Not Another NICU Story
You have all heard the story about the sickly newborn, small and fragile, whisked away from his mother seconds after birth. You have read about the gripping fear, and the sometimes fateful reality that follows along the impossibly ill infant to the NICU. We were not that family.
At no point in my labor and my son’s birth did I think, “this is going to end badly"; not when my body began releasing large clots, not when I was too dizzy to stand, and not even when my placenta clung to the inside of my uterus. I had spent my entire pregnancy bedridden, crawling in and out of the emergency room to fill my body after it had rejected even a drop of water. In my mind, I was warranted a smooth delivery. It had to happen because my body had already been through enough. I was steadfast in the belief that my doctors, my midwives, and the hundreds of medical professionals I saw on a weekly basis knew something that I did not. I truly believed that they would do their diligence in ensuring our lives. Isn’t that the point of a professional, to perform a task at the best of their knowledge?
Just a few months before we began trying to conceive, the federal government allowed pregnant women to be covered by health insurance through their “condition.” You see, pregnancy was previously considered a preexisting condition, and was not covered under insurance unless the woman had already been covered prior to her pregnancy. (What a noble act, eh?) I had hyperemesis gravidarum, a rare illness affecting less than 200,000 women, which often ends in low birth weight, miscarriage, and even death of the carrying mother. Yet here I was, fortunate enough to be completely covered by my insurance, and still not receiving adequate care. I was treated as though my bodies behaviors were unacceptable, and were something I could control with certain actions. The truth is that women die from HG due to mistreatment and misinformation.
It was not until a year and a half later that I have finally realized how truly terrified I should have been for mine and my unborn son’s lives. Last month my husband and I listened to Jimmy Kimmel talk about his family’s trauma after his son was born with a rare heart defect. (Link) While Kimmel's crackling voice echoed in my ears, and a boulder settled in my gut, it struck me that he was talking about me. I gave birth to that newborn with fluid in his lungs - a usually simply resolves by itself, but then--sometimes it doesn’t. For the first three hours of my son’s life, each of us slowly died as he struggled to breathe, and I quietly bled; exhaustion and delirium taking over my senses. At the caution of my sweet husband, the ambulance arrived 3 hours after the birth, and we were taken to Cedars Sinai. I know where we were because I recall the rugged, smoke covered fireman calmly describing the situation to the Cedars telephone operator.
I recall a quiet peace dripping over me as the ambulance bumped over the Los Angeles streets. I held my red faced newborn in my arms, never for a second thinking we would be anything but okay. We were wheeled into the emergency room and after a brief moment of observation, my son was dangled in front of me to be rushed to the NICU. I gave him a quick peck on the cheek, not realizing in my empty state that I may never see him again. After an ultrasound confirmed a softball size clot in my uterus that attempted to further drain me each time I moved, the doctor reached inside my tender body and ripped it out. If labor hadn't killed me, I was certain this pain would.
It didn't take long for my blood work to come back because of my urgent situation, and my world swam around me as the ER doctor averted his gaze. My white blood count was high, which meant I could have a possible infection. According to the staff, my presence would put all NICU babies at risk. It suddenly occurred to me that a piece of me had just been taken away.
I cannot explain to you the intense emotion tied to the knowledge that your delicate newborn is suffering and it his fate is completely out of your control. I cannot further explain the anguish of strangers caring for your newborn when it should be you doing so. With this realization, a deep ache manifested and found a home inside me; even now, it returns as I write.
I could never have comprehended the agony I would feel when each of my visitors would disappear past the nurses station, into the elevator and up one floor up to hold my baby. I laid helplessly in the callous hospital bed, my third transfusion doing diligence to bring me back to life. After three days, although I was now able to sit up, and my white blood count was down, I was told my blood pressure was still too high to make a trip upstairs. Panic overcame any sickness I felt. I channeled it and finally used my voice to stand my ground. I was going upstairs, no matter what anyone said, to hold MY child. It is impossible for me to describe how overcome with emotion I was as my husband rolled my chair through the double doors into the NICU. My heart pounded as I washed my hands twice before even being able to enter the room, and my eyes were dripping before I rolled into the hall.
I am still haunted by the unrecognized wails of the babies around us, crying out for their mothers. I wondered to myself, where are they? At work, sick, alive? Sadly, it is not the emotion and pain that I cannot overcome. I could not and still cannot wrap my mind around the financial burden we now carry for our stay in the ICU, NICU, and PICU, where we were finally reunited and able to be together as we healed. For months we watched our insurance claims hop above $500,000, a price we could never and should never have to even consider for our lives.
I cannot fathom still, the courage and strength of my partner and my mother in law, who washed the laundry, filled prescriptions, cooked food, and did everything possible to make certain that I wouldn't feel more stressed than I already was. I cannot believe still, that while we fought for our lives, our insurance fought to escape every dollar possible and push it onto our struggling family; to nearly put us into bankruptcy, ruin our credit, and leave us forever paying for our health, our life.
Next time you see the story about a struggling NICU family, remember the cost. It is not only emotional, physical, and financial, but it is our livelihood. It is our tax return being taken, our wages being garnished, our comfort being taken for the sake of greed and wealth. Next time you see a NICU story, instead of sending a prayer, send your congressperson a story of financial struggle and hardship, because we will forever be paying, in more ways than one.