Possible Third Trimester TFMR After Delayed Agenesis of the Corpus Callosum (ACC) Diagnosis

I am currently facing the possibility of having to terminate my pregnancy in the third trimester due to a delayed Agenesis of the Corpus (ACC) diagnosis. I am 27w1d pregnant with my third pregnancy through IVF. The embryo was genetically tested (euploid) and passed NIPT testing at ~11 weeks.

At my 21 week anatomy scan, it was notated that the ultrasound tech could not locate the Cavum Septum Pellucidum (CSP) and Corpus Callosum. My OB NEVER disclosed this information to me. During the review of my scans, she only mentioned “we couldn’t see on thing on the ultrasound but know it’s there” and that I had partial placenta previa. She asked that I come back at 24 weeks for a repeat scan, again only mentioning the issue with the placenta.

At my 24 week scan, I knew something was up based on how long the tech was taking to scan my baby’s brain and then leaving the room for ~20 minutes to confer with my doctor that they got sufficient images. Due to scheduling issues, I had to have a split appointment where I had my ultrasound on Friday and had to wait until the following Monday to go over them with my OB. I was not told until 243d thad I had isolated absent CSP and that the corpus Callosum had been visualized, which was incorrect. NEITHER HAD BEEN SEEN ON MY ULTRASOUND. My OB told me not to panic because everything else with the brain looked normal, and that I was looking at mild speech and motor delays as a worst case scenario. I was referred to an MFM and told I would need a fetal MRI in the third trimester. I had to suggest the idea of doing an amnio and then had to fight with the MFM scheduling team to receive an appointment after a week of pestering.

Flash forward to my appointment with the MFM this week and I’m told that we are looking at isolated ACC after being told it had already visualized. I was not prepared for this diagnosis and thrown completely off guard. I received the referral for the fetal MRI and have to wait until I’m 28w5d for the appointment. I had the amniocentesis today at 27w1d and had to argue with the MFM preforming it for full genetic sequencing.

Due to the delay in disclosure, I’m now facing the possibility of a third trimester medical termination for a very wanted baby boy. Had I received the information when first discovered, I could have had an earlier repeat scan or amnio. To make matters worse, I live in Texas and will have to leave the state should we ultimately choose to terminate.

In addition to the disclosure delay, I feel like my doctor had no business speaking on what could be in store for us. Some of these children never live independent lives and require total care. I couldn’t live with my self if I brought a child into this world that could become a burden on my other children when I pass.

I know the odds are in our favor with isolated complete ACC, but I’m not I can handle the grey diagnosis.