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A Black Family’s Fight for Their Premature Baby’s Life in the NICU

Kamaya Jones | November 22, 2021

The worst thing that could have happened… happened. We were left powerless and could not protect our own baby from a corporation, Ronald Reagan UCLA Medical Center, who cared nothing about our Black baby’s body.

A few months ago, I had to give birth to my baby at 32 weeks and 2 days due to some complications that had arisen within my own body. Most parents of NICU babies will tell you that having a baby in NICU is one of the hardest things because you have to trust that that baby is going to be safe when you leave. Looking at your baby who is helpless, powerless, unable to speak, and unable to protect themselves and not being able to be there with them 24/7 is already painful.  But walk with me here and imagine that pain, and then imagine that one day when you go to visit your baby in the NICU, your baby is not there. The nurse responds, “Oh, he’s not here…,” and when you ask where he is, they tell you that he was “discharged to another department and another floor”, unbeknownst to you. Well, that is what happened to us. Unfortunately, that is where the story begins, and not where it ends.

Not only were we not given any opportunity to participate in the decisions around our son’s care, but we were not even told at any point that they were even considering moving him. In fact, his medical records from that same day showed that the doctor in charge of the NICU recommended that he stay and continue to be monitored. However, somewhere between her note, and around noon when we arrived, our three-week-old son had been discharged and left alone in an unattended room on another floor… and no one told us.

Our three-week-old, three-and-a-half-pound baby had been moved to Pediatrics because the NICU was overcrowded and they wanted to move out the babies who were supposedly the least critical. Our baby needed to grow and was suffering from bradycardias, but had not had an episode that was significant in 24 hours, so they quickly hurried him out of the NICU. Mind you, 24 hours should not be any gauge for whether a premature baby, or anyone for that matter, is out of the clear for a health issue like this. He was not ready to be moved. He was moved because they were overcrowded, and because he was a little Black baby boy. “What could this little Black boy’s family know about hospitals and safety,” they assumed, and proceeded to put him downstairs in pediatrics. To add to our misfortune, he was not placed into the Pediatrics Ward that actually had familiarity dealing with infants or premature babies, but was instead placed in the ward that specialized in children with various cancers. This lack of familiarity and experience was evident in their treatment of our baby that followed.

The next egregious error that occurred was when we went to find our baby who had been discharged from the NICU and moved to another ward unbeknownst to us and found him in a room alone with outside adults from the street – and NO hospital staff. How was this allowed to happen in general, and especially during COVID? Our three-and-a-half-pound baby was placed in a shared room with another baby whose family was there visiting their baby at the time. No big deal, right? Except, imagine that being your baby, tiny, helpless, and in a room unattended by any hospital staff with adults who were simply visitors from the street? So not only were we not told that our baby was being discharged and moved, but our baby was unsafely moved to an unattended room with outside adults. Prior to this when we asked the nurses and doctor to explain the difference between being in Pediatrics and the NICU, we were told that the care partner checked in on the room every hour and was always available, while the nurses would check in every 2 to 3 hours. We were uncomfortable with this, but still trying to truly understand what was happening, since we had literally just come to visit our baby in the NICU, which was attended 24 hours, and were being scrambled to a whole different place and scenario. It took a while for this to click for us.

After visiting the Pediatrics ward, we went upstairs to talk to the resident doctor on call in the NICU to get a better understanding of why he had been moved. At this time, we still didn’t understand that our baby was going to be unattended by any nurses in that room with adults and assumed that similar to the NICU, there was going to be a nurse in and out of the room regularly. Had we known this was not the case, we would not have even left to go and talk to this doctor who was on call at the time. We returned home to gather some belongings and unpack, and as we returned to the hospital, the nightmare continued to unfold.

