Helping Save Mothers and Babies from Illness and Death Due to Preeclampsia

At the time of my son's birth, I was an Assistant Attorney General at the Office of the Attorney General of the State of New York. I had been a practicing attorney for over 12 years and it was my second pregnancy. What I didn't know at that time, was that I had been "weathering" for a long time. Weathering is the theory that the accumulation of the everyday stress of navigating racial inequities, microaggressions, injustices, etc. over time internalizes into the body of black women causing accelerated aging, which can happen way before she becomes a mother, and leads to the pattern of racial disparities in maternal health and birth outcomes that increase with maternal age. So, we see more black moms developing pregnancy, birth and postpartum complications; delivering prematurely; and suffering from perinatal mood and anxiety disorders.

Given this, I realize now that my NICU journey started way before my son ever entered the NICU. It actually started before he was even conceived. I’m a mom of two young children. A little girl born in July 2019 and my NICU baby, a little boy, born in November 2021. I’m also a black mom.

During my first pregnancy, I was diagnosed with gestational hypertension. I didn't worry too much about it. My blood pressure hovered steadily around the 140/90 range. I started baby aspirin around 12 weeks and was induced at 38 weeks. Everything went to plan until immediately after the actual birth, when I developed a postpartum hemorrhage which went untreated for several hours due to neglect. A week later, I was readmitted into the hospital due to a spike in my blood pressure but without any changes in my labs, I was prescribed the blood pressure medication, nifedipine and sent home. I never got off of nifedipine. I'm still on it to this day turning my gestational hypertension into chronic hypertension. I also developed postpartum depression, postpartum anxiety and possibly PTSD. All of which also went untreated and when I reluctantly conveyed my feelings to my obstetrician, I was told to "find a therapist" without ever being screened or offered any resources. I tried to "find a therapist". I called my insurance company, got a list of providers who supposedly specialized in "women’s issues". I called every one of them but no one called me back. I felt worthless, like I had failed and I sunk deeper into the depression. I never found any assistance and I proceeded to "cry it out", until I didn't cry anymore. I recovered on my own, more or less, but I'm honestly not sure how I made it through that one.

With my second pregnancy, I told myself things were going to be different. I reluctantly went back to the same obstetrician because we already had a game plan; baby aspirin at 12 weeks and inducing labor at 38 weeks. Plus, I was already on the nifedipine. My blood pressure readings were beautiful, 107/74 and the like. I was proud of myself. I was checking my pressure daily, exercising, eating well, doing my best until roughly 31 weeks when I noticed that my pressure was slowly creeping to the 130s. This immediately triggered me to start having panic attacks, which of course wreaked havoc on my pressure, causing it to spike daily. I didn't know what was going on. I was worried. I contacted my obstetrician and explained the situation to her. I asked her to possibly increase the nifedipine but she told me that the pressure readings weren't consistently high enough to do that and that I should just try to take deep breaths. A little over a week later, I arrived at the hospital for a scheduled ultrasound, non-stress test and prenatal visit. It was then that I was admitted and diagnosed with severe preeclampsia and HELLP syndrome. I didn't realize that anything was seriously wrong. I felt fine overall and I had none of the typical preeclampsia symptoms.

I was put on magnesium to prevent me from having a seizure or stroke. The magnesium made me feel horrible and it was then that I realized that something was really wrong. Within 24 hours of being admitted, things rapidly deteriorated. My liver enzymes were doubling and sometimes tripling, every few hours. I had to be induced immediately and the labor was taking longer than the doctors anticipated. The doctor told me that she was afraid that I would bleed out due to something called "DIC". I was scared. I was alone and I could already feel the depression setting in. I asked for the hospital's social worker. Once she arrived at my room, she sat down and immediately told me that she didn't have time to talk to me. She told me to download the Calm App, go meditate and she immediately left. I was shocked. I felt disregarded, disrespected and dismissed but I didn't speak up. I had to get through this birth. I had to be "strong" and that meant putting my own feelings aside.

My son was delivered at 32 weeks + 3 days and spent 22 days in the NICU. This birth was very traumatic. I was unprepared for what was supposed to be a beautiful experience turning into a nightmare. I was naive in thinking that I was safe. I was married, educated and this was my second child. I didn't realize that I had a target on my back, simply by being pregnant while black. After the baby was born, he was whisked away to the NICU and I was left completely alone. Despite having major complications and a near death experience, I was discharged on the normal schedule for a vaginal delivery (baby was delivered on Friday and I was discharged on Sunday). When I expressed concerns about being discharged so quickly, I was told "let's see what happens" (two days later I was back in the hospital under observation due to a severely elevated blood pressure reading and again 5 days later and then again one week later). On the day that I was discharged, my husband, who was stuck at home with our then two-year-old because she was not permitted as the hospital due to covid restrictions, was able to join me at this hospital. We entered the NICU and my husband was able to see our tiny baby boy for the first time. He was covered in tubes and surrounded by beeping monitors. It's an overwhelming and surreal experience. I was dealing with concerns for my own health and fear about the health of my baby. I was in a fog.

