At my 20 week ultrasound, the doctor informed us that our Adlee died a few weeks before at 17 weeks. We were shocked. Here we were thinking we were going to find out the gender of our 20-week old baby, and instead, she had been dead for weeks … or so we all initially thought. Turns out, she was probably 19 weeks…
When I delivered Adlee the doctor told me she was holding her umbilical cord. She had seen some similar occurrences, but nothing exactly like hers. The doctor recommended we get a visual autopsy and genetic testing to help determine the cause of her death. There was the possibility it would remain unexplained, but maybe there would be answers.
Before having Adlee transferred to the morgue we had her sent in for a visual autopsy. We had also sent in a bunch of blood samples from me so we could get genetic testing done. A final report hasn’t been given to us as that can take a couple of months, but we did receive an initial report. My doctor actually called while my husband and I were visiting our little girl to tell us the results.
Genetically, everything looked great. That was relieving for me and my husband. Why? Maybe because it was reassuring to know there wasn’t some unpreventable and unexplainable thing about the way our DNA mixed to create Adlee? And maybe that any genetic complications in a future pregnancy would remain very unlikely.
The doctor then told us that the visual autopsy was the most telling. Pathology said that Adlee died from Amniotic Band Syndrome. Let me explain a little about it, and then I’ll finish telling you what happened …
How does amniotic band syndrome occur?
“According to this theory, amniotic band syndrome occurs when the inner layer (amnion) of the amniotic sac ruptures or tears, exposing the fetus to strands of fibrous tissue that may float freely in the amniotic fluid or remain partially attached to the amniotic sac” (NORD https://rarediseases.org/rare-diseases/amniotic-band-syndrome/)
After talking with my doctor and doing research, they really don’t know what causes this to happen. This can happen when the mother experiences trauma, but in most cases, it is unexplained. It’s pretty much a freak accident and is actually considered a chance event.
What is Amniotic Band Syndrome?
Apparently Amniotic Band Syndrome is a very rare condition. My doctor said that 1 in 80 stillbirths are for this reason.
This rare condition is “caused by strands of the amniotic sac that separate and entangle digits, limbs, or other parts of the fetus. This constriction can cause a variety of problems depending on where strands are located and how tightly they are wrapped” (UCSF https://fetus.ucsf.edu/amniotic-band-syndrome).
Most cases of Amniotic Band Syndrome cut off blood flow to a body part, like fingers, an arm or leg, and other areas of the body. In advanced cases, like if it gets wrapped around the body or umbilical cord, it can lead to fetal death…
And so, our little Adlee died from Amniotic Band Syndrome. The amniotic bands were entangled with her umbilical cord in multiple areas, cutting off blood flow. They were also wrapped around her right fingers, but that would not have caused her to die.
My daughter died due to lack of blood flow. Pathology reported that while she measured at 17 weeks, she was actually developed to 19 weeks. She was measuring smaller because she wasn’t getting enough blood. This meant she died anywhere from one to two weeks before going in for our anatomy ultrasound appointment.
What happened to Adlee is devastating and heartbreaking and I miss her every day. Sometimes I can’t believe she’s gone … but I am grateful this is not the end and that we will get to hold our little Adlee again. I’m also grateful there was a reason, and a reason that most likely won’t be repeated. If it somehow does, I think I’d better enter the lottery.
Picture is titled “Hand in Hand” and painted by Greg Olsen