When we walk into our child’s shared room later that day, we see the care partner, Freddie, who is in the process of feeding him. My husband notices our three-and-a-half-pound baby’s diaper is too small – our baby’s size was P1, and he was wearing a P3 diaper. P3 diapers are for babies under 1 kg, and our baby at this time is about 1.5kg. Needless to say, the diaper does not fit, is uncomfortable, and is tightly squeezed onto our baby’s body preventing proper circulation to his legs. He is very clearly uncomfortable. When my husband remarks about why they would put a diaper on him this size, the Care Partner retorts that that was the one that he saw so that’s what he put on him. How could a Care Partner in charge of a newborn infant not be able to recognize when a diaper is half the size of that baby’s bottom? Well, this Care Partner didn’t recognize that, or didn’t… care. Ironic.

Following, we noticed that our baby’s monitors were continuously beeping because they were programmed for older kids, meaning that our baby’s heart rate and breathing were sending the monitor off because it represented the rhythms and pace of an infant and not of a toddler or adolescent. Not understanding the issue with the monitors that we had pointed out, the care partner assumed that something was wrong with the baby’s leads that were sticking to his body. The leads do often present a problem because they’ll move around, but in this case, the real problem was that the monitors kept beeping because they were set to go off at a lower number than what was normal for an infant. That said, the Care Partner attempted to change the leads, and replug them back into the monitor. Unfortunately, he did not know which lead plugged into which box, and he did it wrong several times. The charge nurse, Rabia, then showed up and told him to use stronger leads. These leads stick very strongly on the skin and are used for bigger babies and toddlers. Tender baby skin is not the best for these stickier leads, as it’s soft and sensitive and still growing. But because they were not used to dealing with infants, and apparently did not know this, they proceeded with these leads. The Care Partner then stuck these extremely sticky leads directly onto both of my baby’s nipples. Imagine a sticky lead being stuck directly onto your grown-up adult nipple and the amount of pain that would ensue, and then picture that happening to a 3-week-old three and a half pound baby… because that is what happened to our baby.

I watched my baby scream in pain as the Care Partner then tried to remove the leads because he still could not get them to work. This is a reminder that they were not working because he was sticking them into the wrong monitors, and not because the leads themselves were “broken.” So not only did he not know not to directly put sticky strong leads onto an infant’s nipples, but he didn’t actually know how to plug them in. In his haste of trying to remove the leads once again because he thought they didn’t work, he rips one off of my baby’s nipple, and my baby begins to yell. As a solution, he grabs a bottle of DETACHOL, an adhesive remover used to remove dressings, tapes, and most sticky residue from the skin, and proceeds to pour half of the bottle directly onto my baby’s skin. The instructions call for DROPS. Me, not knowing what the solution was, and trusting that if Freddy is in charge of my baby’s care and is coming with the solution that he knows how to use it, did not say anything as I watched this happen. I was trusting the Care Partner to provide the care and service that he was hired and trained to provide. However, I should never have trusted Ronald Reagan UCLA Medical Center/Mattel Children’s Hospital with the care of my child. As we removed that final lead and dressed my baby to eat, I thought the day could not get any worse. However, after eating, my little baby was inconsolable and cried for 45 minutes. When my husband returned to the room, I asked him to help me change his diaper to see if that was the issue, and that is when we noticed that that solution that the Care Partner used had burned the entire left side of my baby’s body from his shoulder passed his torso down to his hip, front and back of the body.

At this point in the day, several hours have gone by and not ONE nurse has come to enter the room or check on us yet. As I start to undress him, my baby begins screaming at the top of his lungs and a nurse finally walks by and peeks her head in to see if everything is okay. I say no because I don’t understand why he’s screaming (although now I know that it was because I was touching his clothes and irritating his body), and that’s when I begin to take off his clothes and notice the burn all over my baby’s body. The nurse then says she’s going to call the doctor as she runs out of the room. Shortly after, Rabia the charge nurse comes to the room, as well as the care partner and the nurse who was on staff at the time, and she begins wiping his skin to ensure that all of the solution is off – this is a little too late. In fact, the nurse asked me if “they” didn’t wipe it off after they put it on, to which I responded “I don’t know who “they” is if “they” are not you since you are the nurse. If you did not wipe it off, then it was not done.” So at this point, I’m looking at my baby with his burnt skin and thinking I’ve got to get us the hell out of here. Only I couldn’t. I couldn’t do anything.

