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I believe that our daughter didn’t have to die   — Whitley Coggins, PA, USA

What’s most important to me is that everyone knows her like I do; To know that she is real, she was here in my arms. If her death goes unnoticed and other women don’t have the chance to read our story and learn from our heartbreak, then there is no justice. I was beyond excited to find out we were having a baby girl. We have a son, he was 2 when I got pregnant and he was going to just be 3 when his little sister came. Our perfect little family, the 4 of us. I was not ready to actually “say” we were done having kids but I sort of felt it. Anyway, I bought ALL of her clothes, all the way up to 2T, before anyone even had a chance to. Her closet and dresser are over full! Everything is washed and hung up in outfits so that it would be easy for my husband to pick things out, he wouldn’t have to find the pants or leggings in another location; Everything is on one hanger. Her room is beautiful; purples and blues and pinks. Not too bold but simple and feminine. I decorated and made colored tassels myself. It is truly a special room. Crib built, camera set up, we were ready. At 35 weeks I was given a Group B Streptococcus (GBS) swab test in my OB’s office. She wasn’t going to do it because typically it is done at 36 weeks but my son was early and she thought it would be smarter to do it at 35 weeks. There was no further of a conversation about it. She didn’t explain why they tested for it, what GBS is or what it can do, the conversation ended and I felt like this was just ‘something they do.’ This was 12 days before Bailey was born and I was not tested again after that. My test came back negative for GBS. What I’ve since learned about GBS is that you can have a negative test one day and be positive the next. Because Colton came unexpectedly early WE WERE REALLY READY. We knew there was a chance she would be early too. I had weekly Makena injections to help keep her in as long as possible but she still wanted to make her appearance early, at 36 weeks. Thursday morning, 1/30/20, at 6:30am. My water broke in the kitchen. I continued to make my husband his breakfast and lunch and I sent him to work. I called the doctor, got my son dressed, dropped him off at his grandmother’s house and I headed to the hospital. I told my husband I would call him when he needed to leave work since he works in the same town as the hospital. It took, what seemed like, forever for them to test the fluid I was leaking to confirm my water was broke. I was placed on fetal monitors and my contractions were like mild cramps, nothing really intense or labor-like. I spoke to my nurse and explained that I planned to do this all without pain meds or an epidural. She agreed that she would not ask me and she would leave it up to me to request anything but she did explain time limits I had to request such interventions. They gave me Cytotec to try and get my labor moving along. I would get a dose and have to lay in bed with the monitors for a period of time and then I would walk the halls. After, I believe, the 3rd dose it was decided we would change our course. I can’t remember if it was Thursday or Friday but at one point my doctor checked me with his hand and while doing this he scraped my membranes. I wasn’t explained anything about this procedure, we didn’t talk about risks or if I wanted it done or if there were negative affects that I needed to be on the lookout for. He just did it. Friday morning, 1/31/20. They started me on Pitocin. It felt like a freight train had just taken ahold of my body. This baby was coming and she was coming soon. No epidural. No IV pain meds. Nothing. I’m proud to say I did it. My husband and I did it, together. We brought a beautiful 7lb 6.9oz baby girl into this world at 11:04am and we named her Bailey Jean. She was just everything. I was so exhausted but I was just completely in love. Something that didn’t seem to matter at the time but now that I have done my research I know better: For 28hrs and 34min my water was broke. I had experienced what’s called PPROM, ‘preterm premature rupture of the membranes’ and ‘prolonged rupture of the membranes.’ After doing so much research I learned that concerns of infection arise after 18hrs from the time your water breaks. These concerns cause women to be treated with antibiotics which treats the unborn child as well. It is suggested that women receive at least 4hrs of IV antibiotics so that baby has enough time to receive them. I was not given antibiotics or anything for that matter. Actually, my doctor could barely be bothered even to stay in the room while my body was having contractions so strong, I couldn’t NOT push the baby out. The nurse was fighting with him, in front of us, asking him to stay because this baby was coming and he was yelling back that I wasn’t dilated enough. My husband was ready to have it out with him but he reigned it in and focused on me. Sunday 2/2/20 Bailey failed her bilirubin tests (Jaundice) but the nurse said she wanted to release us anyway. She said something like “I’m going to go ahead and ask if you can be released anyway.” We were released from the hospital but told we had to come back to the hospital tomorrow to get Bailey tested for another test again. We were just excited that we got to take our baby home! Monday 2/3/20 We showed up at the hospital for the test and were taken all over the place until someone finally figured out that the nurse yesterday was mistaken and that we needed to go to another facility, off site, to get this test done. We packed Bailey up again and went to this other building and she was given a heel prick. We left to stop by my in-laws house and received a call while there. They said Bailey had failed the test again so we were asked to come back to the hospital to be admitted to the pediatrics unit for at least one overnight stay under the phototherapy lights. The doctor explained that they would have her under the lights for a period of time and then test her. She said they would do this twice and then the following day they would do a “bounce back” test. For this Bailey would not be under the phototherapy lights for a period of time and then have another test. If her numbers were where they needed to be, she could go home. They were also weighing her diapers to ensure I was feeding her enough. Tuesday 2/4/20 The doctor explained that her numbers were so good that we would be released and she didn’t need to have the “bounce-back” test done. We packed up and took our baby home, again! Note about Bailey and my mental state when caring for an infant: My son was an early baby, too. He never woke up to eat and always had to be re-woken up in the middle of eating so to me, this is all I know as “normal.” I’ve never experienced anything else with an infant. Bailey was this way. She NEVER woke to be fed, I always woke her up. She would often fall asleep while I was feeding her and I’d have to wake her again. Many times she would refuse to eat and I would pump what she didn’t eat and give her a bottle of breast milk. She seemed to take that and I believe it’s because it flowed with little effort on her part. Wednesday 2/5/20 Bailey still wouldn’t wake to eat. I was getting something in her so I thought we were still on a good path. Thursday night, 2/6/20 She just would not wake to eat. She had no interest in waking up at all. We were scheduled for our first appointment with the pediatrician in the morning so I called them to ask if I should be worried. The nurse said as long as she didn’t have a fever, we were ok and didn’t need to take her to a hospital or anything. She said we could wait it out through the night and come into the office in the morning. Not eating + fever was what I was told to look for. I hung up and looked for my thermometer which I couldn’t find. I called our neighbor and she brought me a thermometer and I got 2 temps. 97F under the arm. I had never taken a rectal temp before so I googled “how to” and got 94F. The 94F seemed odd to me but because I got 97F which is a normal temp and none of them were “fever” temps, I didn’t rush us into the hospital. As time went on though, we both started to worry because she JUST WOULD NOT WAKE UP. We finally decided to take her to the ER. As we sat there In the waiting room I was convinced that the doctors would say I was just worrying too much and send us home. I thought my husband was going to be so mad at me for making us go to the hospital AGAIN. Then were taken in and everything just went down hill so fast. The first woman we saw took her weight and temp. She asked me if I thought Bailey looked yellow and I said I thought she looked a little yellow and told her that we were just here for phototherapy. She then asked me about the temps I got. I told her I got a 97F and a 94F and her response was: Hypothermia. Right then I realized I was looking for the wrong thing! I was looking for a fever, a high temperature, not a low temperature. I didn’t even know what temp was considered “hypothermia.” The ER visit is still a blur. Bailey had so many attempts done of her to get an IV in. I carried her to another room for an X-ray. Then the doctor explained she wanted to do a lumbar puncture or spinal tap. She said there were risks and gave me a paper to sign and then I had to leave the room during the procedure. What I can clearly remember was hearing the doctor say that the spinal fluid they got from her lumbar puncture was supposed to be clear. When I re-entered the room I saw it; It was sitting on the table in little vials. It was the color of the ink of a yellow