"I am 32 years old and an Occupational Therapist. I live in NJ with my husband and we were married in June. I love to read, play with my dogs, crochet, hula hoop, and make things. I love the snow, but I can't wait until the summertime to sit on the beach and enjoy the sun, sand, and ocean, because that's where I'm really and totally relaxed.
HELLP Syndrome was diagnosed at 22w6d. I had never heard of it before.
"I am a childless mother. At least, I think I’m a mother. No one will tell me for sure. I experienced pregnancy and I experienced birth. I haven’t experienced my child’s life, but I feel like I’m a mother. I’m not sure what happened. Unfortunately, as the research shows, I’ll probably never know. I am a survivor of HELLP Syndrome and my baby is another HELLP baby. My story is a little long. It’s the story of my baby’s entire life.
I had the easiest pregnancy I can think possible. Morning sickness? Nada. Blood work? Perfect. Weight gain? Barely. Exhaustion? Yes. I had a honeymoon baby growing inside of me and amazing me every time I felt him (yes…him) move. I couldn’t get over the fact that I had grown a tiny being from nothing. My anxiety about being pregnant in general finally started to wane after the first trimester. By twenty weeks I was excited. Finally, excited. Once we knew he was a him I was reading books, completing my registry online, and planning his nursery. At 22w I had my monthly OB appointment. Everything was great. At 22w2d my husband and I went out and bought all of the furniture we’d need for his room. I had already gotten my breast pump in the mail. I was almost ready to go.
At 22w4d I woke up feeling a little gassy, crampy, or maybe just bloated. By 7:45pm I told my husband I just needed to try to get comfortable upstairs because I was just starting to feel a little pain underneath my sternum. Looking back I remember noticing that I wasn't urinating as much as I had been, and the two nights before I was diagnosed I slept for over 10 hours each night because I was so fatigued. In the hospital I developed high blood pressure, my platelets were consistently dropping, liver values increasing, and bilirubin increasing. I also developed pulmonary edema- I had gained 10lbs in the last month of my pregnancy, but we didn't think anything of it because I had barely gained in the first 18 weeks.
Finally at 9:30pm I called my on-call OB. “It sounds like reflux…very common during pregnancy.” I didn’t exactly agree, but as someone who doesn’t get reflux, what did I know? I took my Tums as I was told and tried to get some rest. Even on the couch, I just couldn’t get comfortable. Couldn’t sit, couldn’t lie down. The panic started to set in and the pain continued to worsen. At 11pm, I told my husband we needed to go…now. The ride to the hospital was almost unbearable as the pain below my sternum intensified. It began to get harder and harder for me to take deep breaths and I could feel the panic taking over as I tried desperately to keep it together.
When my BP came back at 175/105, I laughed and told her “not a chance. Take it again.” A second BP was almost exactly the same. I couldn’t believe it. Next was to try to get my blood- and apparently to try to get my husband to stay conscious as the nurses tried and tried for a vein in my puffy arms.
My doctor visited us sometime in the night and explained that my platelets had dropped from 300,000 at the beginning of my pregnancy to 142,000 on this blood work. My liver function tests (LFTs) were in the 200s (norms are in the 30s). With my high BP, it looks as though I have preeclampsia. I’m done with work. I’ll be there at the hospital on bed rest until I deliver. Hopefully we can make it until 24 weeks. I don’t know how all of the information got to my brain through the tears. Immediately I knew that this pregnancy was coming to an end. My nurse started me on a magnesium sulfate to prevent seizures. She explained to me that pretty soon I would start to feel awful and hot.
The next morning, based on one set of labs, a hospital MFM told me I needed to deliver immediately. “Your baby will die. He might cry out at first, but he will not survive.” Not exactly the bedside manner I would have hoped for."
