When I received my fetal and neonatal alloimmune thrombocytopenia (FNAIT) diagnosis in 2020, I truly didn’t understand how I was going to handle this rare disease.
At 25 years old, I had never heard of FNAIT, nor did I have professional medical experience to understand what it all entailed. It felt as though I was walking into the darkness with no one else who understood what I was going through with the diagnosis.
While my high-risk OBGYN did his best to explain to me what FNAIT is and what it meant for me, my baby and the future, I was still in shock from the loaded information that was being thrown towards me, and not to mention, a worldwide pandemic.
The difficulty of being misunderstood
I remember after receiving my diagnosis, it was so difficult to explain to loved ones what FNAIT is and how I would need to do weekly IVIG infusions. What made this situation even harder was that I didn’t understand the diagnosis fully myself.
Even now, in 2025, I have seen that there is still plenty for me to learn about FNAIT that I didn’t know before. Thanks to more research and easy access to others through social media, I have become more educated about FNAIT.
Discover helpful links and resources for FNAIT
How to connect with others
It wasn’t until a few years after my diagnosis that I decided to try and reach out to other moms with FNAIT. The first way I did this was through Instagram. I used the hashtags FNAIT, FNAIT moms, FNAIT baby and more along these same lines.
Although it proved to be tricky finding other women with this rare disease, I found a few, and just so happened to find a mom who lived in the same city as me. It was amazing to hear her story and talk to someone who completely understood what I went through. I’ve done the same search through TikTok and found another mom who lived close to my new city and was able to connect with her.
There are many resources available through social media. Only a few months ago, five years after having my last baby, I discovered a Facebook group for FNAIT and made connections with women from all around the world.
Taking care of your mental health
While it is extremely important for us to connect as humans, we need to pay close attention to our mental health. Through all my social network connections with other FNAIT moms, I started to develop what my therapist called “survivor’s guilt.”
It became apparent that seeing other parents who lost their newborns due to FNAIT complications was really starting to affect my mental health. Thankfully, I had already started seeing a licensed therapist before this, and she has helped me through the emotions that can course through you when this happens.
Having FNAIT can be emotionally exhausting, even after you are done having children. I thought that I had recovered fully from the experience, but I didn’t understand the mental toll that was still affecting my life.
Connection is vital for us as humans, but understanding our limits and boundaries is equally important. If you have considered seeking professional mental health help, it is a wonderful way to work through medical trauma and learning healthy coping mechanisms.
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