The next 24 hours were a bit of a blur. We arrived at the NICU the day before to be told that our baby wasn’t there, to find our baby in a room unattended with strange adults to then have our baby writhing in pain from having leads pulled from his nipples and then being burned and this all happened in a day. I am unable to even imagine the kind of trauma that my baby will suffer for the next few years. If it is anything like the trauma that I am suffering, then it will be grand.

The next day we were moved to Pediatrics on the 5th floor, which was a completely different space, area, and seemingly a completely different hospital. On that floor, they were used to dealing with infants and were well equipped to deal with our baby, but the damage had already been done. We had already lost all trust and confidence in the hospital and in the staff, and still have not regained that. After 3 days in pediatrics on the 5th floor, imagine our lack of surprise when our baby was returned to the NICU for the same problem that he had not overcome when he was moved. He continued to have bradycardia, abnormally slow heart action, and continued to require 24/7 monitoring. He was moved abruptly to Pediatrics in the first place because he was a little Black baby who they assumed did not matter. He was moved abruptly because the NICU was overcrowded and they did not have enough staff to care for the babies in the ward, especially the ones who looked like mine. He was moved abruptly because they thought it was easy to discard our son.

When he suffered bradycardia at about 5:00 a.m. on July 16th, it was because of our resilience and my husband and I sleeping in the hospital that we were able to catch it in time to help him recover his heartbeat and breath. The nurse in Pediatrics was attending to another patient at the time and noted that she had no way of leaving that patient to come and help our son. Were we not there, he would have suffered greatly. About two minutes after the alarms went off, our fabulous Care Partner, Valentina, came into the room to check on him, but when it comes to bradycardias, a minute can be too late, and she arrived about 2 minutes after the incident occurred.

It was because of the nurse that our son was able to return to the NICU. She herself had to repeatedly tell the doctor that there was no way for nurses in Pediatrics to be able to attend to babies who require more monitoring and who might enter emergency situations because they are not staffed in that way. Dr. Cheema, the doctor on staff over Pediatrics – the same one who tried to convince us that he was “safe,” despite that being an untruth – attempted to argue the point that there would always be someone there and available. Thankfully, the nurse told her in front of us that she was actually that person, and that she was not available at the moment; she shared that by the time another person would have come in to cover for her, it would have been too late. It was only after asking many times how he would be taken care of if this happened again that Dr. Cheema concurred that he needed to return to the NICU because of his condition. But she was honestly much happier keeping him unsafely in Pediatrics to try to prove herself right.

I can’t help but relive this experience EVERY SINGLE DAY, and as I do so, thinking that this would never have happened if my baby wasn’t a little Black boy with Black parents who looked young and easy to discard. I feel for all Black parents who enter into these hospital systems and have to trust people who they know don’t give a damn about them or their children. Were we not the resilient people we are, we may have been walking out of there without a baby, and without an opportunity to make sure that the hospital and everyone else knows that they are culpable. But we are who we are and we are grateful for that.

I write this because I want it to be known how this hospital treats “us,” despite boasting that they are NUMBER THREE IN THE NATION everywhere that you go. Regardless of that, there are people on their staff who have no regard for our lives and our children and our children’s lives.

Kamaya Jones, mom of a beautiful little baby who decided to come early, but right on time. Kamaya Jones is a researcher and strategist by profession, people coach by passion, and developmental psychologist by training. In her past life, she was an actor/dancer who performed with Mariah Carey, Will Smith, and Missy Elliot to name a few. In addition to her research and dance experience, she has a steep background in film and television production, creative writing, and yoga. Kamaya earned her doctoral degree in Comparative Human Development at the University of Chicago, and has led various courses in media, language, and culture as an adjunct professor. Her research interests are: urban youth culture and digital media, digital access and psychosocial development, and teacher-student relationships in urban secondary schools. She also continues to teach yoga, and explore how movement encourages critical thinking.

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