Trigger warning: Infant Loss
Whether you’ve just received the devastating news of a miscarriage, suffered a loss in the past, or perhaps you’re worried about how your pregnancy may be impacting your health, emotional well-being, or life in general, I invite you to read my story.
Know that no matter where you are in your journey — you are not alone in your pain and grief. Infant loss is one of the hardest things a family can experience.
Last year, my partner, Tony, and I conceived our daughter, Charlotte.
Little did I know, we’d lose her due to Antiphospholipid Syndrome (APS) complications.
The months of my pregnancy were a joyous time. I had no issues outside of the typical pregnancy aches, pains, and cravings. However, the 20-week ultrasound rocked my world. The maternal-fetal medicine doctor expressed she “had concerns.”
I had no measurable amniotic fluid.
The truth is a lot of doctors tell patients their babies will die when amniotic fluid is gone and that is not true. In fact, it’s so not true that one of my main doctors was mad when I told her what that MFM doctor said. I also had 2 doctors tell me they never advise termination. It’s up to the parents to decide if they can’t handle what’s to come, death or NICU stay.
Dr. Doom didn’t explain where the amniotic fluid had gone, why it was gone, or what’s the solution. She just didn’t see it, “it” being that my daughter’s lungs hadn’t developed to sustain life outside of me.
"Infant loss is one of the hardest things a family can experience."
Lung development is the only thing not seen on an ultrasound so that’s one of the reasons parents wait & see. I’ve read lots of testimonies of babies who survive this and that’s why we chose to wait & see.
We were told at the time of the 20-week appointment, that everything else was functioning. The concern was that she was small due (later learned from APS causing placenta blockage) and had no amniotic fluid. She even moved a lot without it, which we were told she wouldn’t do.
At 26 weeks, I needed an emergency c-section due to severe preeclampsia. My surgery and delivery went well. Charlotte came out kicking with her eyes open. However, once in the NICU, an x-ray confirmed what the doctor had said about her lungs, and our precious daughter lived for two hours, and 16 minutes.
Over the next couple of days, the doctors ran tests to learn why my pregnancy went left. They were concerned I’d be in a rush to leave due to grief, however, I assured them not only did I want any answer possible, but it was comforting to have doctors that cared.
After a few tests, one of my doctors asked if I’d been tested for APS. She told me it could be rare, but it was worth a look. True to her suspicions, I tested positive twice for an APS marker.
APS is a blood clotting disorder that can affect both men and women; of all ages, all ethnicities, famous folks, and regular folks, no one is exempt. It can show up in pregnancy causing multiple miscarriages, stillbirths, or in my case, 2nd, or 3rd-trimester complications. Sadly, for most of us who’ve tested positive, we had no idea there was an issue until after the loss.
Unfortunately, this was not an uncommon experience, but it is one that I needed to share because it’s not talked about enough, and it's cruel that pregnant women aren’t being tested for APS and other clotting disorders as a standard. For those planning for pregnancy, I highly recommend requesting these types of tests.
There are many grim statistics on black maternal health, and while APS is not a Black woman’s issue, we’re often the last to know what’s going on with our health and to have our concerns acknowledged.
That’s why I’ve chosen to share my story with the OMNoire community, to honor Charlotte and raise awareness to save families from the pain of this loss, and to create a safe for us to feel seen, heard, and supported.
Love,
Jennie
