Looking back on the day my husband and I went in for our 20-week anatomy scan, we were so blissfully ignorant — we thought it would be a routine visit where they tell us the gender of our baby and we’d leave, going back to our respective days. My pregnancy thus far had been pretty effortless and uneventful. After being married for a year, my husband and I decided to stop using birth control and start trying, thinking it would take at least six months to get pregnant. LIES! We happily found out we were pregnant after only a month of trying! We were surprised, scared, but optimistic about our future. We picked out a hospital and decided to go with a midwife. I started taking prenatal yoga weekly to get ready for this impending change to my body and my life. We were taking it day by day. That is until March 24, 2016.
The ultrasound tech was eerily quiet as I look back on it. Her face was stoic and slightly concerned, but in my bliss and excitement, I missed all of the signs. When she finished, we waited for the doctor. And waited. And waited. Again, I just thought this was how it went. Everyone was busy and they were taking longer than usual, although the hospital we chose was efficient and fast to a fault. Until this point, we had never waited longer than 15 minutes for appointments.
The Maternal Fetal Medicine doctor came in, a beautiful black woman who smelled of the oils you get on the streets in Philadelphia and Harlem — she smelled like home. She slowly and calmly explained what was going on…our child’s brain was not fully developed. She thought it may be hydrocephalus, fluid in the brain. She explained that our baby had a severe form of it, that she (we found out we were having a girl) would never breathe on her own, would never walk, would need shunts and surgeries as soon as she was delivered, and had a life expectancy of about two years. I laid there, shocked, holding my belly, holding this baby that I loved so much and asked our doctor what was the recommendation.
“Pregnancies such as yours usually end in abortion,” was the response.
Abortion? I was (and still am) fiercely pro-choice. I’ve always believed that a woman has the right to choose what happens to her body and the rest of her life. But, I never thought I would be thinking of abortion, especially at this stage in my life. We WANTED this baby, we loved this baby, this was OUR baby. I felt sick to my stomach, like someone was trying to rip her out of me right then and there. We sat in the ultrasound room for what seemed like an eternity. When we decided to leave, I was escorted out to waiting room filled with pregnant women and I immediately fainted — seeing all of those women who would get to see their babies, who weren’t going to hear the news I just heard was gut wrenching.
The next week was a blur; my mom flew in from Michigan to be with me and my husband’s father also came in to support us. There was a flurry of calling friends and family, calling doctors, writing down notes, and making appointments. The next day we were scheduled for an amniocentesis and a microarray test to see exactly what was going on. We got to see her again…she was beautiful. She felt the needle coming dangerously close to her and reached out for it! We all laughed. Luckily, we had the same ultrasound tech and doctor as the day before, so that put us at ease a little. Our doctor worked diligently to find out exactly what was going on, and upon further investigation, she believed that our daughter was suffering from severe fetal ventriculomegaly. We were referred to one of the best children’s hospitals in the country, the Children’s Hospital of Philadelphia (CHOP), where we went through a day long extensive testing appointment that included a MRI, genetic testing, and checking of her kidneys. We had a team of five doctors who were amazing.
The diagnosis was true: severe fetal ventriculomegaly. If we chose to continue with the pregnancy, I would give birth at CHOP at 34 weeks via c-section. She would immediately go into surgery so that they could place a shunt in her brain to help with the swelling. She would likely spend the entirety of her short life in the hospital. If we continued with this pregnancy, I would not be able to have other children, it would be too risky. I asked why she seemed so fine in my belly, she was kicking, she seemed happy. How could you tell me she won’t walk if she’s kicking me? One of the doctors said, “You’re keeping her well. As long as she stays in your stomach, as long as you’re nurturing her, she’ll be fine. But as soon as she comes out, she’ll be in pain.” We walked out of our consultation at CHOP, looking at our parents waiting for us, and broke down in their arms. We realized that, in order to save her from the pain she would go through in this world, we had to let her go. We decided to end our much wanted pregnancy.
We were coming up against time. I am a notorious procrastinator and I didn’t schedule the anatomy scan until we were 22 weeks. In PA at the time, the cutoff for an abortion is 26 weeks. If we didn’t end the pregnancy within the week, I would have to go to another state (New Jersey) and go to an abortion clinic. I would have to walk in front of protestors saying how horrible I am when they know nothing about my story. I would have to look at pictures of dead fetuses. So, we made the appointment for April 3rd to begin dilation and April 4th to have the procedure.
“The Procedure.” I can never say what it was — a dilation and extraction (D&E) — so I’ve taken to calling it “The Procedure.” The weekend before “The Procedure” was terrifying. My husband and I went through our own bouts of doubt. Could we continue with the pregnancy? That would mean that one of us would never work again. Our baby would need 24-hour care for her entire life. What would that do to our marriage? To the person who decided to stop working? To the person who had to carry us financially? None of this matters, she’s OUR CHILD I thought more than once. I’d do anything for her…I’d lay my life down for her. I was laying in bed with my sister one afternoon and I said, “I’m having this baby, I don’t care if something happens to me — if I die giving birth, it’s okay.”
She looked at me and said, “Naomi, you don’t care, but we do. We want you here, we need you here. What would Michael do if something happens to you? Take care of her without you?”
