It feels like a lifetime ago that we found out about our oligohydramnios diagnosis, but as I write this blog post it was really less than two weeks ago. I feel it’s important to share our pregnancy journey, how we got to this point, and what we did along the way. It’s a bit cathartic for me to write out what lead up to the worst day of my life. In my own Google journey over the last two weeks, stories of pregnancies with my same diagnosis that resulted in a healthy baby have provided me with hope, and stories of babies who didn’t make it kept me grounded in reality, but both the happy and sad outcomes made me feel less alone. I’m hoping this blog someday will be found by another family going through a similar experience and provide them the hope and comfort I was so desperately seeking.

In October 2022, my partner John, and I found out we were expecting. It came as a bit of a shock as it was our first cycle of actually “trying” to get pregnant, however we were both overcome with joy nonetheless. We elected to receive all of our pregnancy care at OHSU teaching hospital local to where we live in Portland, OR. At our first appointment we found out our due date was July 13, 2023, and our pregnancy looked extremely healthy and was classified as “low-risk”. We advised our OB/GYN that we wanted to explore options of NIPT [non-invasive prenatal testing] testing so we would be prepared to ensure we were able to have as healthy of a pregnancy and baby as possible.

At 13+5 we had our second ultrasound which was the NT [nuchal translucency] scan related to the NIPT testing. The ultrasound was great, my fluid levels were normal, and we had amazing photos of our baby including a little wave of a hand. We also decided to opt for genetic carrier screening in addition to the NIPT to make sure neither my partner nor I had any genetic abnormalities we were unknowingly passing on to our baby. Our NIPT test and carrier screening both came back with flying colors and we found out we were having a baby girl! Immediately, I couldn’t stop myself from shopping for everything pink and bows. We started discussing names, nursery themes, and planning our future with our baby.

My pregnancy continued on as normal until I reached 19+2, when I started experiencing some weird pains which I assumed was round ligament pain I had read all about. I woke up that morning feeling a bit off but figured what I was experiencing was fine and continued on with my day. By that night, I was experiencing extremely painful contractions which were timed which made me worry. I called our hospital’s L&D to find out if I should come in, and was advised it is more than likely Braxton Hick’s, however if I have any fluid leaking or blood to call back. Moments after hanging up the phone, I went and used the bathroom and I noticed blood. After calling back to L&D, we were instructed to come in right away. We made the drive from our home in Oregon City to OHSU to see what was going on.

When I arrived, we were placed in a L&D triage room and waited for the nurse and on-call OB/GYN to come see us. My vitals all looked normal, however due to the contractions I was experiencing the doctor wanted to do a speculum exam to measure my cervix. My cervix measured long at 5cm and there was no fluid that could be identified at that time. After locating baby’s heartbeat with the Doppler, I was sent home with instructions to come back if contractions worsened or I had continued fluid/blood loss. I continued experiencing contractions at home for the next three days up until my anatomy scan that was the following Tuesday. To this day the doctors on our care team still don’t understand why the doctor on staff didn’t do an ultrasound, because knowing what my fluid level was at that time would be very beneficial knowing what we know now.

Three days later at 19+5, John and I went back to the hospital for my routine 20 week anatomy scan. We were both really excited to see our little girl again and were anxious to be told how perfect and healthy she was, as well as get those adorable side profile pictures. Unfortunately, that is not what happened. What started out as a normal and routine ultrasound ended with our tech leaving the room and advising a doctor would be in shortly. John and I were kind of confused as to if this was normal or not and waited. Then a doctor came in and sat next to me on the ultrasound bed and told me we were being sent to L&D because our baby has oligohydramnios, which is extremely low fluid. I was in a state of shock and didn’t know what this meant – was my baby going to live?

John and I walked over to L&D as quickly as we could. I felt like on the walk over I was going to hyperventilate and couldn’t get there fast enough. We had just been to L&D a few days prior and how could it be we were here again and this early? When we got to the nurse’s station I was so hysterical…all I could get out was, “We were sent here from our ultrasound because there is something wrong with my baby.” John then took over and explained who we were, why we were there, and we were then placed in delivery room 8 (probably a detail I will never forget). All I could think about is why was I in a delivery room when I’m only halfway through my pregnancy? I sat on the bed and our nurse came in to introduce herself and we waited on the doctors to come and tell us what was next. Directly across from the bed I was sitting in was the warmer they use when babies are born – I kept looking at it and thinking “why is that in here when I’m not going home with a baby today”.

Eventually two perinatologists [also commonly referred to as Maternal Fetal Medicine doctors, or MFM] came in to our room to tell us more about what was going on. I was told at that moment I have oligohydramnios, which means my amniotic fluid is extremely low, measuring in my case at 1.5cm. Oligohydramnios classifies fluid measuring <5cm, so at 1.5cm not only was my fluid low, it was almost non-existent [referred to as anhydramnios]. This condition is very rare and is seen in only ~4% of pregnancies. We were then told the prognosis for our baby was grim at best and with low fluid she may be born with renal failure, non-functioning kidneys, pulmonary hypoplasia [where baby’s lungs have not developed enough to breathe on their own], and microcephaly. The ultrasound measured our baby’s limbs in the 40th percentile and her head in the 1st percentile, and she was only 9oz which was behind for her gestational age. The doctors started to talk to us next about termination options and reinforced that in the state of Oregon terminations are legal through the third trimester of pregnancy. We were told about our options being a D&E [I won’t go into detail on this one due to how morbid it is] and termination by forced induction [where the baby’s heart rate is stopped with an injection similar to what is used to euthanize animals and then labor is induced following].

Sitting in this hospital bed hearing what we thought were our only options for our baby was heartbreaking to say the least. I could barely look at John because to see the pain on his face was something I could hardly bear. Our OB/GYN then came in and hugged us both and told us how sorry she was that we were in this position. All three of the doctors and the nurse stood staring at us waiting on us to make our decision as to when we wanted to start this process, and if I wanted to have my baby removed from my uterus in pieces or if my preference was to give birth to a dead baby [sorry for being blunt, but that is how it was presented to us]. We asked the medical staff to leave the room so we could be alone for a bit and be together while we absorbed this news. How did we wake up like this was a normal Tuesday morning and then only a few short hours later we are having to make a decision on how to end this wanted pregnancy?

John and I both felt we needed to go home and spend time thinking this over. The doctors did advise us if we wanted to continue the pregnancy that was an option also, however the outcome was not in our favor and our baby would most likely die immediately after birth. We drove home and grieved that night and texted our family to let them know what was going on. After sleeping on it and discussing things further as a family, we decided that termination was not right for us and we wanted to explore continuing the pregnancy and what that looked like. I reached out to my doctor on Wednesday morning, and she put in a referral for us with the Fetal Therapy Team at OHSU. We had no idea if this would be in vain, but we knew we couldn’t give up on our little girl and owed it to her to give her a fighting chance at life.

Terminating for medical reasons, commonly referred to as TFMR, is something John and I had discussed before at length. We did NIPT testing and carrier screening because we wanted to be sure we were bringing a healthy child into the world. Neither of us wanted to bring a child into the world with disabilities, challenges, or a quality of life we wouldn’t have wanted for ourselves, not just as human beings but also as the caretaker of that human. One thing I have learned with this experience is it is very easy to say, “yes, I would absolutely TFMR no matter what”, but it is another very different experience to make that decision when it is staring you in the face.