"The Brain Doesn’t Look Good"Kristen Malick, BSN, RN, CCRN Sep 13, 2022
Prior to February 2020, I never heard of perinatal palliative care. Perinatal palliative care is medical services offered to families who learn that their baby is going to die before or shortly after birth. Parents often find these services after they decide to continue a pregnancy following a prenatal diagnosis of a life-limiting condition. I wish I knew more about these services after receiving my prenatal diagnosis for my daughter. I found out in mid-November 2019 that I was pregnant for the second time following a miscarriage a few years prior. At the time my boyfriend and I were scared but excited. We are both nurses and have seen things, and done things for our patients, that we would never wish for any of our family members. There are only so many medications and medical interventions one can receive in order to have a decent quality of life. My boyfriend and I had both promised each other that we would never push for heroic measures if there wasn’t a meaningful recovery following an accident or surgery.
Following three unsuccessful attempts at NIPT testing, my OB sent us to a maternal-fetal medicine (MFM) doctor for a more in-depth ultrasound at 16 weeks. Laying there, blissfully unaware of how this single appointment would change our lives for forever. The ultrasound tech said she wasn’t getting the pictures she needed and went to ask the doctor if he wanted a different angle. You know, you read the stories of the tech leaving the room to go ask the doctor something and the mom on the table always knew at that point something was wrong. Not me, even with all the stuff I see at work. I was still not processing what was happening when the doctor rushes in and picked up the ultrasound wand and started doing an exam. He got straight to the point (and was rather blunt) with all the things he saw wrong. “The brain doesn’t look good, something is wrong with the heart, and the kidneys are small…etc.” I was 16 weeks pregnant at this point and the baby was only measuring 14 weeks. He said these signs pointed to chromosome abnormality and the only way to confirm would be to do amniocentesis.
Looking back now on what he said next kind of opened our eyes but at the moment my boyfriend and I were heartbroken and needed some support. The doctor said something to the effect of it would be best for me to miscarry so we wouldn’t have to make any decisions. I often feel like if I knew about perinatal palliative care, our journey would have been an easier one. There was so much grief and heartache, and then to spend the next two years trying to conceive and blaming yourself for not being able to save your baby. No mother should have to go through that. I hope other mothers facing a similar situation find the peace and comfort in perinatal palliative I wish myself and my family had.