I prayed and prayed. I laid on my yoga mat, trying to find answers, trying to conjure up someone, something, that would give me the answer I needed. I heard a voice in my head that said “Naomi, you have to let her go. She will not have a good life on earth, and the only way to ensure her happiness, the only way to keep her safe is to let her go.” That was what I needed. The next night, I had a dream about her.
She was beautiful, big eyes like her momma, big old afro puffs. She was cartwheeling in a sea of purple. She was with my grandmother, my aunt, and my best friend’s mom, all who had passed away. They were protecting her, raising her, keeping her safe, and that put my mind and heart at ease. I was confident we were making the right decision.
We went in to be dilated and were told that she would be buried at a funeral home that donated space to the hospital for angel babies. I decided against keeping her remains, it was too painful for me. The next day we said our goodbyes to her before “The Procedure. There were complications. I nearly bled to death and needed to stay in the hospital longer than we thought. While they were moving me to the ICU, my husband and I decided to name her Bernadette Joy. We used the first initials of both of our mothers and also a homage to my name (I am named after both of my grandmothers).
The after was the hardest. We went through months of testing, trying to figure out what exactly went wrong. The type of ventriculomegaly Bernadette had was only seen in babies from war torn countries and babies who have been exposed to frequent use of methadone by the mother, neither of which affected us. At first, the doctors thought it was just a fluke; one said we won the worst lottery in the world. But, we finally figured out what it could have been — I am a carrier of the NAIT (Neonatal Alloimmune Thrombocytopenia) gene. Essentially, my body can become incompatible with my child’s blood and create antibodies in reaction to “unrecognized” antigens. The antibodies can cause the unborn baby’s platelets to disappear from his or her blood stream, resulting in a low platelet count. In about one-fourth of cases, the baby can experience spontaneous bleeding in the brain. And in about one-third of these cases, this leads to fetal death. Bernadette experienced this spontaneous bleeding.
I lived life in a fog for months. I was traumatized, my world was turned upside down. While I knew it was the right decision, I played it out in my mind over and over again. I struggled with not keeping her remains, it felt like I was heartless…like by not having her with us it would be easier for me to forget her, but I’ve realized that’s impossible. My marriage struggled, my husband suffered greatly. After months and months of grief, individual, and marriage counseling, we reconnected and were able to come back to each other. About a month after that, on the day after Thanksgiving 2017, we found out we were pregnant again! When I found out, I didn’t want the pain and the trauma of my last pregnancy to effect this one, so I went back into counseling. Our grief counselor served as our doula and we decided to stay with the doctors and midwives we used with our first pregnancy. This made pregnancy after loss so much easier, they knew our story and were kind and gentle with us. At our first ultrasound, our Maternal Fetal Medicine doctor smiled and exclaimed, “The brain looks great!”
On July 13th our son, Mercer Douglas Roberson Reid was born, almost two weeks to the date that his big sister should have been born. Being pregnant during the same time of the year presented its own set of struggles. Losing my older brother suddenly at 20-weeks pregnant also left me reeling, but I focused on staying calm and present in this pregnancy. Mercer is doing great, he’s almost 6-months-old and just the happiest baby one could have. I like to think that his big sister sent him to us.
When people ask how many children I have, I say two: one in heaven and one on earth. I say her name all of the time, we talk to Mercer about his big sister in heaven. She’s a part of us and forever a part of our family. They both have made me into the woman I am now. Bernadette made me a mommy first, and now Mercer is here to complete what’s been missing from me.
The journey to healing is never over. Losing a child is a wound that never heals, it just gets smaller and smaller. Healing took time, forgiveness took time. With the help of therapists, family, and friends, the grief feels like a little pebble in my heart instead of a big boulder. The body issues I had after losing Bernadette are gone as well, I don’t look at my stomach with disgust, I no longer feel betrayed by my body. Instead of thinking about the loss, about the days and weeks leading up to losing Bernadette, I try to think of the good times, remembering when I found out I was pregnant, the lovely trip to Baltimore we took while I was pregnant, and the joy I felt when she kicked. To those who have walked down this road, please remember that, remember the good, allow your mind and heart to focus on that instead of the bad.
I don’t expect to change anyone’s mind about abortion or having to end a pregnancy, my story is my story and unless you’ve had to experience what I went through first hand, it’s hard to say what you would do. My baby can’t be here with me, and the grief is impalpable.
There are times, more times than folks know, that you don’t find out about a fatal fetal diagnosis until after 24 weeks, or you find out sooner and you need time to process and think about it. I (nor any of the families I know personally who ended their pregnancies after 24 weeks) did so because we suddenly decided that we didn’t want our babies anymore. We did so to save our children from living short painful lives. We did so because our children took their last breaths in our wombs, and instead of taking on the trauma of laboring and delivering a corpse, we went through a procedure. We did so because our lives were in danger, because we have other children and spouses and families who count on us coming through the door every evening. Before jumping to conclusions about late-term abortions, think of us, think of the women and the families who would give anything to have their babies with them, but for whatever reason that just couldn’t happen.
Naomi is a mommy, wife, sister, and daughter who lives in Philadelphia. She and her husband found out they were pregnant in 2015, and were shocked to find out after 20 weeks that their daughter, Bernadette, would not live past birth. With the help of family, friends, and licensed therapists, Naomi and her husband were able to move through the grief and welcomed a baby boy in July 2018.
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Story photos provided by the author.