My second pregnancy was cut short by a rare pregnancy complication known as HELLP Syndrome. It is related to eclampsia and the only cure is delivery. I haven't found a lot of personal testimonies about HELLP out on the internet, so I want to share our experience on the chance that it can help a mom in a hospital bed or a dad pacing nervously feel more prepared for the situation. This is a two-part series split up between my experience as a patient and then as a parent tending to Bit in NICU.
Diagnosis
I arrived at the hospital exhausted. The heartburn started 21 hours before and settled like a hot coal. My right shoulder ached and throbbed from hunching over to coddle the pain. I hadn’t slept more than an hour and midwife wanted me to come in and get a prescription grade antacid. We signed in at the ER, 33 weeks and 6 days along in our pregnancy.
It was Muffin who insisted I go in. I had called the midwives twice and taken a sordid alkaline cocktail over the day: Tums, Pepcid, Mylanta, straight vinegar, raw potato, milk, ginger drinks. Nothing stopped the stabbing in the center of chest and when he got home he found me hunched down in my umpteenth shower of the day trying to get any of my muscles to loosen up. Seeing me curled over my belly, arms limp, face twinged in agony, he made the third call and demanded I be seen immediately. I threw on an ill-fitting sports bra, comfortable pants and a March of Dimes tee shirt from a 5K walk we had done in May. Oh, the irony.
The day before we had attempted a garage sale. It was blazing hot outside and fortunately we had an air-conditioned garage to set up shop in. Being indoors hid us from customers who didn’t read our signs so business was slow and we were finished by 3 and on our way to a minor league baseball game in Massachusetts to see an old college friend (young by our ages) pitch. What do you have at a baseball game? Hot dogs, nachos, ice cream and between that and the heat I was sure my pains were from dehydration and possibly food contamination.
I got settled in my room with an IV and belly full of monitors. Lil Bit seemed perfectly content and when a pregnant mom is in pain, there is nothing more relaxing and reassuring than a regular tick-tick-tick or line spike-spike-spike to let you know baby is free from your torment. After taking some blood work and settling in, Muffin ran out to get me something to eat since I hadn’t had anything all day. The IV medications weren’t really helping much but I was desperate for something substantial. He brought me a salad and I told him to take Bug home and get some sleep because I was sure I was just dehydrated and needed fluids and rest. I would be headed home tomorrow.
The midwife on call was Mrs. S; of my three attending midwives she is the most matter-of-fact. In hindsight I couldn’t have asked for things to happen during a better rotation shift. The woman I had with me through each set of circumstances was perfect. Just thirty minutes after I sent Muffin and Bug home, Mrs. S appeared at the foot of my bed, her face looking serious. “Good news,” she said. “We know what you have.” “Bad news,” I finished for her, “you have to take the baby.”
My blood work confirmed that I had developed HELLP Syndrome, a pregnancy-induced liver complication similar and related to Eclampsia. My heart rate and liver enzymes were elevated, blood platelets low. HELLP develops quickly and with little to no warning a health pregnancy like mine can turn critical as the liver fails. The physical pains I felt were actually my liver screaming. The only treatment is delivery.
Mrs. S and I discussed the plan of action. There was no emotion from either of us; it was just a talk about what would happen, when, and what could come of it all. In critical situations I go into work mode and what I needed was a strategy and information, not coddling. I called our wonderful friend Miz Brandy first as she had offered to help with Bug if we went into labor before my Mom could make it up. Then I called Muffin to finalize babysitting arrangements and then my Mommy.
They gave me a steroid shot at midnight to help Bit’s lungs. I was told that statistically, premature girls are significantly stronger than boys and there was a good chance she would be perfectly fine. But, if she wasn’t, the hospital less than a mile away had a great NICU and she would be transferred there after tests. They also put a medication in place to begin softening the cervix. All I needed to do in the immediate time was sleep. Has anyone ever slept in a hospital with vital sign checks every 45 minutes, a pending premature delivery, and toddler being shuffled off to someone else’s house without giving you a hug first? I don’t think so.
Birth
Mrs. S came in a few more times that night to discuss strategy before she was off duty and switched duties to her midwife partner, Barbara. I wish I could say I remember everything she said. I wish I could say I hung on her every word and paid strict attention. Truthfully, I was paying attention to my daughter. While my medical professional was laying out the details of my urgent situation, the face of my 2-year old hovered over her shoulder. There was my Bug: her blue-gray eyes, her pink berry cheeks, her flaxen-waved curls done up with a bow. While Mrs. S blah-blah-blahed, I promised my Bug that I would get through it for her, I would make whatever medical choices I needed to ensure I was home reading her bedtime stories as soon as possible.