My body stopped being my baby’s and mine at this point. I continued to feel him move. I started to get scared that I wouldn’t get the chance to listen to his heart beat again. At night my nurse arrived while my family was present and brought the Doppler in with her. My baby’s heart rate was still a healthy 150bpm. People say that heartbreak is figurative. Heartbreak is real. Heartbreak is a feeling. There is a point when something awful is happening that you can actually feel your heart break. And that was it. He was fine, and we had to force him out of my body before he was ready. As a side note, I’m an Occupational Therapist. I know the struggles a 24-week-old baby would likely endure. There’s not one part of my logical being that wanted that for my baby. But I felt defeated. The mother in me wanted to try to last for 8 more days to give my baby a fighting chance to live. But I would die. Thoughts about choosing my life over my baby’s flicked through my head. I tried not to give it a second thought.
The following 24 hours were a blur- from the meds, my anxiety, and my shutting down just to survive. Every three hours my OB inserted the next dose of Cervadil to soften my cervix (it was explained to me multiple times that at 23 weeks your body just isn’t ready to give birth. Please…as if they had to explain that to me…I as well aware). After 15 hours, my exam showed that I was almost ready to go. As I found out later, the next method that the doctor used to open my cervix was a little old school (I was told later that at one point I called the OB satanic. Although the method was extremely effective, it was a bit traumatizing with no pain meds). Contractions started immediately, about one minute apart. I didn’t even know they were contractions. The epidural was inserted before my platelets dropped again and I was given a PCA pump. Within thirty minutes my family cleared out of the room and the delivery room was being prepped. It was just my husband and I, the OB and my RN left in the room and suddenly I was being wheeled into the delivery room. The heaviness of the situation was hitting me. I knew what was coming next. My baby was about to die.
As I was situated in the new room, more and more people began to enter. At least nine people from the NICU team were present in the room as well. I remember thinking, what was the point of them being there? I was told my baby wouldn’t live and I understood. There was a slight complication during birth and we heard that the baby didn’t have a heart beat. Just a few seconds later, as my husband held my hand, Vincent Alexander was out- 2:39pm, November 27, 2013- the day before my birthday, the day before Thanksgiving. There was silence. After the NICU team examined him, my nurse brought Vincent to me and placed him on my chest. It was unreal. He was perfect. Perfect nose and lips. His head perfectly shaped. Eyes still fused closed. People started clearing out of the room. My husband and I just looked at him and touched his face. His skin was so soft and so warm. If nothing else my body had kept him warm."
We took pictures of ourselves with him, him unwrapped, his whole body, his tiny hand resting in mine. But thinking now, there are so many pictures that we didn’t take- his tiny feet and hands. I remember lifting each one of his arms and looking at how his body moved (in OT terms, doing range of motion on the little guy). I lifted his legs to see his backside. He was a perfect little boy. Had I not gotten so sick, he would have continued to live inside of me.
Finally, the last time the NICU RN came into the room, he examined him, turned to us and said she needed to get one of the doctors in to verify. When the NICU doc entered the room I watched them both, staring at my son, waiting for one of them to time his tiny cord pulses. No one looked up. I looked to the clock and saw the time and as I did, I heard the doctor state 6:35pm. I broke down. It was like everything had started over. I knew he wasn’t going to live. I was waiting for him to die. And now that he had, I felt like he was gone. My baby lived for just four minutes short of four hours.
They bundled him up again and gave him back to my husband. They told us we could take as long as we wanted. I remember thinking that I didn’t want them to leave. I didn’t want to spend time with my dead baby, I just wanted to say goodbye. I spent time with him while he was alive. My husband and I each kissed him goodbye and I touched his tiny head again, and then I watched my husband hand him over to the nurse. She placed him in a bassinet and I watched her wheel him out of the room and out of our lives forever.
I stayed on the magnesium sulfate and bed rest for another 12 hours. My blood pressure continued to be dangerously high. I stayed in the hospital for another three days and went home on blood pressure meds, which I’m still on because my issues have not yet resolved. I went home without my baby, but I was a mother. I was a mother for almost four hours. A part of me thinks I’ll be a mother forever."