A year ago, at 8 weeks old my daughter was life flighted to the closest children’s hospital in our area. Upon admission to the ER, we were informed she was in severe septic shock and required transfusions before even taking off. This REALLY shocked me because I had been at our pediatrician with her THREE TIMES that week. They told me it was (and I quote) “just a frog in her throat” and it would pass. Mama called bullshit and took her to the hospital. That decision saved her life.
She was dying and we didnt know why. During this hospitalization, after so many IVs and PICC lines, intubation and testing (6 weeks of these things actually) we were informed that our baby girl has cystic fibrosis on top of having been born with down syndrome. I was told that this was a 1 in 1.2 million diagnoses and they didnt have much information for me, but to not expect much after 6 months.
Also during this stay, I noticed my daughter was making some unusual movement which the doctors claimed were “typical baby quirks”. No. They weren’t. For the next few weeks, I asked every single doctor and nurse if they could do an EEG, and finally some testosterone driven physician said “just order the EEG to shut her up”. They set her all up one night, covered her perfect little head with teeny little electrodes then wrapped it in like a gauze. There was a monitor and a button for me to hit when I noticed anything. That was one of the longer nights of my life. Two days later, the neurologist called the floor and told them she would be up with our results. The same neanderthal doctor who ordered the test to “shut me up” came in the room to hear the results. The neurologist squatted down next to me and said “first of all mama, I wanna congratulate you on being such a powerful advocate for your baby. You were right. The test show abnormalities in her brain waves. We will be starting her on medication today”. That other doctor dropped his head and walked out of the room. Asshole. Never doubt the mama instincts”
My initial thoughts were “how the hell did you miss any of this on an amnio?!” Which I had at 20 weeks pregnant after a genetic screen determined she had a high probability of having down syndrome. Not only that, but she had a false negative on her newborn screen for CF, DESPITE having been admitted to the NICU with a diagnosis that is NUMBER ONE on the list of red flags for CF in newborns. It was still overlooked. Had ANYONE followed protocol or even just paid attention, she may have been spared all of this insanity. My next thought was “how do we help her?!” And so began the next stage of our journey. Through all of this I learned that a) my baby girl is the strongest, most resilient person I have ever met, and b) I am apparently a close second
Maven of Mess 