a female’s uterus is two separate parts that fuse together during fetal development. If a female only has half a uterus, it means the other part never formed, so there was no other half to fuse to. The kidneys also develop around this time, so a missing uterus half is typically accompanied with a missing kidney.
My diagnosis was that I have a unicornuate uterus with a single right uterine horn, or just one fallopian tube. I have two ovaries, which is why I had a regular period. However, I only had one fallopian tube and half of a uterus.
I had been walking around with half a reproductive system and had no idea. I was horrified and angry that I had gone my entire life without this knowledge.
Did the medical system fail me?
Shouldn’t I have known this crucial fact about me early on?
I could have been more mentally prepared. We could have started trying for a baby earlier, with less time pressure.
On the other hand, would this have put unnecessary pressure on us?
Is this something I really needed to know?
I had read a story about a woman who didn’t even know she had a unicornuate uterus until she had a c-section (with a full term baby). Maybe ignorance was bliss?
What’s so hard about a unicornuate uterus?
The challenge with a unicornuate uterus is that it is harder to get pregnant, and if you are able to get pregnant, it’s harder to remain pregnant. With one fallopian tube, my chance of pregnancy is only possible every other month on average. With half a uterus, the fetus may not have enough space to develop to full term. The fetus is also more likely to remain in a breech position due to the shape of the uterus. In the US, this means you would most likely have a c-section.
There weren’t many studies available because this is a rare anomaly. The ones we found stated that women with unicornuate uteruses had a significantly lower live birth rate and higher rates of miscarriage.
At consultation with the infertility specialist, he confirmed our understanding of the situation. He said that having a baby with a unicornuate uterus was going to be very challenging. He told us we should consider looking into surrogacy as an option. I knew the odds were against me, but I was devastated to hear him outright tell us to consider other options.
I wanted to try to get pregnant once, just to see if maybe we could get lucky. IVF didn’t make sense as a first option since my AMH levels, or eggs weren’t the issue. IVF would fail if the issue was my uterus. We could try IUI, which was less invasive. It can be harder for an egg to fertilize with the shape of my uterus, so IUI could help with that initial challenge of getting pregnant. Because we were both otherwise healthy, we did have time on our side.
So how did I get pregnant?
After the consultation and a tentative plan, my husband and I decided to take a break that summer from pregnancy talk. The diagnosis was a shock to me and I needed time to process it. We decided that taking a three month break would be good for our mental health. We had a trip to Paris planned at the end of September, so at least I could enjoy some wine during our travels! As we planned our trip, I started to get excited about everything I could do since I wouldn’t be pregnant. I was going to live it up with lots of wine, soft cheeses and oysters. I would be able to continue wearing my normal clothes, and we could plan a full itinerary without worrying about rest breaks.
As if out of a cliche movie, when we stopped trying, I found out I was pregnant after Labor Day weekend. I had a mix of emotions: excitement, hope, fear, and frustration. It was my first pregnancy, but I assumed it would end in a miscarriage thanks to my uterus.
After chatting with my therapist, we decided to come up with a plan to minimize unknowns and prepare for different scenarios. My biggest fear was that I had an ectopic pregnancy and my single fallopian tube would burst during a transcontinental flight. Is this going to end with me bleeding out in economy class on the way to Paris?
Thankfully, my doctor and the hospital staff were understanding about my fears and agreed to an ultrasound at six weeks. A six-week ultrasound is typically too early to see much, but they may be able to see if the pregnancy was ectopic or not. At that appointment, the doctor confirmed that I was pregnant, and the sac was in my uterus (meaning it’s not an ectopic pregnancy). We saw a blinking light that indicated the heartbeat. That blinking light gave us hope. Maybe things were going to be okay?
Planning for the next worst case, I asked the doctor how to plan for a miscarriage overseas. Since it would be pretty early, she said to just “let it bleed out” and know where the nearest hospital is in case I get a high fever. My packing list for Paris included peppermint candies for nausea (in case my pregnancy progresses) and pads (in case things go the other way).
How was the pregnancy?
The pregnancy actually went pretty well, from a physical standpoint.
I had nausea/morning sickness for about a month. Yes, that did end up overlapping with our Paris trip. I don’t recommend a trip to Paris during the first trimester of pregnancy, and I definitely don’t recommend a 10 hour flight when you have morning sickness. Thankfully I did not puke on the plane, but I spent the entire flight nauseous and miserable. I was miserable, but also hopeful because this meant my pregnancy was progressing. Most pregnancies have a higher chance of miscarriage in the first trimester. In this first trimester, I wasn’t so worried about my uterus as I was about whether this was a viable pregnancy at all.
We had set up milestones that I tried to focus on throughout the pregnancy. For the first trimester, it was just getting through the morning sickness and making it to the second trimester. We found out the sex of the baby around week 12 (a boy!), and the pregnancy started to feel a bit more real.
Once I was in the second trimester, I could breathe a bit easier. We had a viable pregnancy, but the next milestone would be the 20 week scan. At that point, we would know if our little baby had all of his organs and limbs. The scan showed no abnormalities, and our baby was growing normally. My uterus was holding up fine so far!
