I have been married for 7 years and had my first baby Avery in June 2013. I'm fortunate enough to stay at home taking care of Avery full time. I'm a native Texan and currently live in the DFW area.
"Most of my pregnancy was picture perfect. I hardly had any morning sickness in the beginning, never vomited, was maybe a bit more tired than normal for a few weeks, but overall it was going very well. I kept every single prenatal appointment. My blood pressure was always perfect, passed the glucose test with flying colors and urine samples always came up clear. My doctor even said to me more than once, “Looks like you are having just a normal, healthy pregnancy.” Everything was so perfectly fine right up until the point when it wasn’t.
Somewhere around 28 weeks my fundal height measurements starting coming up just a bit small and everyone kept commenting that I hardly looked pregnant at all. But they weren’t far off – just a couple of centimeters and my doctor wasn’t worried. He encouraged me to keep active and I definitely did. I was working full time, taking the dog for a mile walk every morning, and spending every free moment meticulously painting and decorating the world’s most perfect nursery. Then, at my 35-week checkup my doctor measured my belly and made a quick, off-handed comment. “Boy you just really don’t show at all, do you?” I had mentioned in my last appointment that people kept telling me I looked too small and just blew it off saying everyone has an option. He didn’t seem too concerned and said it was probably just the way I was carrying her, but wanted to get a ultrasound just to make sure. Since I hadn’t gotten a peek at my girl since the 18-week gender reveal, I was happy for a chance to see her again.
It was 2 days until my ultrasound appointment (6/19/13) and I tried my best to stay away from Google. I read bits and pieces about IUGR (Intrauterine Growth Restriction) and most of it sounded scary. My husband Landon came with me to every doctor appointment throughout the pregnancy and was by my side that Wednesday morning. I was shaking as the ultrasound technician started. At one point Landon saw her record an S/D Ratio measurement and asked if 5.6 was a good number. I knew her answer of “I don’t know” was not a good sign.
We had already scheduled an appointment with my doctor for an hour after the ultrasound and had to drive across town to his office for the visit. When we arrived they told us that he was at the hospital performing a c-section and would be at least 45 minutes late. We agreed to wait. We were in that little room for well over an hour and couldn’t resist the Google. We knew before the doctor ever entered the room that an S/D Ratio over 3.0 at 35 weeks was bad. It meant that the blood flow through the umbilical cord was restricted. We also knew that the estimated weight – 4lbs 8oz – was too small for her age and she would definitely be categorized as IUGR. When the doctor came in, he never made eye contact with me. He said he was referring me to a high risk doctor and had already scheduled an appointment for us in less than 2 hours, so we were rushed out the door with no details or any kind of reassurance. I am not an overly dramatic, panicky type of person. I am usually optimistic to a fault. But I cried the entire 25-minute drive to the high risk doctor.
The MFM (Maternal Fetal Medicine) doctor performed another ultrasound and confirmed the things we already knew. She told us that she couldn’t tell what might be causing the growth restriction, but that as far as she could tell developmentally and physically, our baby girl looked perfect other than just being small. And the good news was that although the blood flow was restricted, it was showing a constant, consistent pattern. She put me on bed rest and told me to very closely track baby’s movements. We were to go to the hospital immediately if we suspected “decreased fetal movement” – something that completely terrified me. And we scheduled a follow up appointment to check on the blood flow again in 2 days.
I was terrified, but we still had a lot of work to do to get ready for this little girl and I tried to keep my mind focused on positive thoughts. We had just got the carpet installed in the nursery that morning, so when we got home my husband go to work putting together the furniture and installing the closet system. He moved the mattress from our guest bedroom into the nursery so I could lay on the floor and watch him work while I folded her tiny clothes.
The following day I was a nervous wreck trying to keep track of her movements. How long had it been? One hour? Two? Does a hiccup count as a movement? We ended up in the ER that night because I didn’t think I had felt her in almost 4 hours. After some orange juice and monitoring, we were sent home. On Friday morning (6/21/13) we made a trip to Buy Buy Baby to get the remaining items off our registry. Landon made me wheel around the store on a motorized wheelchair. We went straight to the doctor appointment from the store. The whole way there Landon was saying he thought they were going to send us directly to the hospital to deliver the baby that night, but I didn’t think so. We were seeing a different MFM since the original one was out of town for the weekend.
The next ultrasound showed some good and bad news. Baby girl had grown to an estimated 4lbs 11oz, but the blood flow condition had deteriorated. It was now showing intermittent segments where there was no flow at all. When I saw that, I lost my calm composure. I was scared and the responsibility of keeping up with her movements was too overwhelming for me to handle. I will always be grateful for that MFM because he listened to my instinct and agreed to admit me to the hospital. His recommended plan was to admit me immediately, administer steroid shots which he said could help to improve the blood flow and then try to begin inducing labor the following Monday night.
