Pregnancy comes with many joys and so much excitement, but there can also be harsh physical side effects, including weight gain, nausea, fatigue, muscle soreness and more. While pregnant women go through the motions of daily life coupled with the never-ending list of pregnancy symptoms, rare diseases or other underlying health issues can experience even more symptoms.
This was what I experienced when I was diagnosed with fetal and neonatal alloimmune thrombocytopenia (FNAIT)–in addition to typical pregnancy worries and stress, my mental health suffered due to my rare disease.
Navigating my FNAIT diagnosis during the COVID-19 pandemic
During my first pregnancy in 2017 to 2018, I had what many would call a typical pregnancy with little to no issues. A few years later, I found out I was pregnant on Dec. 31, 2019 with my second child only months before the world shut down due to the COVID-19 pandemic. I was blissfully unaware of the mental health struggles that would come with lockdown, caring for a toddler, being pregnant and the drastic shift of daily life now having my husband at home all the time.
Before this, I had suffered from depression and found ways to handle it. Unfortunately, being forced to stay home all the time was extremely difficult. Around this time, I was also advised by my OBGYN to visit with a high-risk OBGYN due to the complications that happened during birth with my daughter in 2018.
I was diagnosed with FNAIT in May 2020, and I immediately started weekly IVIG infusions. Scheduling my weekly IVIG infusions with an in-home nurse during COVID proved to be extremely challenging, and this new reality of mine became too overwhelming for me to handle. The infusions left me exhausted. I became overcome with anxiety around the health of my unborn baby and if he would be healthy when he made his arrival. Very quickly, depression found its way into my life again, and I would
spend many days crying from the stress offighting insurance to accept the lifesaving IVIG infusions and coping with the all the unknowns surrounding FNAIT.
Learning to prioritize my mental health
I wish I could say that when my pregnancy test turned positive,I was happy to be pregnant again and add another child to my family. Unfortunately, that moment brought up the birth trauma I experienced with my first and left me scared of what might happen this time. My first baby was born without me knowing of my FNAIT, and because of this, she received a platelet transfusion only a few hours after birth and worried us all when the doctors thought she had a hematoma on her head from being vacuumed. Thankfully, her scans came back negative for a hematoma, and she then progressed very quickly from the platelet transfusion. When I was made aware of my second pregnancy, she was a happy healthy toddler.
Looking back on this moment in my life, and after much therapy, I can recognize what I did postpartum with my daughter to avoid acknowledging all the horrible things that happened when she was born. It became very common for me to hear from loved ones, “We are just so happy that she is O.K.!”. In those early days, with my miracle of a newborn, I felt I just needed to be happy that she was alive. Because of this, I pushed down any negative feelings around the whole experience, but those feelings would eventually resurface, and I still struggle with them to this day.
How to support mothers with difficult deliveries
Now, my daughter is six years old, happy and thriving in her first grade classroom with many friends. I recently started seeing a therapist for reasons other than my past birth trauma, but inevitably, those vivid memories came up in many of my therapy sessions.
After bringing these memories to the forefront of my mind, I see how I could have better prioritized my own mental health. When a loved one experiences a scary birth like mine, of course, most people’s first instinct is to just be happy that both mom and baby are healthy. Many times, especially in western society, the entire focus is placed on the baby, leaving the mom forgotten.
If you have a friend or loved one going through this experience, it is never a bad thing to reach out and be a listening ear. The early postpartum period can be extremely isolating and even more difficult when dealing with PTSD. Validate the mother’s experience by sharing how happy you are that she is ok, but that what she went through must have been scary, hard, and may have left her feeling many different emotions. Let her know you are there for her and how great of a job she is doing in her new role.
These are the things I wish I could have had in those early days, and my only hope is that more mothers have a better experience than mine.