If I could make it to the 28 week point, then our baby had a high chance of survival if I went into preterm labor. Each week that passed was a celebration for us. During this time, I tried to focus on other aspects of the pregnancy that I could control. I ate well, exercised, and attended prenatal yoga classes on the weekends. I wanted to make sure the possibly limited time our baby had in the womb was as nourishing as possible for him. Focusing on these things helped me maintain a sense of control over my pregnancy, and I felt a little better knowing that I am doing the best I can given the circumstances.
My pregnancy continued to progress, just like any other pregnancy. During the checkups, the baby’s growth continued as expected, and my vitals remained at healthy levels. We passed the 28 week point, and made it into the third trimester without any problems or signs of problems to come. Does this mean we could celebrate?
My friends and family held a baby shower for us. Up until the third trimester, I was hesitant to even have one. I didn’t want to potentially jinx what was going well. But on the other hand, I wanted to celebrate this experience and also celebrate our little baby. I didn’t want to look back and regret that I spent my entire pregnancy a worried mess. I couldn’t control what my uterus did, but I could enjoy each day that I was still pregnant and focus on that. One funny thing was that my bump was visibly lopsided. Baby’s head was on the right side, and that made my bump appear lopsided to the right.
At the 32 week appointment, things were still progressing as expected. The baby was still in breech position, and our doctor recommended we start planning for a c-section. It seemed like our baby was quite comfortable up on the right side with his feet kicking my lower area. Our doctor told us that at our next appointment at 36 weeks, we can discuss the c-section date, or baby’s birthday. It would be sometime in May, and we started to chat about potential dates with our family.
It started to feel like having a unicornuate uterus made no difference in my pregnancy, aside from a lopsided bump and a planned c-section. I was honestly fine with a c-section. I had long given up on an “ideal birth plan” and just wanted my baby to develop as close to full term as possible, and for both of us to get out alive.
We started packing our bags after the 32 week appointment, just in case. I assumed that if I were to go into preterm labor, my water would break and the hospital would schedule my c-section within 24 hours. We would have time for last-minute preparations, and my mom would be able to come over beforehand. I was starting to believe that I could make it to the 37 week mark, which means our baby would be very close to full term. My pregnancy leave was going to start at week 36, and I hoped to have at least a week to finish preparations and have some relaxation time.
I had started to notice some swelling in my legs and feet around week 35. At week 35 + 1 day, I noticed that my left ankle was significantly more swollen than my right. We called the hospital advice nurse just in case. They said it was quite normal and since I didn’t have any other symptoms or issues, I didn’t need to go in. I had my 36 week checkup in a few days, so I could bring it up with the doctor at that point.
A few days later, at week 35 + 4 days, things changed very quickly.
I don’t feel contractions — how am I in active labor?!
On week 35 + 4 days, I woke up around 6am to get ready for a 7am work call. I felt the baby move in bed, as usual. I had completed a Peloton spin workout the morning prior, and this felt like another normal morning. If not for the early call, I would have likely done a prenatal strength workout via the Peloton app.
I went to the bathroom and noticed some bleeding. I didn’t see any clots or remnants of a mucus plug, but I was unmistakably bleeding. This made me a little nervous, since any bleeding in the third trimester meant an immediate call to the hospital. I called the hospital to get their advice on what to do. I didn’t feel the baby move at that moment, but I also did not feel any pain, contractions, or shortness of breath. The nurse told me that I needed to go into the labor and delivery center as soon as possible to get checked out. I texted my husband about the bleeding and instructions from the nurse. He had gone out to walk our dog, and quickly hurried back. I canceled my 7am meeting, letting the team know that I had a bit of a medical concern and would reschedule the meeting. I kept the rest of my meetings assuming I would be back by 9am or so. I figured the doctor would check me and let me know the bleeding wasn’t anything to worry about.
As I started to get ready, I got a little more nervous and decided to take my hospital bag just in case. By then, my husband was back and he also seemed a bit nervous. We quickly said goodbye to our dog, thinking it would be a quick trip and we would be back in a couple of hours.
I texted my mom and aunt in the car letting them know that I had a bit of bleeding and we were going to the hospital as a precaution. Again, I had no other pain or issues so I didn’t feel too concerned, but I started to get more nervous as we drove. I sent a slack message to my manager at work letting him know that I’ll be offline for a couple of hours because I needed to go to the hospital.
My husband dropped me off at the front of the labor & delivery center so he could park. At the front desk, I awkwardly told the security guard that I was told to come in. I didn’t say that I was in labor, so he thought I was there to visit someone since I appeared so calm. Finally, he understood that I was actually there for myself and he sent me through the doors.
The front desk had my file ready, and the nurse took me to the triage room. She had me undress and put a fetal heart monitor and contraction monitor on me. I told her about the mild bleeding and she also seemed unconcerned. She said they would monitor the baby and me for about 20 minutes, and then the OBGYN would come in to check me out so we can see what’s going on. By then, my husband had made it into the room and we waited. I hadn’t felt the baby move since I noticed the bleeding, but that also didn’t seem abnormal to me.