As I was being admitted, my blood pressure was just slightly elevated, but they wrote it off as nerves. I told my mom to wait to come until the next morning and I got some rest that night knowing that my baby was in a safe place and being monitored. The next morning my blood pressure was still a bit high and I asked the nurse if they should check my urine for protein since I did know those were the 2 symptoms they would look for in preeclampsia. She acted annoyed that I was asking and said again that my blood pressure was just nerves. When she dropped by later on she (rather rudely) informed me that she checked my urine and it was clear and I really need to just calm down already."
And then at 3am (6/23/13) I woke up very suddenly. Something felt off. I was nauseas and anxious and I immediately paged my nurse to tell her. She came in and hooked me up to a monitor and left the room. Landon was with me and I just kept saying I didn’t feel good. My pulse was very low and kept dropping below 50 and setting off the monitors, but the nurse never seemed concerned. I drifted in and out of sleep as the monitors kept beeping. I blindly trusted that the nurses would know if it was anything to be concerned about. My mom came the next day and I was still sick. It felt like there was a hard lump in my stomach. I was nauseas and my head hurt so bad I could hardly move. The nurse said it was indigestion. Around noon it was getting worse and I asked Landon if he would help me shower. I thought maybe getting cleaned up would help after laying in that bed for 2 days. I could barely walk to the shower I was so weak. As I sat in a chair and let the water run over me, I vomited. This was the only time I ever vomited the entire pregnancy. But at the time I was hoping it would be a relief and that maybe I would feel better afterwards. However, it continued to get worse. I was achy and weak. A “general malaise” as I have heard it described. I even said “get this baby out of me!” more than once that day. The nurse told me I was just nervous because I was going to be having a baby tomorrow. I knew this wasn’t right, especially after I was in such a good mood the day before, but I didn’t want to be a bother. And again I trusted that they would know if it was anything to be concerned about.
At around 5 that evening I started to get a sharp pain in my chest. It was right in the center and sharply stabbed right through and radiated into my back. I had to hold my hand pressed against my sternum and breathe in and out very slowly. We told the nurse and she said the doctor was on his way. I laid there just breathing in and out for over 2 hours. I have a very high pain tolerance, but with was a level 10 and I almost couldn’t stand it anymore. I decided as soon as the doctor got there that I would ask for a c-section. Coming from someone who always wanted a natural birth, I surprised myself with these thoughts and I even called myself a chicken over it. But I just felt in my gut that something was wrong and she needed to get out and get out fast.
When my doctor came by, I was hoping for some relief. He prescribed some IV pain meds, drew some blood and ordered an abdominal CT, but he said he really thought I was just having severe heartburn. I told him this most definitely wasn’t heartburn and asked if he thought I might need to just go ahead and have a c-section given that I was in so much pain and the baby was probably too small to tolerate labor anyway (he had told me this on Friday). He brushed me off with an offhanded answer about how my hips were wide enough for her to fit through the birth canal and he wanted to stick to the original plan of starting cervical ripening that night and Pitocin in the morning. I was too exhausted to protest and was just relieved that the pain meds seemed to be working.
A short time later the nurse came in and announced that they would be starting me on magnesium sulfate and would need to insert a catheter. She mumbled something about liver and said there was some protein in my urine so this was just a precaution. She said I had PIH (Pregnancy-Induced Hypertension) and it was really no big deal at all but they were just being careful. I knew my mom and Landon had been looking at Google that day but they weren’t saying much to me. My mom asked if they were at all concerned about “this HELLP syndrome” that she read about. “OH NO NO NO, not at all – this is just a little PIH – not even pre-eclampsia. Don’t even worry no big deal.” All 3 of us in the room were skeptical about that nurse and we asked to speak to the charge nurse because we wanted someone different on such a critical night. But the flaky nurse said the charge nurse was busy with a critical patient and so we let it go.
The magnesium sulfate made me pretty groggy and I was simply exhausted after such a long and painful day, so I fell asleep. My mom and Landon stayed up all night long just watching the fetal heart monitor. I woke up just briefly when the nurse came in at 3am to insert eh 2nd cervical ripening agent and I heard her tell my mom that I was starting to have some contractions. I could just barely feel them and they weren’t painful at all so I went back to sleep.
Early the next morning, I could tell my mom and Landon were exchanging some nervous glances and I could hear that baby’s heart beat on the monitor seemed to be dropping. When the nurse came in and announced that they were going to go ahead and just do a c-section instead of starting the Pitocin, I was actually relieved. I was still having those small contractions and with each one her heart rate would slow into the 30’s and barely recovered in between. My doctor came in and asked if I had any concerns. I pointed to the monitor and said just the scary sound of her slowing heart beat and asked him to just get her out safely. I hugged and kissed my mom and Landon went with me down the hall to the OR, but he had to wait outside while I was prepped.