My husband did not yet have the wristband that was needed for access into the NICU. I informed the nurse that my husband needed a wristband. She walked over to us. She looked at my husband, who is also black, at me and at the baby. She then proceeded to ask if I was sure that my husband was the baby's father. She asked this twice, loudly and in front of the entire NICU. She asked this because our baby was born very light in complexion, which is not uncommon for black babies. However, to ignorant individuals, he did not appear black. I was in such a fog that I did not recognize the insult from her. I simply confirmed the baby's paternity twice, at which point, she asked me whether my husband and I were legally married. The legal status of our marriage was irrelevant to her role as a NICU nurse caring for our child but I confirmed that we were legally married and did not make any waves. It was not until the ride home when it dawned on me that the nurse in the NICU did not realize that the baby boy in her care was black. He was the only black baby in that NICU at the time. His race should not have mattered. She knew he was a premature infant who needed her help. However, whether consciously or unconsciously, race factored into it. I was already worried about my health and the baby's health but now, I had to worry about him being mistreated because he is black.

Throughout my son's NICU stay, I did my best to be as pleasant and kind to the staff as possible. I felt like my son already had one strike against him because he was black and I did not want to give them any reason to mistreat him. I was at their mercy for his care and so I was cheerful, I laughed and I bought cupcakes. I did not dare cry or give them any reason to dislike me. They seemed to tolerate me and their treatment of me improved when they found out that I was an attorney. Absurdly, I guess that made me more tolerable. It's beyond unfortunate that I felt that as a black mom, I had to perform for the staff as a way to keep my son safe.

Despite my cheerful exterior, I was falling apart on the inside. I felt angry, ashamed, scared, anxious, guilty, broken, alone, confused and jealous of anyone who got to enjoy a "normal" pregnancy. I had developed PTSD and I didn't know what to do with these feelings. To avoid losing time on my maternity leave while my son was in the NICU, I went back to work immediately (doctor approved). I gave myself no time to rest or heal. When you have preeclampsia, it's different than many other pregnancy complications. It is a complication that leaves you with a lot of guilt because something goes wrong with your body. You feel that if you could have somehow held on to the pregnancy longer, then none of this would be happening. I felt like my body had failed me, the baby and my entire family. No one told me what to expect when the unexpected happened. On some level, I knew that it wasn't my fault but I didn't believe it. I still blamed myself. I know now that these feelings were irrational but feeling don't have to be rational to be real. I needed help and I wasn't sure where to turn. I contacted my doctor's office several times but she was of no help. I, eventually, spoke with a nurse who told me to ask in the NICU, which made sense because they should be used to the emotions that come with a traumatic birth. However, when I very politely asked the nurse on duty if she was aware of any NICU support groups for parents, she told me that she would get the social worker. Recalling my prior experience with the social worker telling me to download the Calm App, I very kindly said that it was ok and that the social worker was not needed. At which point, the nurse responded by saying that she had to "report the incident". Those words rang loudly in my ears and I will never forget them. The incident was me asking for help. At that moment, I told myself to never ask for help again, ignore my feelings and suffer in silence because I had no idea who this nurse was going to report me to. I had heard horror stories about black parents being reported to child protective services for the smallest reason or for no reason at all. The social worker was called and when she arrived she simply asked me, "did you download the calm app?" It would be hilarious, if it wasn't so discouraging and painful. I finally found help several weeks later by doing a search on Google. Turns out, there are support groups and other resources for NICU parents, parents suffering from perinatal mood disorders and parents who are preeclampsia/HELLP survivors. Who knew? It was through Dr. Google that I finally started on the road to help and healing. It is beyond unfortunate that none of my medial professionals were willing to help or direct me to these resources. However, I definitely count myself as fortunate because I survived and I found help so that I no longer had to suffer in silence. My heart breaks for all of those moms for whom help never comes or does not come in time.

Whether it's due to weathering, toxic stress, microagressions, system racism, unconscious bias, neglect or any one of the host of other reasons, black moms are more likely to suffer from a pregnancy complication, such as preeclampsia, which may lead to a traumatic birth, NICU stay or worse. It's like we are at war and instead of being allowed to simply focus on our health and the health of our families, we are continuously required to fight for equity. This has to change. Further, once you have had a traumatic birth experience or severe birth complication, you are at higher risk of developing a perinatal mood and anxiety disorder. There is so much stigma, lack of information and misinformation surrounding perinatal mood and anxiety disorders that many parents end up needlessly suffering in silence when help is available. We, all of us, have to change this. We are continuously hearing and reading about parents who have become martyrs to these wars. We have to uncover these blemishes in society and stop pretending like everything is ok. Ignoring these situations will not make them go away and only makes them stronger. We have to expose this darkness to the light so that it can no longer live in the shadows. If we can do this, then together, we can all thrive.

Tiffani's Story