After about 5 minutes of monitoring, I felt a slight pressure, which I took to mean that the baby had shifted. I told my husband with a sigh of relief that I think I felt the baby. At the same time, the nurse came in and asked if I felt a contraction. I told her no, but I did feel some pressure which was probably the baby. She said it was a contraction, and then suddenly the monitor started beeping. She said something seemed off and she was going to go get some support.
The next thing I know, there were five hospital members in the small triage room with me. They told me that baby’s heart rate is dropping and I needed to get on my hands and knees, which could help baby’s heart rate steady. At that point, I was really nervous. While on my hands and knees, two members start to prepping my right forearm for an IV. They hit a vein and my arm was a bloody mess. On my left side, the OB/GYN was telling me that they needed to get me into the OR for a c-section, and started to tell me about the risks of a c-section. At some point, I’m asked to sign paperwork. I was afraid that we were going to lose our baby that day. I also had no idea how they were going to get him out of me quick enough. Was one of us going to die today?
Finally at long last, the baby’s heart rate steadied and things seemed to calm down. It didn’t seem like I needed an emergency c-section anymore.
They moved me to my side so I can get more comfortable as they continue to monitor. At this point, I thought that the scary part was over. I assumed that once they completed the checkup, the worst case would be that they would schedule a c-section within 24 hours.
A few minutes later, they moved me to my back and the OB/GYN examined my cervix (very painful). She told me that I’m 5cm dilated and since the baby is breech, they need to do a c-section that day. I still don’t feel any contractions or pain. I asked her when they would schedule the c-section, thinking we would have a few hours. She said that I’m in active labor, and the baby could start moving down the birth canal and get stuck. They needed to get going right away.
She tells me I’m having the baby today, and that’s when it hit me. I burst into tears and cry that I’m not ready for this. Since my pregnancy had been going so well, I had started to believe that we would make it to full term (or very close to it) with a planned c-section. It turned out that our baby would be born at 35 weeks, which is NOT full term. Someone brought my husband plastic bags for my clothes, and they wheeled me to the OR.
I didn’t have the complete picture until later, but I really was in active labor. In addition to being 5cm dilated, the hospital notes mentioned that I was having contractions every 3–4 minutes, and I was 90% effaced. I felt no signs aside from the light bleeding in the morning. I had no idea it was possible for someone to have contractions, and not feel them! In the labor prep classes, and conversations with friends and family, I understood that contractions are very painful and I would definitely feel them if I had them. It’s not uncommon for women to request an epidural when their contractions are 3–4 minutes. I have no idea how I made it so far into active labor without any pain or contractions.
The birth
In the OR, they prepped my spine for the epidural, which would make me numb below the chest. The staff asks about my birth plan and I tell them I’d like a delayed cord clamping and skin-to-skin asap. These are standard at this hospital, so I don’t worry about making sure the staff followed my wishes. This was not at all how I anticipated our baby’s birth would go, and at this point, I just want my baby to be alive and okay.
The c-section went well, and there were no surprises or abnormalities. Our baby cried when he was born, which was a relief for us. I wasn’t able to have skin-to-skin with him immediately since they needed to check him first, which was critical since he was a preemie. His weight was 6 lbs 5 oz, which the hospital staff referred to as the “biggest small baby they had seen.” He was a big baby for being born at 35 weeks. Our baby was healthy, and after some more checks and a bit of formula to get his body blood sugar up, I was finally able to have him in my arms.
That morning was a whirlwind: we had arrived at the hospital at 7:20am, expecting a quick checkup. Instead, I found out I was in active labor and needed to have a c-section immediately. Our baby was born at 8:51am, and I was out of the OR by 9:45am. Around 10am, I messaged my manager at work letting him know I had the baby and my maternity leave will be starting early.
We stayed at the hospital for two nights. The rest of our stay was relatively uneventful. We learned how to swaddle the baby, change the baby’s diaper, and breastfeed. 48 hours after we arrived at the hospital, we were ready to check out with our little one.
How are we doing now?
It’s been exactly 12 weeks to the day since our little boy arrived into the world. The birth experience was traumatic, and it took me several weeks to process what happened. It was a shock to know that it’s possible to be in active labor without my body giving me much of a sign.
The hospital staff was wonderful and did such a great job taking care of me and our baby. I am incredibly fortunate to have access to great maternal care here in California. I was able to choose between three major labor & delivery hospitals within a 20 mile radius. Unfortunately, this is not the norm in every state, and if you haven’t already, I urge you to read more about maternal mortality rates across different states and races. Pregnancy and birth are dangerous, and not everyone has a happy ending like my baby and me.
With all the surprises and twists during this journey, we couldn’t have asked for a better outcome. We have a happy little baby who’s been meeting his weight and milestone goals. At this point, I feel fully recovered from my c-section and have started up my Peloton strength and spin workouts. I have about two months left of my maternity leave and plan to soak it up as much as possible.
I also want to acknowledge the incredible support system my husband and I had with our family and friends. My mom in particular helped me through the tough days when I found out about my uterus, took care of me during pregnancy, and spent weeks with us after the baby was born. It truly takes a village to raise a baby, and I feel so incredibly grateful for the support we had throughout this journey.
