My husband and I married in September 2018 and knew we immediately wanted to start trying to grow our family. We already had annual wellness visits scheduled and requested preconception work up while there. I worked in the medical field so I knew it was important to have all the information up front, especially when it comes to trying to conceive.
After some abnormal testing on both ends, we were referred to a fertility specialist in St. Louis. More testing was completed and a plan of care was put into action.
We finally got our first positive pregnancy test on 10/12/19 after a successful IUI procedure nearly 16 months into our fertility journey.
The first half of my pregnancy was fairly uneventful until I was sent to MFM for chronic in office hypertension paired with our history of infertility treatment putting us into a higher risk category. Our anatomy scan showed no concerns for abnormalities and confirmed that we were welcoming a sweet baby boy, who we named Oliver.
After entering the third trimester, I started having elevated home blood pressure readings and increased lower extremity swelling but all labs were coming back as normal. Oliver was measuring well until 35 weeks, when it showed a sudden drop in his size from the 33rd percentile to the 6th percentile. His fluid levels were steadily declining but he was still passing biophysical profiles and NST’s so they weren’t as concerned.
The Thursday prior to his loss, repeat NST was normal and preeclampsia labs were still within normal limits. Friday came and went like a normal day for us. Oliver wasn’t big on moving much so there was no concerns that his movement patterns had changed. I woke up a few times overnight Friday into Saturday morning and he was still banana’d like he always was.
I finally got up for the day around 7:45 and knew immediately something was wrong. I stumbled through my room and was having significant pain and cramping in my back. I went to use the restroom and started feeling extremely sick when I sat down. I remember turning to the side towards my tub and getting sick. After that, I blacked out for about 45 seconds. When I came to, I remember seeing flashers in my vision.
I got up and woke my husband, telling him we needed to go to the hospital. I went to check my blood pressure which came back above 140’s/90’s. I managed to get back to the bedroom to tell my husband and get changed. As I was walking down the hall into our living room, I leaned up against the wall to avoid from falling and somehow stumbled over to our couch about 10 feet away and slumped over again. I was able to get into the car and attempted to go to the hospital closest to us. They stated since I was a high risk pregnancy, I needed to go to that facility, which was 40 minutes away.
Upon presenting to OBED, they attempted fetal tracing with 2 separate monitor systems and were unsuccessful. A BPP was ordered and came shortly after. The US tech had to keep asking me to move as it was difficult to get the measurements. After a few minutes, he excused himself and stated he was coming right back. He came rushing in with the physician and 2 nurses. My heart sank and I said “I feel like you’re about to tell me something really bad”. The physician just said she was there to review the images.
After holding our breaths, she looked me in the eyes with a sadness I can’t describe and said “I’m so sorry, but your little boy no longer as a heartbeat”. She recommended immediate induction given how I was presenting and she didn’t expect things to be stable enough for us to leave. She then left to give us a few minutes to ourselves to process. This wasn’t something you could prepare for. I had struggled a lot in the first 1/2 of pregnancy with consuming thoughts that something would go wrong but was always met with reassurance that everything was going right. We were a week away from induction, how could this possibly be our reality when I was being seen 2-3x a week?
We were admitted to start the induction process. Nearly 24 hours later, we were blessed to meet our sweet Oliver at 12:49 pm on 5/24/20. He was 4#8oz and 16.5 inches long of perfection. He had a head full of dark curls, just like his daddy. Upon delivery, it was confirmed that placental abruption was the cause of our loss. Pathology of his placenta showed it was severely small (.04th percentile) and shredded, and more than 10% of it had infarcted.
The physician delivered 3 clots the size of or bigger than his placenta, which is why there was no indication of the abruption. I was diagnosed with severe preeclampsia right before delivery which led to us staying in the hospital for about 44 hours after delivery. We were fortunate enough to still have Oliver in the room with us in a cuddle cot our whole stay.
The labor and delivery team contacted On Angels’ Wings, a local non profit that offers photography services to medically fragile children or in our situation, loss. They arrived after delivery and were able to provide us with the only images as a family we would ever get. The hospital staff was great and provided us with a keepsake box that had items such as a necklace they made, prints of his hands and feet, clipped curls, and most precious of all was a clay mold of his feet.
