For my daughter, Shayla Brooklyn, I love and miss you so much. I’m so sorry I couldn’t do more to protect and bring you safely into this world. I never imagined your death would be the only intervention to save you from suffering, and that it would be my decision- the hardest one of my life.
My husband and I had been trying to conceive for 6 months. In that time, I experienced two early miscarriages—both of which caught me off guard. I was shocked by how much I grieved—by how much I loved and felt a connection to a baby-that-would-be, given that I was pregnant for only days. In the aftermath of my losses, I felt anxious about subsequent pregnancies—the excitement and joy of pregnancy was short-lived and now foreign. Then, in November of 2020 I found out I was pregnant with my double rainbow baby, Shayla. But in place of what I should have felt, was utter terror. From the moment I saw those two pink lines confirming my pregnancy, I knew my baby was going to die.
With immediate spotting much like my last two pregnancies that both ended in miscarriage, my mother’s intuition was on high alert with this pregnancy, too. I became so convinced that my baby would not survive, that I proceeded to get weekly ultrasounds- specifically nine scans during my first trimester. I somehow thought that seeing my baby on the screen for five minutes meant she wouldn’t die that week. Something I know, as a psychologist, was false reassurance. But as a mom, I was also desperate to see—to know she was healthy.
Then at 7 weeks, in the middle of a virtual therapy session, I bled out, staining my fairly new desk chair. With ten minutes remaining in the session, I placed full attention back onto my patient, actively ignoring the stream of blood leaving my body. Needless to say, I was very thankful for the past year of practicing mindfulness to focus all of my attention outward rather than on my own bodily sensations. I went to see my doctor the next day where I learned that I had a subchorionic hematoma in my uterus, but that my baby still had a heartbeat. She still had a heartbeat—I literally couldn’t believe it . He also said I may miscarry, have a stillbirth, or be fine—pretty much all outcomes were plausible at this point. Two days later, I had another bleed-out and immediately got a scan, only to find out that my baby was still doing fine.
I proceeded to get serial ultrasounds until I heard every expectant mother’s most desired words: “your baby looks perfect.” Perfect. Tests from genetic and chromosomal disorders came back normal and I was informed that I was having a daughter—a healthy girl. It finally felt a little safer to announce our news to the world, but when asked how I was doing, I confessed how anxious and eager I was feeling for the anatomy scan—a fetal diagnostic scan that occurs halfway through pregnancy.
With my somewhat newfound reassurance of the perfect baby growing inside of me, I waited for that scan. It took all of my willpower for me to not get a scan during the following 7 weeks leading up to it. I told myself that my fears were all in my head, and I worried I was manifesting problems. After speaking with other women, I now know that our intuition is strong; many women whose babies are sick have an odd sense that their baby is not okay. Somehow, we mothers just know even when the science says otherwise.
Instead of a scan, I came up with a new way of “knowing” my baby was healthy: daily weigh-ins to ensure I was gaining weight; constant belly poking to feel her kick back; and asking my husband if I looked bigger every day.
At 19 weeks pregnant, I headed to the long-anticipated anatomy scan alone with my baby and without my husband, due to the COVID restrictions. While in the waiting room, a 39-week pregnant woman exclaimed that my belly looked small and I felt so offended, trying to then push out my stomach to show her how big it could appear. Alone, I laid on the table and listened as my ultrasound technician told me everything looked good, but the umbilical cord did not have adequate activity and my baby was measuring small. She wanted me to see a specialist.
Since the maternal fetal medicine specialty clinic in Los Angeles did not not have availability for over two weeks, I proceeded to call them multiple times a day, with my voice shaking and tears rolling down my face, to be seen sooner. The receptionist squeezed me into the schedule only days later, stating that she always tried to make exceptions for emergency situations. At that moment, I felt despondent hearing that the top doctor in LA also thought that I required immediate attention. My once perfect baby was now an emergency.
During the appointment, I learned that I had placental insufficiency because the umbilical cord was inserted at the edge of the placenta rather than in the middle. Due to my clinical picture, the doctor was extremely concerned I’d develop pre-eclampsia and encounter severe medical issues where the only intervention would be to deliver my baby prematurely. They also noted two bright spots on her heart. But the biggest concern they noted was there was something off with her brain—it hadn’t developed properly. I was told to come back in two weeks, and during that time, my medical team grew from four doctors to twelve.
Two weeks later and at 21 weeks in my pregnancy, I received a phone call from my OB/GYN urging me to terminate the pregnancy. He said he was surprised I hadn’t already miscarried, and if born, she was at high risk to die early or live in a vegetative state. I was shocked, devastated, and felt confused. How could this be? Everyone told me she looked perfect at 12 weeks and now I was being told she should have died. I did not want to believe him so I did everything in my power to change the ending of this story.
Following that phone call, my life felt grueling. Many times, I woke up in the middle of the night to my daughter kicking my tummy and I’d burst out in tears, frightened for the future. My sweet husband would curl up behind me, telling me it was okay to cry. Every time I felt her kick, I had a wave of guilt, sadness, and grief wash over me. Her kicks that once gave me reassurance now held a whole new meaning.
I joined a support group of parents caring for children with my daughter’s diagnosis, a rare and severe brain disorder. I read through posts to find hope, but instead, I found stories of babies and young adults who died. I discovered most of these children suffered from multiple seizures a day, sometimes up to 800 per/day. Nope, not a typo. 800. I spoke to one mother who said she would have terminated her pregnancy had the doctors been upfront about her baby’s diagnosis. I read stories of parents who signed DNR (Do Not Resuscitate) orders for their children as they could not bear to see their child suffer in so much pain. For most, it consisted of a child who suffered from severe epilepsy, unable to walk, talk, see, or eat without a g-tube.