highlighter; cloudy and bright. They started antibiotics while we waited for news of the test. I had no idea what the yellow fluid could mean but I certainly didn’t imagine what was about to happen. I don’t remember the timeline exactly but at some point the doctor was asking me about my labor. What time did my water break? How long was it broken? Did I receive antibiotics? It was all becoming quite overwhelming and I now understood she was afraid Bailey had something terrible. At this point the doctors were telling me that she needed to go to an ICU. I thought how fortunate it was that this hospital has a NICU. Have you ever heard of a “Closed NICU?” I haven’t. It means that once you are released from the hospital after birth, you cannot be readmitted there. They do that to protect the babies in the NICU from outside germs and infections. This was a Closed NICU at Chester County Hospital. Bailey had already been released from this hospital twice by this point so the NICU here was not an option for us. They asked us which hospital we wanted to be transferred to, the one 45min away or the one over an hour away. I only knew that I didn’t want our baby to have to travel too far so we picked the closer option, A. I. DuPont Children’s Hospital in Delaware. My husband left to take our son to his mother’s house and I stayed with Bailey. Before we were transferred Bailey started having trouble breathing, and next thing I know we were rushed into another area of the ER. They were shoving beds and equipment out of the way. There were so many doctors and now our infant had a tube down her throat. Someone was trying to explain things to us and the only thing I remember hearing was the word MENINGITIS. I had heard of meningitis before but I had never done any research so this wasn’t something I knew anything about. They said she would likely be in the hospital for a long stay to be treated for this. I called my mother over and over and over again. I called my dad’s phone. It was the middle of the night, no kidding no one was answering but I needed to tell them, I just needed to tell my mom that my baby was in trouble. She finally answered and I was just a mess trying to explain. I don’t even know what I said. We stood there in horror as a transport team moved our baby into a plastic box on a rolling bed. Hooked up to EVERYTHING. They told me I could ride with her in the ambulance and my husband could follow us in our car. When I say all of this is a blur, I really mean it. It seems like this all couldn’t have happened. I’m still having trouble believing it’s real. Friday, 2/7/20 Sometime before 9am. The day EVERYTHING changed. I was in the back of the room, I felt like stone. 4 doctors came back to me and started asking me questions about Bailey and about my labor and the length of time my water was broke.. When the questions about my labor came up I asked about the antibiotics and explained that the other doctor was asking me the same questions. Why was everyone concerned about this? Should I have gotten them? My husband and I were told that our daughter needed a central line. They said the room had to be sterile so we had to leave the room our baby was in so that they could do the procedure right there. We were moved to a waiting room down the hall. They said it would be about an hour. The social worker showed up. It isn’t her fault really, the way I felt toward her. I hated her. I hated her soft tone and I hated that she wanted to help. I hated that she was assigned to us because in my head we weren’t a case in need of a social worker. Our daughter was going to get better and we were going to take her home again. Enter: Dr. Nick. I remember him so well. His face and his careful way he explained and answered our questions, not like he was trying to make sure he didn’t say something wrong but more like he wanted to use the right words so that we could understand what was happening. He was coming to give us an update or new information or both(?) His words were so precise. Bailey’s. Heart. Had. Stopped. They resuscitated her but our baby’s heart had stopped. What? All of these doctors were supposed to be telling me that I was being silly. That we could take our baby home and just keep waking her up to eat and she would eventually get better at it. After all, she was early like her brother. He explained the she was still on a ventilator, had IV antibiotics, a central line with heart meds and pain meds and I’m sure he said other things that I can’t remember. Our baby was hooked up to everything. I asked him if I had received the antibiotics, would she have had a chance. He was reluctant but responded “it is possible.” I asked him to save her like she was his. I made him promise he would do everything! He said she was a very sick child and that we were looking at a very long stay, probably 21 