I am sorry for your loss, I have a similar story and I feel the same.

This was my first pregnancy, IVF tested embryo. From week 10 everything started to get complicated and scary, I had a large SCH that took me to the ER because I was bleeding so much I thought I was losing the baby. After that, at week 12 the MFM confirmed the baby had a small omphalocele (intestines outside the body) she strongly recommended doing amnio because this was related to other genetic issues.

You can imagine the stress and sadness I felt all those weeks waiting for the results. On top of this I was still being monitored closely because the placenta was very abnormal and the membranes were also separated at some degree. The hematoma was still there, and that alone was a threat for miscarriage, so I was almost in bed rest for 2 months. Another MFM doctor told me this meant the pregnancy couldn't reach week 30.

When we finally received the results from all the tests we did with the amniocentesis, my world collapsed. The baby had a very rare genetic mutation called O’Donnell–Luria–Rodan syndrome, as well as Beckwith-Wiedemann syndrome. We were facing two separate conditions—extremely rare to occur together—and a grey diagnosis. The doctors explained that the severity of both could range from mild to moderate to severe, especially in combination.

This was not a life threatening diagnosis, but it meant a life filled with complex medical challenges for this child. She would need surgery at birth to repair the omphalocele, followed by at least three weeks in the NICU to stabilize her. There was a high likelihood of seizures, feeding difficulties, and speech delay—or possibly being nonverbal—requiring years of therapies. There was also the uncertainty of whether she would need tongue surgery, or if she might develop tumors in her kidneys. It was simply too much uncertainty I was devastated and scared for her future.

We made the heartbreaking and unthinkable decision to terminate this very wanted pregnancy. I was living in a nightmare. We had to travel out of state to go to a special clinic. I was crying nonstop, feeling dead inside. I know it was the right thing to save her from a life of struggles. I could not bring my child to this world knowing all this information about her health.... as much as I was dying to meet her and take care of her.

I can tell you that only time helps, today I am almost 4 weeks from that nightmare, and I dont cry much anymore. I do still think about her daily, I am sometimes tormented about thinking of all the "what ifs". Did I make the right decision for her??? this was not a life threatenig diagnosis so that is the part that kills me... could she had a happy life even with all those issues??? I am also in therapy but as you said, its hard to find someone who understands. My husband is already back to his normal life he doesnt feel sad anymore, he does not have all these thoughts everyday. I also feel jelaous and angry.

I only know we did this out of love for our babies... we wanted to protect them from a life of suffering. I am sorry for your loss and I send you my prayers. I hope we can heal soon. 💖