When they moved me from my hospital bed to the OR table, there was a large pool of blood where I was laying and I saw the two nurses exchange a worried look. Then the anesthesiologist asked me to sit up on the table. I could barely muster words to tell him I was not going to be able to sit up – I was too weak. “Why can’t she sit?” he asked the nurse and she just sheepishy said “I think it’s cause she saw the blood.” I laid on my side and just tried to hold still so he could get in the spinal block. I could tell he was having some trouble. A nurse came in with a fetal doppler and was listening to her heart beat. She had a hard time finding it and then she couldn’t find it at all. She looked at me with sad eyes and I think I went into shock. There was a lump in my throat and I couldn’t breathe. Then it left like I was electrocuted – a shock went through my entire body and I almost jumped off the table. It happened a second time and then I blacked out. I don’t know how much later it was that I heard my husband’s voice behind me, but it seemed like forever. I was wondering what was taking them so long and why hadn’t they started yet. I knew they needed to get her out and fast – if there was still time at all. I told the anesthesiologist I was going to throw up and started dry heaving. I could feel the table shaking and it took me a few seconds to realize that meant they had started. I was drifting in and out of consciousness. I heard them say she was out and I asked if she was breathing. No answer. I asked again is she okay?? Someone said she is breathing and we have a red head. Words cannot describe the relief I felt when I knew she was alive. Avery Nichole was born at 7:42am on 6/25/13. APGAR scores were 4 and 7. They worked on her for a little bit and then said they were going to bring her by so I could see her and then take her to the NICU. Someone brought her over and I kissed her on her perfect little cheek and then she was whisked away and Landon went with her. I thought wow – she was the most gorgeous baby I had ever seen."
The next thing I remember, I was back in the room and the anesthesiologist was trying to insert some kind of line into my arm (I know now it was an ART line). He was poking me over and over and over and having a terribly hard time. I thought I should just lay still – ha like there is anything else I could have done! I could tell my mom was getting texts from Landon and she said “4lbs 13oz”. I thought was sounded perfect – a little bigger than she had been two days earlier. Then she sounded concerned. “Wait, no, 3lbs 13oz? He said 3lbs? Do you think he really means 3lbs?” Oh no, I thought, 3lbs is too small. Something must be wrong. The anesthesiologist was still trying to insert the line. He was getting kind of frantic. Everyone once in awhile my mom would say my name and I would open my eyes and look at them. Landon was back in the room at some point. Later he would tell me that he was in the NICU watching them wrap up our teeny tiny baby when he heard them call “Rapid Response Team to L&D Room 4”, and in what he described as the most surreal moment of his life, all of the nurses in the room put down their tiny, sick, premature babies and ran out of the room. One of them called back to him and said he should probably come too. The medical record notes from the RRT say that my blood pressure was 38/22 when they arrived. It seemed like there were a lot of people standing there looking at me. They looked worried and no one was saying anything. They brought in a different anesthesiologist to try to insert the line. She tried on both arms. They brought in an ultrasound machine and were using that to try to find an artery. Over and over and over they stuck me – over 50 times. Finally they got the line in and I heard my mom say, “That’s the second time an anesthesiologist saved the life of one of my children”. (the first was when my bother was born) I was confused and tried to tell myself she was being dramatic.
They took me down to ICU and once in there the anesthesiologist said he needed to insert another line, this time in my neck. And there would be no anesthesia, so it would hurt. He draped a plastic sheet over my head and then it felt like he sat on top of my chest and started stabbing me in my neck. He was right – it hurt. I started to get hot and claustrophobic as my breath was fogging against the plastic but told myself that I probably shouldn’t freak out while a man was sticking needles in my neck. So I laid as still as I could and tried to zone out. He stuck me 10 times before he got the line in. Then they started a cocktail of drugs and I barely drifted in and out of consciousness for the rest of the day. That evening I started to have pain in my shoulder and told my nurse. She said it was probably gas pain from the surgery and brought me a heating pad. It didn’t do much to help, but I tried to sleep as best I could in spite of it.