days. I left the room. I had to get away. I needed my mother. I went into a room covered in windows. Outside was some kind of garden with a walkway. I called my mom. I got out whatever words I could though I don’t think I really formed full sentences. Our baby’s heart stopped. This was serious. I didn’t know if she was dying or if she was going to be ok. We didn’t know anything else. The social worker came and got me. I got off the phone and went back into the room my husband was in. Then there was something over the loud speaker; a hurricane or tornado warning? We were asked to move into another room, one without windows. The whole damn side of the hospital was windows so guess where we were put? In a spare PICU room’s bathroom. This PICU room was being used as storage for hospital beds and cribs and we were asked to sit in the bathroom and close the door. I can’t remember the series of events well after this point but I remember one of the doctors, the first female doctor I had encountered there, one of the ones asking about my labor, coming to give us information. She explained that they believed Bailey’s heart stopped due to a brain herniation and they are concerned that Bailey is now experiencing no brain function. I’ve never felt my heart pound inside my chest so hard. My memory here is not great but I do remember the social worker hugging me and I yelled and made her get off me. I couldn’t be touched. They asked us to stay in the bathroom and they left the room. I was done sitting in that bathroom. I opened the door and sat on the couch. I was screaming and crying, my husband was crying too. I think I called my mom again. I don’t remember what I said. I don’t remember hanging up. I felt like I was dying and I was done being in that storage PICU room. I walked to the door and tried to get out. I guess the handle was stuck so I frantically waved for someone in the hall to let me out. Someone came. There were so many doctors and nurses and people just standing. They were standing in the hall. What were they doing? Why weren’t they in the room? Why weren’t they saving our child!? The Neurologist, I can’t remember her name but her face is burned into my memory, she came into the hall where my husband and I were. She explained that she believed Bailey’s brain swelling has caused irreparable brain damage. I buried my face in my husband and just kept repeating “This is not happening.” and “Don’t you take her.” Out comes Dr. Nick and I yelled “Don’t you say anything! You give her back to me!” And he explained the same thing the other two doctors had said. Her brain had swelled. Our baby’s brain had swelled so much that the pressure of it pushing against her skull had caused it to squeeze itself. She was no longer showing brain activity or responses to stimuli, she was no longer trying to breathe as she was before, she wasn’t doing anything. She wasn’t stable enough to move her to another room in order to confirm it but they all were saying the same thing: Bailey was brain dead and she wasn’t coming back from this. How could this be real? They let us into the room and let us hold her. Family began showing up though I couldn’t tell you who all came or when they got there. I asked for a bed so that I could lay next to her that night. Saturday 2/8/20. I must have passed out for a bit because I woke up around 4:30am to my daughter moving her head and squinting. I smiled. I woke my husband. I called the nurse. I sat up and held Bailey’s hand. I watched as her heart rate dropped and I spoke to her asking her to hold on, to just ride it out and get through it. Her heart rate rose back up. I was so pleased. The nurse came in, Jessica, and I excitedly told her what I saw. I thought to myself, ‘SHE WAS STILL IN THERE!’ I thought, Bailey would have permanent damages but that my husband and I would help our daughter manage and live with them. I thought, we didn’t lose her! For hours this continued to happen. She even started to raise her right arm up and move her left foot and her lips started to make a “sucking on a bottle” motion. When the doctors came in for morning rounds I told them what I saw. I showed them the videos I took. I explained that every time she made movements her heart rate dropped but it always came back up. We had such hope. Dr. Nick didn’t smile. Seizures, he said, our baby was having seizures. And if that wasn’t enough to completely deflate our hopes he said her labs were now showing that her liver and kidneys were shutting down. I’ll never forget this question: “If her heart fails again, which we believe it will, do you want us to resuscitate her?” I have never heard such an impossible question. ‘Do I want you to keep my baby’s body alive?!?’ Dr. Nick explained that they can probably “support” her body, meaning that as her organs failed there were things they could do to keep her body alive and we could talk about long term care options but he needed us to tell him whether we wanted her resuscitated again if her heart stopped. In my head I was screaming: STOP! This couldn’t be happening. This was my baby! OUR BABY. She was perfect. She was everything. She was the most beautiful baby girl I had ever seen. She was heathy! She was 1 day short of being considered “full term.” And we couldn’t do a god damn thing to help her. Now we are talking about LONG TERM CARE FACILITIES?! Somewhere we can stash her body, for as long as her heart can take it. Like a museum we can go visit her in?! She would never do anything, physically, because of the damage so all she would ever do is lay there?! My heart and head just couldn’t wrap themselves around these ideas. How was this happening to us? Her seizures were 30 min apart, then 15 min apart. And then I held her and they stopped. For a short while they stopped. And then they started again, 15 min, then 10 and then 5. It was just horrific. She was brain dead and now her body was just slowly failing. My husband and I asked Jessica if they could make it possible for both of us to lay with her. They brought in a big oversized bed and got us all settled in it, together. Our baby girl was suffering, we could see this and it just tore us apart to allow it to continue. We helped our son “hold” his baby sister for the first and last time. My husband asked the family members to come give her a kiss goodbye and they all left the room. My husband and I were now alone with her and we made the most impossible decision, together, to have her breathing tube removed. We held our baby girl as she left this world. Jessica helped us give our daughter a bath and dress her in a new, clean outfit. It was just us and Bailey. Jessica put soft music on and helped remove all the wires and the IV and central line. We washed her hair to get rid of all the medical glue and put a pretty bow on her head and a new diaper. We laid there with her for a while. I told my husband that I just couldn’t see anyone anymore and I needed them all to go. My husband asked if I wanted to hold her longer while he went to tell the family members to head home so I rolled over on my side and held her in my arms. I had this anger in me before now. I hated everyone, for everything! I just wanted everyone to disappear. Jessica said “I know you’re angry and you have every right to feel angry, just don’t let Bailey know. Make sure she knows how much you love her.” I fell asleep and Jessica came in and told me it was time to let them take her. I just wanted to die. I wasn’t allowed to carry her out to wherever she had to go, they had a kiddie wagon that they would pull her down the hall in. Jessica asked me to leave her in the wagon and she would walk us out. This was the longest walk of my life. I’ve never felt so much nothingness. I felt like I was being shoved down the hallway, pushed into the elevator, dragged out to the hospital entrance. Those last steps out the door were just horrific, so heavy feeling. Leaving our baby made me feel like I needed to get out of my skin. I don’t remember getting in the car or the drive home. I don’t remember going to bed that night. GBS Meningitis and sepsis destroyed our daughter. She lived for 8 days. Our baby was in a hospital on Friday, Saturday, released on Sunday, back in on Monday and released again on Tuesday, back in on Thursday and Friday and died there on Saturday. She was in the hospital nearly her entire life and NO ONE CAUGHT IT?! If either of my 2 OBs that saw me for my labor had administered antibiotics when my water was broken past 18hrs MAYBE Bailey wouldn’t have been infected or could have had a chance at fighting it! If I would have known or been informed by my delivery OB what “scraping my membranes” was or what risks are associated with it or if I had even been asked if I wanted that done MAYBE we could have avoided all of this! If the nurse in the mothers pavilion wouldn’t have requested to release Bailey when she failed for jaundice maybe she could have been admitted to the NICU. Maybe they would have caught it then. If the doctor had done the “bounce back” test in the Pedes unit maybe she would have gotten worse there and they might have caught it then. If the pediatrician’s office would have told me to be concerned with a low temp OR a high temp we would have gone to the hospital hours sooner. There are so many ways this could have been prevented or treated sooner starting with, if my OB had just explained what the Group B Streptococcus swab was for, what the risks of GBS are, and what it can do to a newborn maybe I would have been educated enough to call out any of the signs myself. I believe that our daughter didn’t have to die.

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