At the moment of diagnosis, my original birth plan went out the window. I had planned to have a natural hypnosis birth like I did the first time around. I had planned on demanding a quiet, serene environment with my mom as my birth coach and limited medical intervention. I had planned on never using an epidural and letting my body do what it needed to do. But I was only 34 weeks along and had only been practicing my hypnosis for a week or two. My heart rate was already elevated from the HELLP and I was already exhausted from a night writhing in pain. My mom wasn’t there to read my face and direct my attitude if it needed adjusting. From the time of the diagnosis, I knew I would be getting an epidural this time around to keep my body as calm as I could so that I could get through it and meet Bug with a hug on the other side.
We got off and on hospital sleep that night and by about noon they began the formal induction. I wasn’t really dilating yet so I was only about 1 when they first checked me. The first few hours went by fine with me and Muffin killing time and standing up walking the room and trying to get gravity to help us out. One check, then another and I wasn’t really progressing much farther than 3. After five hours and getting no farther than 3 I started to wonder if all this was really necessary. Was I really so bad off that my baby had to come out at 34 weeks? There was no way to get her another week? Another three days?
By 7pm I was more frustrated than I was in pain, so with Bug in my mind I called for the epi. It took a long time for them to process it and get it to me for some reason. It wasn’t until 9 that they were ready to go. It was in the epidural process that Muffin showed his full potential for being a birth partner. He held my hands, he said the right things, he counted, he relayed messages, he demanded eye contact. It is one of the highlights of our partnership for me and I am so proud of how he stood by us that night. By 9:30ish I was finally finished and ready to get my much needed rest. Midwife Barbara still hadn’t broke my water through all of this yet because she was assisting on another delivery and didn’t want me to progress too fast for the staff.
I curled up to sleep and Muffin left to go three miles home and let the dog out. At about 10:35pm, the nurse woke me up taking my vitals and told me that Barbara was going to break my water. I couldn’t believe when I looked at the clock that I had only been asleep for an hour! Wasn’t the whole point of the epidural so that I could sleep? I called Muffin to tell him they were breaking my water and he said he would start getting ready to head back to the hospital. She checked me; I was only a 5 and then broke my water.
Barbara no longer got the gloves off her hands when I told her I either needed to get up to go to the bathroom or was going to go all over her. She scrambled to check me again and I had gone from 5 to 10 in about 45 seconds. I called Muffin again, this time ordering him to get back to the hospital right this second in the sort of tone only a woman in labor can use properly. He walked in the door fifteen minutes later, I pushed four times and out came our tiny 4lb 10oz rock star. They laid her on me and we had that moment, that perfect moment that cements your heart as a mother to a child. They took her, checked her, wrapped her up and she was mine for an hour. A perfect hour. She didn’t cough, squeal or whine. She just snuggled up to me knowing she was mine forever. “Look at this Lil Bit,” I said, and that is how she got her name.
During all of this there was the tugging and the pulling to get the after stuffs out. I began shaking compulsively. I thought I was going to bite my tongue off I could not contain my shivers. I was told that sometimes epidurals have that effect on people and in hindsight; I would take my non-med birth over the epi-birth any day! I could tell something was wrong because Barbara was pulling and whispering to the nurses but trying to not be too loud. I knew they were murmuring about my blood loss and how to stop it. The placenta came out and seemed to be intact. Before I could go to the post-delivery room I had to be more stable. I still had the urgent feeling that I had to go to the bathroom so I asked for help to get up and go. The steps were strong, I felt my legs, I felt my feet. I sat. Then the world lost its edge and the doorway blurred into the tiled walls. That chill of faint rolled up my spine and into my arms. I vaguely remember the nurses grabbing my arms and urgently forcing themselves against me. As the world jerked askew and contrast faded into cloudiness all I remember thinking was Wow, maybe I AM sick.
Surgery
A birth is a miraculous thing. The baby and the emotional experience is always the highlight of the big show, so no one remembers the little details after the climax. If you’ve never done it before, the saga after the birth is usually the hardest. Think about it, there is this gorgeous new person in the world that you created, but you can’t be reunited with them again until after your bleeding is contained, you’ve urinated, or they have pushed and prodded all your sore parts to be sure you won’t turn septic. Phoebe Buffet said it best after she delivered her first triplet on Friends, “I already had a baby. Leave me alone!”
After our blissful hour together, Bit was wheeled off to the nursery for tests. Muffin went with her so she wouldn’t be alone, but under our unexpected medical circumstances, that meant I was alone. After I fainted in the bathroom, I was put back on my bed. That chill was still taking over my body; head to toe waves of awareness and numbness from a being in shock. Each undulation was a defensive scan, Uterus to Brain: Baby is out! Brain to Immune System: Fix us! Fight, fight, fight! Consciously I was basically praying for an out of body experience. I didn’t want to die, but I definitely just wanted to go to sleep and wake up when it was finished. One of the complications of HELLP Syndrome is that palette levels get low and therefore blood clotting becomes compromised. I was a textbook case and they could not manage the bleeding.