The next morning, the nurse rushed in and said they needed to do a blood transfusion and were ordering an abdominal ultrasound. I told Landon to call my mom. Apparently my blood work showed I was having internal bleeding. I know now from my medical records that my kidneys were also shutting down and I was extremely swollen – I had gained 25lbs in just a few days. I had only gained 17lbs in my entire pregnancy. The ultrasound showed a very large 19cm hematoma on my liver and my doctor said that there was also blood in my abdomen when he opened me up for surgery, so he suspected the bleeding had been going on for awhile. While we waited for the blood transfusion, my nurse said he would help take me up to the NICU to see my daughter. It was a lot of work to get me into a wheelchair and un-hook and re-hook all my various lines. I held a bucket of my urine in my lap and off we went.
However, the next morning I wasn’t getting better. My blood work was still a big mess and I started to have very severe pain on my right side. I thought the pain I had the night before Avery was born was a 10 – the worst pain I had ever experienced, but THIS was worse – way worse. I was holding my side and crying in pain. They gave me Dilauded, a drug 100 times more potent than morphine, and it would only relieve it for maybe 20 minutes before I would need another shot. My husband went to the MFM’s office, which was in the hospital, and basically demanded that she come see me. The head ICU doctor was still trying to say that I did not have HELLP syndrome, it was just an un-related liver bleed. He and the MFM got in a heated argument. She said this absolutely was HELLP and it was serious and he needed to be monitoring much more than my liver. My kidneys, lungs, heart, eyesight and brain could all also be impacted. I hadn’t told anyone yet, but I was starting to see double. I don’t think she meant for my family to hear, but my husband heard her tell him this had a 40-60% mortality rate.
My family immediately started the process to transfer me to a bigger hospital – one with a Level 1 trauma center, liver specialist and surgeons. The ICU doctor refused to say it was medically necessary and said we would be paying out of pocket for the transfer. My husband handed over our credit card to pay $8,000 for a helicopter to take me 25mi away. (Fortunately, we were able to challenge this after the fact and were able to get most of the cost reimbursed my our insurance company) Before I left, they brought Avery from the NICU down to my room so I could see her once more. Amazingly she was doing great and was already off the c-pap and on room air. Tiny and perfect.
Once at the bigger hospital, I was monitored much more closely. They did an x-ray and confirmed that I did have fluid in my lungs, in addition to the liver hematoma compressing my lungs, so they started respiratory therapy. My kidney function was already starting to improve. They did a head CT and brought in an ophthalmologist to monitor my eye sight. At least they were taking my case very seriously. My ICU nurse ominously said the last case of HELLP syndrome she saw, they lost both the mom and the baby. The OB there was the head OB at a hospital that delivered 17K babies each year and she said she had only seen a case like mine 1 time. Everyone kept saying it was so rare. They brought in an endocrinologist because there was a concern that my Pituitary gland could have been damaged during my delivery. They brought in an Infectious Disease doctor because I had spiked a fever – probably an infection from the catheter. I had a team of liver specialists monitoring the hematoma on my liver, ready to rush me into surgery if it were to rupture. Landon went back and forth between the two hospitals to visit both of us and he would bring me pictures and videos each time – this was the only joy I had.
I stayed in the ICU there 6/27-6/30 and then they started to work on transferring me to a regular room. Avery was doing so well that they were releasing her from the NICU and so they worked hard to find a place where she could safely stay with me in my room without being exposed to any illnesses. They found a place for me on an anti-partum floor. Landon and my mom had to go stay overnight with Avery in the other hospital before they would let her go. Finally, on 6/30 she was released and they brought her to me! The anti-partum room was much more comfortable for me and for my family. They kept me there 3 more days until they got my fever down and found a pain management regimen that I could keep from home. My hematoma was so large it was compressing my lungs and stomach and was incredibly painful. I was on the max dose of a Fentanyl patch and taking hydrocodone pills every 4 hours. We all finally got to come home together on 7/3/13.
It was the scariest and most horrible thing I have ever been through. I’ll never be the same and neither will my husband who had to face the very real possibility that he could lose me and be raising our daughter on his own. But since then I have found a community of HELLP Syndrome survivors who have shown me that I was one of the lucky ones. Most of them had extreme premature babies with months-long NICU stays. Sadly, very many of them lost their babies. And some lost their lives, leaving behind broken families wondering how it could all go so wrong. There is a critical lack of patient and doctor education on pre-eclampsia and HELLP Syndrome and so with my story I hope to spread awareness and help to empower women to become advocates for themselves and their unborn babies when it comes to fighting this terrible disease.
These are the lessons I learned and hope to pass on:
- Trust your gut instinct and don’t be afraid to be a pain in the ass or to be rude to a doctor or nurse who isn’t taking you seriously. Always better to be safe than sorry.
- Take your health just as seriously as your baby’s because your life can hang in the balance too.
- Even a “low risk” pregnancy can turn high risk very quickly, so know the signs and symptoms, but also know that the only symptom may be as simple as “something feels just a bit off” – that’s enough to warrant getting checked out."
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