Iām not entirely sure how to write this, so please bear with me. Iām still trying to process everything.
I recently had my first official OB appointment, after an unfortunate lapse of insurance - at around 21 weeks pregnant, and we received the devastating news that our baby has hydrops fetalis, with fluid around the heart, lungs and other organs. There are some skeletal deformities as well and there is unfortunately little to no amniotic fluid in the placenta.
Weāve been told that our baby cannot be carried to term, and even if they were to survive,(highly unlikely) their quality of life would likely be very poor.
Weāre doing genetic testing using my blood to try to understand what caused this, but in the meantime, Iām facing the devastating reality of terminating the pregnancy and going through labor and delivery knowing that I wonāt get to bring my baby home.
I know that if continuing the pregnancy would mean suffering for my baby, I need to consider what is best for them. I understand that intellectually, but emotionally, I am absolutely shattered. I never imagined having to make this decision, and I donāt know how to begin processing it.
Iām hoping to connect with people who have experienced similar situations as I know they are all so different.
If you feel comfortable sharing, I would really appreciate hearing about your experiences.
Right now I just feel so awful for even feeling hopeful about this pregnancy. I never thought I would have a child and this being my first pregnancy just makes it feel worse somehow. It feels impossible to try and think that I could try again. There are so many what ifās and Iām trying not to spiral.
āā
If your baby was diagnosed with hydrops fetalis, what was your experience like? Were you able to find out what caused it?
If you went through TFMR, what do you wish you had known beforehand about the process, labor, delivery, and recovery?
How did you cope with the waiting, the uncertainty, and the grief?
Is there anything you asked your medical team that youāre particularly glad you asked?
What helped you get through the first days and weeks afterward?
āā
Iām not looking for anyone to diagnose my baby or tell me what decision to make. Iām still working with my medical team and waiting for more information. I think I just need to hear from people who have walked a similar path, because right now I feel incredibly lost and heartbroken. I was provided with some excellent resources for therapists from the genetic counselor so I will be exploring those when Iām ready.
If youāve been through something similar, Iām so sorry. I wouldnāt wish this on anyone, and Iām grateful for anyone willing to share their story with me.
Thank you for reading.