A few days after discharging from labor and delivery, I developed a slight cramping pain in my leg that progressed to the point of barely being able to walk. I called my OB’s office after the weekend and was set up with an ultrasound to check for clots. The ultrasound tech couldn’t allow me to leave as all the veins from my knee to my ankle were clotted off in my right leg. My OB contacted my primary care who saw me immediately. My vitals had significantly changed between the two offices so I was sent to the ER, where it was confirmed I had large bilateral pulmonary embolisms, the one on the left nearly occlusive or completely blocking. This led to a 5 day inpatient stay, where it was later determined that part of my lung had infarcted from lack of blood flow/oxygen.
In between doctors appointments for postpartum checks and my clotting episode, we got word that Oliver’s genetic testing came back with abnormalities and we would need to get tested. My physician’s also completed multiple work ups for disorders that could have contributed to our loss and the amount of clotting that I presented with and came up without answers.
After looking further into my history, it’s believed I had COVID in February 2020 and everything that occurred was likely a delayed complication. A few weeks later, our genetic testing results came in. We met with our high risk team to go over the results and schedule a meeting with a genetic counselor. According to the genetic counselor, we had broken the system.
Oliver’s abnormality was different from the abnormality that came back on my husband’s screening, which is something they’ve not seen before. While my husband’s was a balanced translocation, meaning equal parts of genetic material switched places, Oliver had a microdeletion and microduplication within his 5th chromosome. His body had recognized part of his genetic material had been deleted and tried to replicate it, but duplicated the wrong section of material. This was also something rare that there isn’t a lot of research on but it was determined if he had lived, Oliver would have likely had a lot of deficits along with having issues with intellectual/developmental delays, behavioral issues, and heart complications among other things. Given this information and all the complications we faced, we were asked to wait a year until trying to conceive should we decide that was the route for us.
In April of 2021, we met with our local fertility team and decided to start medications in preparation for trying to conceive. We had failed cycles in June and the beginning of July but had a positive pregnancy test by mid August. We were happy to be pregnant again but of course terrified of all the things that could go wrong. It didn’t take long for us to start having complications. At 6 weeks, I woke up to bleeding. I went to the ER and was told that I had a subchorionic hematoma and my baby’s heart rate was on the lower side, so things didn’t look promising.
It was confirmed at 6 weeks 4 days that I was in the process of miscarrying. I woke up early the next morning to extreme discomfort and excruciating pain. After about an hour, I told my husband I wasn’t sure how much longer I could take just sitting there waiting for it to happen. We discussed going to the hospital and immediately after deciding, the pain started to decrease. I was passing our baby and felt immediate physical relief. The grief that followed was heavy, but nowhere near what we were faced with when we lost Oliver.
We had already discussed that we felt we could move on with treatment if we were faced with an early loss. After much discussion with each other and our medical team, we decided we still wanted to try. Luckily, the next month, we conceived again.
This pregnancy hasn’t been without it’s complications. If you know me at this point, you know the term normal pregnancy and Brandalyn don’t seem to mesh well.
We had early ultrasounds at 6 weeks and 9 weeks to confirm pregnancy viability. Towards the end of my first trimester, I was having issues with generalized weakness and dizziness. All workup was negative for any concerns but they still couldn’t figure out what the cause was.
At 13 weeks, I woke up with abdominal/pelvic pain and went to the ER. I had some irregularities on the placenta, including placenta lakes, or pockets of blood. The next weekend, I was diagnosed with COVID. This started the road to being seen every other week between my OB and high risk specialist. Our anatomy scan was shortly after my COVID diagnoses and showed a healthy baby girl.
With what was known about Oliver’s placenta and what havoc COVID can wreck on a placenta, we requested EPV monitoring. This monitoring was created by Dr. Harvey Kliman at Yale and would provide measurements to give an estimated placenta volume to see how it is trending. If this testing was standardized, we would have known Oliver’s placenta was abnormally small and likely could have resulted in delivery prior to losing him. We are currently 35 weeks, due 7/15/22, which happens to be my birthday, and being monitored 3 times a week. We are counting down the days until we get to meet our sweet Kinzlee. Due to our long list of risk factors, this should be by mid-late June.
I came across Project Finding Your Rainbow through a post from On Angels’ Wings featuring another recipient who utilized services for her maternity pictures and knew I wanted to participate if possible. We weren’t able to get maternity pictures with Oliver due to the onset of COVID so I know this will only make it that more special.
Photos taken by On Angels’ Wings.
On Angels’ Wings is a Missouri non-profit organization that seeks to improve the mental health and wellness of families with medically fragile children (regardless of race, ethnicity, class status or orientation) through therapeutic photography and grief recovery services.
Find out more about Project Finding Your Rainbow.
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