On February 2nd, Tanaz Rivera Hicks was silently born. At 20 weeks gestation, Rich and I chose to terminate due to a rare neural tube defect that was threatening our baby’s life. Please help to honor her by bearing witness to our story, and acknowledging her short life.
Content Warning: miscarriage, termination, abortion, fetal abnormality.
I found out I was pregnant again on Oct 11, 2017, exactly one year to the day of finding out about my first pregnancy. After miscarrying the previous December, we hadn’t intended to get pregnant, and we certainly weren’t ready. I was upset and scared to be pregnant again.
Within a week of finding out about this pregnancy, I thought I miscarried, and mourned the loss of the baby. A week later, we found out the baby was still alive, but measuring small with a slow heartbeat. A week after that, the baby appeared to be ok, and measuring on target. We were 7.5 weeks pregnant, with a due date of June 18, 2018 (the day before Rich’s birthday). A week and a half later, I started cramping and spotting. I dreamt that I miscarried a baby that was about 18 weeks gestation. This was surely an omen of things to come.
On November 22, 2017, Rich’s cousin Shaquetta passed unexpectedly. She was like a little sister to him. Before flying out to her funeral, I had my first trimester appointment. Everything looked good, and we were cleared to fly. It was the first time we had assurance that the baby was stable and doing well. We were relieved, but torn, as we headed back home to mourn and be with our family.
After we got back, I was reluctant to do genetic testing. With so many unknowns and false positives in early pregnancy, I didn’t want to pile on any more stress for me, or the baby. I decided I’d rather know of any potential issues, so we would have time to research and be prepared to support our baby however we could.
We went to the perinatologist on December 14, 2017. We watched in amazement as our tiny baby kicked and squirmed on the screen. It was the first time we were excited and hopeful. Shortly after, the doctor told us the bad news: there was a mass on the baby’s forehead, which he was 90% sure was a frontal encephalocele. However, he couldn’t confirm a diagnosis because the baby hands were shielding her face the whole time. He recommended a follow up in 2 weeks.
An encephalocele is a rare neural tube defect where the skull doesn’t close properly, and a portion of brain pushes out. The defect is typically life threatening, with most cases ending in miscarriage or infant death. A non-life threatening encephalocele often results in a variety of serious mental and developmental deficits.
We were emotional, and knew that termination was on the table. We took the time to research all possible scenarios, but our options looked bleak. We went home for Christmas and spent time with our families, preparing emotionally for what was to come. On December 29th, the doctor confirmed that it was indeed an encephalocele, and it was more serious than any of us initially thought.
We were crushed, but we had to get as much information as possible. We went for a second and third opinion, and had many ultrasounds, and an amniocentesis. All the information and opinions we received said that it was a really bad case. In our last ultrasound, the encephalocele did not appear to be covered by skin, and the amnio was tinged with blood. She was likely to not make it to term, and if she did, she would not live very long and would be in a lot of pain. We were at worst case scenario.
We decided that termination was the best decision for all 3 of us, but I was still not ready. I needed to bond with our baby first, so we decided to name her. With all that she had been through already, we started looking for names around the word “tenacious”, or “tenaz” in Spanish. We came across Tanaz, an Arabic name meaning “delicate body” and “worthy of praise”. It was so fitting. Within the week, I started to feel her first kicks. It was all so bittersweet. I knew that for my own process of letting go, I need to give birth to her and spend time with our baby.
On Feb 2, 2018, I was induced and gave birth to Tanaz Rivera Hicks. At 20 weeks gestation, weighing 7.8 ounces and measuring 8.5 inches long, she was as small as a baby doll. She was tiny, but so very developed already. She had features just like Rich, same nose and lips, broad shoulders, and long fingers and toes. And as expected, her defect was really apparent, with no skin to cover it. It was heartbreaking to meet her this way. My parents were here for the delivery, and we all got to spend time with her.
We had a small memorial for Tanaz at home. We decided to have her cremated and chose a small, simple, but beautiful urn. We get fresh flowers for her every week, and have lit many candles in her memory. I also donated my breast milk to the Mother’s Milk Bank in her name, hoping that ending her short life would save another baby in dire need. We tried to honor her, and this process of life and death, at every step of our journey with her.
It’s all been incredibly emotional. I think about her all the time, and have been mourning the bond we shared. It has been very difficult, but I am so grateful to have been Tanaz’s mother, even for a few months. And even though I won’t get to see her grow up, she will always be my first born child, and always a central part of our little Rivera Hicks family.