I wanted to leave this here in case someone finds themselves trying to wrap their heads around this rare brain anomaly…I will be deleting the app for awhile after I post this.

About two weeks ago, we were driving to our anatomy scan and I was so excited since my fiancé hadn’t been allowed to most of my appointments (COVID restrictions). We saw our daughter wiggling and her cute little feet. The ultrasound tech got quiet after looking at our baby’s brain very closely and left the room. My fiancé was sent back to the waiting area while I was quickly brought to an examination room to meet with my doctor. As I approached the examination room, I saw the ultrasound tech having a discussion with my doctor and my stomach tied up in knots…

“We found some abnormalities in her brain and we’re not sure what they mean yet”. My miracle baby, the one we’ve been so excited to meet in just four months, had a mysterious abnormality they couldn’t explain or describe.

Maybe she just has an extraordinary brain, I thought.

We were sent to MFM that same day for a more in-depth ultrasound where the doctor told us that our daughter would likely have serious neurological issues. The ventricles in her brain were more than double the size they should be, the septum was completely absent, she had severe hydrocephalus, the corpus callosum was very thin and may not develop properly due to the size of her ventricles, they were unable to locate her kidneys, and as if those weren’t severe enough, her cerebellum was measuring in the <1% as it had fused and the vermis couldn’t be located.

After a fetal MRI, amnio, and more ultrasounds I’m now 23 weeks and scheduled to terminate since this little Angel baby would have an extremely poor quality of life. We don’t want her to suffer…and she undoubtedly would. The doctors described multiple brain surgeries after she’s born, the likelihood of blood infections since her kidneys may be too small to function properly, she may not be able to walk/talk/eat…thats not a life.

Our hearts are shattered.

I’m broken, angry, and so unsettled that this happened.

My goal is to let anyone who comes across this know that it is extremely rare (1/1,000,000 approx.) and there’s no known cause. Our genetic screening, second trimester blood tests, and amnio offered no explanations. Her DNA, chromosomes, and genes are all perfectly normal. It’s nothing I ate, drank, or was exposed to. Doctors have no idea. There’s only about 42 (now 43 if you include our daughter) known cases of it, ever. The prognosis is different depending on severity. In our case, it’s considered “complete” or “severe”.

If anyone is told that there’s suspicion of this diagnosis, get as many opinions as you can. We got three before I felt more confident in our decision…

Our baby Luna will forever be in our hearts.