Pregnant Mother Navigates Care During the COVID-19 Lockdown and Celebrates her Miracle Baby

Pregnant Mother Navigates Care During the COVID-19 Lockdown and Celebrates her Miracle Baby

Name: Jenna
Type of Cancer: Subependymoma
Diagnosed: 2020
By: Jenna
— Categories: Adult   Spine  

Ongoing Pain and Strange Symptoms

I had suffered from headaches since I was a young girl. My pediatrician always told my parents to ignore me, as he believed I was a dramatic kid and was probably feeling stressed. When I reached my twenties, these headaches transformed into migraines. I went to see a neurologist, he didn't seem too concerned. He did an MRI of my brain. It came back normal. Every few years, something would happen that would lead me back to my neurologist. Once, it was a car accident. He did an MRI of my brain. The MRI came back normal. Then it was severe pain in my neck. What did the neurologist do? An MRI of my brain. That one came back normal too.

Fast forward to February 2020. I had recently found out I was pregnant with my first child, and I was very sick. I couldn't keep anything down and was being sent to the ER regularly for fluids. We were told I had hyperemesis and that things would probably improve as the pregnancy progressed. Fast forward to my second trimester, March 2020, also known as the time when the world went on lockdown. I was so sick that every time I sat up in bed, I would throw up. Opening my eyes was an effort. I was losing weight drastically, and my OBGYN became very concerned. I was sent back to the hospital, but being that this was NYC at the beginning of the COVID pandemic, they refused to admit me. There was no research yet on how Covid would affect pregnant women, and they were trying to take as many precautions as possible. The doctors had a visiting nurse service come to my house and put me on 24/7 IVs. They taught my husband and parents (who we had moved in with by this point) how to change the bags, flush the IV, and overall take care of me. When it became clear that my condition was only worsening, my OBGYN sent me to the hospital one more time. They wouldn't admit me but told me I should see a neurologist. By this point, all doctors agreed my symptoms were too severe to be hyperemesis and that something neurological was going on. I saw a new neurologist recommended by the hospital, and he did an EEG in the office. It was no surprise when it came back normal. He wanted to do an MRI of my brain, but given that I had one a year prior, I was pretty slow in scheduling it. A few weeks later, with lots of nudging from family members who were concerned, I scheduled another MRI of my brain.

This is when I started to get lucky. The machine slipped while the tech was doing my MRI and ended up getting a picture of part of my spinal cord. I got a phone call half an hour after getting home from the MRI, telling me they saw a shadow in my spine and that I needed a second MRI of my entire spinal cord just to rule something out. I went back three days later for the follow-up imaging. It was Friday, May 8, 2020. As soon as I got home from the MRI, I received a phone call from my neurologist. I had a very large, 5-centimeter, tumor in my spinal cord, and there was a lack of fluid going to my brain. I needed immediate treatment. He recommended I see a well-renowned neurosurgeon in the area to discuss my options. Turns out, this surgeon also happened to be the father of a student in the AP Psychology class I teach. This surgeon was the same father who spent 20 minutes talking to me at parent-teacher conferences because he loved a project I had assigned on the brain. I called his office immediately, and they told me it would be a three-week wait for a visit and that it would have to be done over the phone due to COVID. At this point, I broke down. I said, “Please! I’m 18 weeks pregnant and just found out I have a tumor in my spinal cord, please call the Dr. and tell him it’s Jenna Z., his son's AP Psychology teacher. Please!” The receptionist put me on hold for a few minutes, and when she came back on the line, she said, “Okay, the doctor says to come in right now. He'll meet you at the office.”

Navigating Care During the COVID Lockdown 

It was a Friday at 11 AM. Because of the COVID lockdown and the inability for surgeons to perform surgeries, I was the only patient in the office. The surgeon did an exam and said, "It's a good thing you advocated for a sooner appointment. Within two weeks, you would have woken up paralyzed on your left side, and there would have been nothing more I could do for you." By this point, I could not feel the temperature or sharpness of an object on my left side. The underside of my left arm was numb, and I hadn't even realized it. I was shocked. Here I was, 18 weeks pregnant, being told I would be admitted into the hospital Sunday and having surgery Monday. We were forced to make decisions nobody should have to make. We were given the odds of losing our baby and had to make a choice of whether or not we wanted to terminate in advance. We also did not know yet whether or not I would need chemo in addition to surgery, which would also be taxing on the baby. I wanted to wait until the baby was born to do the surgery, but was blatantly told that if we waited, my husband would lose both the baby and me. That wasn't happening. We made the decision to move along with the surgery and the pregnancy. I accepted that whatever happens is in God's hands and that the most important thing for me to do at this moment was to fight. Fight for my body, and fight for my baby. 

My husband, Aaron, and I were incredibly anxious, but also had faith that things would be okay. The day of the surgery, May 11, was also my Grandma Selma's birthday. Grandma Selma introduced me to Aaron when she took me on a two-week tour of Israel. Aaron was on the same tour with his family, and Grandma Selma loved him so much that she kept encouraging us to spend time together. We were only 16 years old but knew we would end up getting married someday. It only got weirder when Aaron and I realized my due date was the fifth anniversary of the day Grandma Selma died. This realization was comforting for both of us. We believed that grandma was watching over us and that everything would be okay.

