Ophelia’s Story
If sharing my baby's story can help save another baby and mother, then I know she would be proud of me and her legacy.
I lost my ability to carry after losing my only child. She was 5lbs 9 oz and 20 inches long at 34 weeks. I almost died twice after I delivered her. Before that my pregnancy was easy, and a real blessing since we had needed to resort to IVF and were struggling to build our family for many years.
The morning after her baby shower, her heartbeat was gone. Presents were everywhere. Breaking the news to my parents was so sad, as we had been living together and arranging the nursery with family heirlooms. After she died, I was encouraged to deliver vaginally. There were no ultrasounds done, between the loss of her heartbeat and my delivery process, to access what was safest.
It turned out I had a placenta accreta (a rare but increasing complication, sometimes dismissed at retained placenta) which caused a life-threatening hemorrhage requiring lifesaving surgeries and blood transfusions. A vaginal birth is extremely dangerous in cases of undiagnosed accreta (1 out of 14 women die). Whether or not the accreta led to my baby's death in utero is still unclear but the autopsy report said that it was fetal vascular malperfusion. It is also unclear whether any genetic screenings were done in the autopsy report.
She looked totally normal, big for her gestation, and came from a genetically tested embryo but I would have liked to know or have the option of doing that! If better scans of the placenta were taken during the anatomy scan, and if I was trained to use a doppler... if I was told that her fierce hiccupping should not be counted as movement, I reckon she would have survived, and I wouldn't have almost died.
There is nothing like losing our baby the day after the baby shower, on our wedding anniversary and then needing to deliver her body on my birthday (the following day) only to then face death myself, twice. After I was released from the hospital, I got a pulmonary embolism. A cord accident is the presumed cause of death as the cord was wrapped 3 or 4 times around her foot. However, I wish that during my high-risk pregnancy, more education, more careful monitoring was done and that the information from my near-miss delivery was kept instead of being purged. Most importantly I believe it is crucial to have pre-delivery scans after the stillbirth as it might provide more clues about what happened and prevent dangerous deliveries.
I believe Ophelia died to save my life. That's how it felt. More importantly though, when I tried to get my records, I was stonewalled, and I think I was flagged by risk management. My care was then terminated after 4 months post-partum while still on meds for the PE! Accreta surgery can cause serious infections and my follow up OB dismissed my pain as "not in his department" before I learned later, from an internist that I had a bladder infection. My OB didn't even think to do a simple urine test to see if I had an infection, while knowing that remnants of the placenta could cause significant damage.
The sad reality is, legal departments take priority over patients' health and proper data collection. This is the biggest challenge I see ahead of us: You can read more about that here: https://www.theexaminernews.com/special-investigation-banned-from-care-stillbirth-mother-recounts-traumatic-termination-from-optum-caremount/
Written by Ophelia’s mother, Rachel Krause