The urgent, focused whispers recommenced and the prodding intensified. Barbara started pushing in on my stomach to feel for pieces of placenta that may have been left behind. Imagine getting hit by a baseball in the thick part of your leg and then having a bully push in on it over and over and over again. She asked me not to flex and fight the examination but I just wanted to curl up and protect myself. I reached up and grabbed her arm, “Please, I know this is important and you have to do it so I don’t die. Just knock me out and do what you have to do. I am too tired to help you anymore.” She nodded and the scrubbed shirts scattered in every direction.
Operating rooms are spooky; the sterility of the steel and white, the hinged lights, the echoing voices of a new staff. I found it hysterical that the OR nurses introduced themselves to me. My sense of humor came back long enough to crack a joke about appreciating the formality but if I remembered who they were after this was over I wouldn’t be very happy. In my own head I was pretty grossed out about this new group of four strange men about to be elbow deep in my business. The anesthesiologist came in, I made it to 79 counting backwards to 100 before going black and the D & C began.
A D & C, or dilation and curettage, is a common procedure to check uterine bleeding. They expand the uterus slightly then scrape it out to remove blood or particles (placenta in my case) and hopefully spot places where fresh blood is coming from for treatment. They removed some suspicious tissue for testing and placed what they called a balloon in my uterus. They essential used a medical bag (like an IV bag) to create a vacuum in my uterus. The pressure of air from the vacuum acted like putting pressure on a wound to encourage clotting. I actually woke up during the procedure! I came to, opened my eyes and saw where I was, then shut them tight again and prayed Go back to sleep! Don’t move! Go back to sleep!
I came to at about 5am. I actually felt a little better since the shaking had stopped and I was able to get about 3 hours of uninterrupted sleep, albeit drugged sleep. A minute or so after I woke up, a tank of an incubator rolled into my room. Behind the thick glass laid a tiny head with tiny arms and tiny legs tangled in a web of wires. While I was in surgery, our lil Bit had exhausted her umbilical blood oxygen supply and was trying her best to use her lungs in this cruel new world. It wasn’t going so well. I reached a kiss to the glass and watched her roll away headed for the NICU at a separate hospital about a mile away.
Recovery
In a cruel twist of architectural genius, the post delivery ward of my hospital sits on the same side as the rising sun with nothing but tinted glass and a veiled shade. So, between the glaring dawn and hourly vital checks, my “rest” time continued that first morning. While I slept, Muffin gathered Bug from Miz Brandy and drove into Boston to pick up my mom at the airport. They rushed to the NICU, took pictures of Bit strapped under a bili-light and oxygen igloo and ate. It was roughly noon before I finally saw them.
As sad of a state as I was in, I felt bad for the rest of them too. Bug was confused about why she couldn’t climb all over me and asked a zillion questions about the IV and catheter tubes. My mom has zero tolerance for helplessness. Seeing her eldest lying in bed and making it to her bedside after the fact was wearing away at her the moment I saw her. She hugged me, held me, and vowed that all was well at my house. Bug and Muffin would eat warm meals and the floors would be clean! Muffin finally let his worry and the wear of the last two days show on his face.
He gave me an update on Bit’s health. He assured me that the nurses at the other hospital seemed capable, knowledgeable and qualified. Then he confessed her condition. When she took a breath, her chest inverted. The chest goes concave because the lungs haven’t filled up and muscles haven’t developed to hold them outward. Seeing his tiny daughter, her arms and leg no thicker than his thumbs, falling in on herself while gasping for air made him ache. Now, I already feel sorry for fathers during childbirth. Yes, moms are doing the work, but we can feel what we feel, describe what is happening and be active in the moments. Husbands and fathers are bystanders with everything and everyone to lose. My muffin sat there torn between his wife and his innocent new baby in two different hospitals. He was tired and worried and near breaking. I was so glad my mom was there to help him.
I did spend a lot of time alone in the hospital. Mom was there for Bug, Muffin was there for Bit and all I could do was rest, build up my iron and platelet levels, and pump. I know I mentioned this previously, but the sounds of a new baby ward are like thundering trumpets when you have no baby in your room. I could hear my neighbors welcoming visitors, squeaky newborns cries at night, and sweet nothings of new parents adorning their babes. My room was painfully silent except for IV drips and the sound of the pump.
By Day 3 I was bound and determined to crawl the mile down the road to Bit’s hospital. My blood levels were slowly improving but my doctors and I agreed they weren’t going fast enough. I requested a blood transfusion and the doctors consented. After another night of hospital sleep I was ready for my first shower since the whole ordeal started and discharge. I was still probably weaker than they would have liked, but they knew every second a new mom and baby are separated from one another is a second too long and they signed the forms and sent me back out into the sun.
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