I said goodbye to my husband and my parents before I was admitted to the hospital on May 10, 2020. Due to COVID, not even one family member was allowed to be with me in the hospital. There were only emergency surgeries taking place in the hospital. I remember laying in my bed on the surgical floor, and finding out that I was the only one on the floor who was actually having surgery. My roommate had been in the hospital for a week with appendicitis, but instead of surgery, they were treating her with antibiotics and told her they would perform surgery when the COVID cases were down. I received a phone call from our family Rabbi and heard there were Psalms being said all over for me. At this point, I texted my husband's close friend and made him promise he would take care of Aaron if I didn’t make it.

Surgery and Recovery for the Pregnant Mother 

On May 11, 2020, I had an eight-hour laminectomy where they had to break and remove a piece of my spine to reach the tumor. The room was filled with medical personnel. Two chief neurosurgeons of the hospital, an OBGYN, anesthesiologists for me, anesthesiologists for the baby, and more nurses than I could count. I went to sleep wondering whether I would wake up pregnant. When I woke up, and they told me that everything was okay with the baby, I cried. I didn't care that I couldn't feel or move the left side of my body. I was in more agony than I'd ever experienced, but I felt so lucky to be alive and pregnant. I stayed in the hospital for eight days with no visitors because of COVID. I barely remember this time period. My husband called the nurse’s station regularly for updates and found out that my symptoms that led to the discovery of the tumor were completely gone! I was a malnourished pregnant woman and called him constantly, describing my newfound food cravings. He dropped off tons of food at the front desk of the hospital, and they delivered it to me in my room. While at the hospital, we found out that the tumor was a subependymoma. The surgeon told us this was the largest and most difficult tumor he ever had to remove. This specific tumor is actually extremely rare. They estimated this tumor had been growing in my spinal cord for at least 10-15 years, causing tons of issues that my previous neurologist had totally missed.

While most individuals who have this surgery go to rehab, I was unable to. People in rehab were dying left and right from COVID in NYC, and my family preferred that I receive my therapies at home. I had to relearn how to sit, walk, and adjust to my new neurological deficits. I have severe nerve damage, and the left side of my body doesn’t work as well as the right side. I began to suffer from extreme chronic pain on the left side of my body and was placed on several different medications to aid my recovery. We were told there were no studies with pregnant women and some of these medications. Once again, my pregnancy had to be very carefully monitored. Due to the medications she was exposed to, the doctors didn’t know if the baby would grow enough to survive. There were also fears that even if she survived in the womb, she would have trouble breathing outside of the womb. We basically just sat from June until Oct. 3 and prayed. 

On Oct. 3, I walked into the hospital ready for my epidural and c-section. The anesthesiologist came in and said, "Listen, with your story, I can give you an epidural, but I can’t promise that you’ll be able to walk out of this hospital afterward.” I ended up opting to go under general anesthesia. I woke up to a healthy baby girl, and with more joy than I had ever felt in my life. Samara Eve (which means God watched over life) continues to exceed all expectations. Although her first few days weren’t easy, and she went through some scary withdrawal symptoms, she is healthy, has met all her milestones, and has a rambunctious, precocious personality!

The Hope for Healing Continues

The first two years after surgery were anything but easy. Going back to work, adjusting to a life with chronic pain, and living with neurological deficits has been a major adjustment. I spent the first year and a half of my daughter's life seeking specialized treatments and guidance on how to ease my symptoms. I went through months where I was in so much pain that I couldn't even be alone with my own child. The support of my family and friends was crucial during this time period. I was suffering both physically and emotionally from the lifelong effects of my subependymoma. I had thought surgery would be the answer, but really it was only the beginning of many other problems. I spent a lot of time screaming in pain and crying from the suffering. I grieved for the life I thought I would have, but that clearly wasn't meant to be. I stressed over the financial strain my condition was placing on my family.  

I had a revelation the day after my two-year surgiversary. “Pain is unavoidable. Suffering is optional.” I realized that while I may have lifelong physical pain and ramifications from my tumor and surgery, I don't have to suffer emotionally as well. I began going to therapy to process this trauma and to help me adjust to my new condition. I made the decision to finish my last three classes of social work school, which I had put on hold after my surgery. I began to teach with passion again, instead of walking into the classroom with anger and frustration. My tumor, surgery, and nerve damage are no longer the main things I talk about with my friends. I've begun to accept my condition. Acceptance does not mean I like it, but not fighting it anymore has improved my mental health immensely. 

This isn't the end of my story. I have learned by now that my story is constantly changing, and will continue to evolve for as long as I live. I'm a spinal cord tumor survivor. I am a subependymoma survivor. I'm proud of how far I've come, and am excited to see where I will go.

Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates. View all newsletters