When I told my doctor I just wanted my baby healthy, he commented without hesitation, “that will not happen.” My doctor who literally makes his money by bringing babies into this world, told me, “You can’t keep this baby. I don’t see any other options. You should terminate this pregnancy”. In no world could I live in, hear those words, and keep the pregnancy going. This was the day my dreams crashed, my hope diminished, and I began grieving my daughter who I knew I could not safely bring into this world—my daughter who was still inside of me.
It felt selfish for me to bring my daughter into a world where she would suffer immense pain. It felt cruel knowing she could have 800 seizures a day and die from the disorder. We had to end the pregnancy to save her from a life of suffering. While sometimes confident about this decision, I also felt an incredible amount of doubt and guilt. What if all the scans were wrong? What if my baby is healthy and I’m ending her life before it even starts? But, the scans were not wrong. I saw multiple doctors using different machines- my baby’s prognosis worsened with each scan. My husband and I knew terminating the pregnancy was the only decision to protect our baby from a life of suffering.
In the days leading up to the procedure for Termination for Medical Reasons (TFMR), also known as ending my wanted pregnancy, I laid awake with my hands over my belly, anticipating her next kick; once a beautiful moment of connecting with my daughter quickly evolved into a traumatic one where I knew she was going to die. Repeating through tears, I wailed “I’m so sorry. I’m so sorry I can’t do more to protect you and keep you safe.” Sometimes, I still find myself rubbing my belly, subconsciously expecting a kick back—waiting for her to respond in the way she used to. With each unreciprocated rub, I’m brutally reminded that she’s no longer here, and my grief feels as raw as the first day I lost her.
The morning of my surgery to end the pregnancy, I kept imagining my OB/GYN running into the Operation Room screaming “we made a mistake!” I held on hope until the very last moment. Sadly, that never happened. Instead, I was pleading with nurses to allow my husband to sit with me in the pre-op room, crying hysterically, and clutching my belly, as if they were going to force me into the operation room. Apparently, I was making too much of a scene so they quickly caved in. Before they anesthetized me, I whispered to Shayla “I hope your soul can now be free.”
And then as soon as I got home from the hospital, I hemorrhaged, and my husband rushed me back where I had an emergency procedure to stop the bleeding. Except, the medications to put me to sleep for this surgery did not work; I recall every moment, feeling physically paralyzed as I tried to scream from the pain. There was a moment I thought I died-drugged out, nurses holding my legs apart, and doctors telling the anesthesiologist to withhold any further medications. After coming off the Ketamine, I broke out into a sweat. Full fever. Bleeding didn’t stop. Multiple injections into my arms. Pills in my mouth. Each time my doctor firmly pressed on my stomach I felt the blood pouring out of my body. Eventually, the bleeding subsided. My husband watched the entire procedure and although the surgery and hospitalization were traumatic, nothing compares to the emotional scars I carry with me every day.
My baby loss story is one I have been and am afraid to tell, as I fear judgment and shame from others. Baby loss of any kind is difficult to talk about but losing a wanted pregnancy to TFMR is the taboo of taboos within the baby loss community. I have urges to justify my reasoning for the decision and to pull out my health records just to show the extent of this situation—to prove my love. But in the end, that doesn’t matter. As a psychologist, I know that the mental health field has failed pregnancy loss mamas out there, and specifically, the TFMR mamas. I never learned about this in graduate school or any of my training. I honestly didn’t even know that TFMR occurred. I am sharing my story because the only thing that brought me comfort during the end of my pregnancy was reading other women’s stories like my own. I want to share the different baby losses that occur and to share my story of my daughter, Shayla Brooklyn.
Even though the termination for medical reasons is a huge part of my story, at the end of each day, my emotional experience of grief is similar to that of other loss moms. I feel sad. I long for my baby girl—I miss and grieve the loss of her every day. I feel so sad that I couldn’t bring her home with me.
As a CBT and DBT Therapist, I thought that I had a magic wand to rid myself of painful events. Disclaimer- I do not! Clearly, practicing what I preach with my patients was important in learning how to create a life that I want to live, even without my baby. Some days are easier than others; I easily get triggered and feel waves of sadness and loss. But what I realized throughout the past few months is that I have a desire to help other women cope through losing their baby after they have made this gut-wrenching decision. Through my private practice, I am going to offer group and individual therapy, as well as online courses for TFMR moms. This is a passion project where I have the capacity and ability to integrate my personal experiences and professional knowledge to create a treatment for TFMR moms.
You can learn more through my website www.tfmrpsychologist.com and Instagram: TFMRpsychologist. If you are a provider who wants to work with women who have a TFMR, please complete this form on my website to be included in the TFMR Therapy Directory.
If you are facing or have undergone a termination for medical reasons, I see you. The TFMR community is bigger than anyone could ever imagine and yet, most of us live in silence. You are not alone. This is a compassionate decision, based on love, doctors’ opinions, and all the evidence and data you have in this moment. I know you love your baby and are wanting to save your baby from suffering. When I was seeking support, I saw many resources advertised to moms who experienced “miscarriage, stillbirth, or infant loss”. I felt excluded from a group that should be welcoming me. I hope that soon women do not need to face a subsequent trauma of not being welcomed into a support group. I hope that these groups will move towards more inclusivity; a group for “miscarriage, stillbirth, termination for medical reasons, or infant loss”.
While nothing or anyone can take away the pain, you don’t need to suffer alone. To all my fellow TFMR mamas, thank you for gently holding my grief to ease the pain of my suffering. Your resilience is freaking inspiring and keeps me going every day.