Miracle didn't happen. 💔

Today we went back to the hospital for the follow-up after the amniocentesis.

The miracle we hoped for sadly didn’t happen. At least not in the way we were praying for. Maybe today was our baby boy Mateo’s way of telling us that he isn’t going to get better.

The amnio results came back with no genetic disorders. All trisomies were negative. While that gave us a brief moment of hope, after another US scan the doctors now believe the most likely diagnosis is a very rare condition called hydranencephaly.

The ultrasound showed severe ventriculomegaly. The fluid space measured about 24 mm, and anything above 15 mm is considered severe. The fluid is making Mateo’s head significantly larger than expected for 23 weeks, and the doctors are concerned it may continue to grow, which could create additional risks later in pregnancy and during birth.

We were also told that if we proceed with ending the pregnancy, the procedure would be labour and delivery.

One of the hardest moments was hearing my partner say that her biggest fear is delivering our baby and him not being alive. I could hear the trauma in her voice when she said it. I don’t know how to start putting all these broken pieces together yet, and it feels like the hardest part is still ahead of us. But much more painful it can be? I really don't want to find out...

We have a fetal MRI scheduled for Monday and another hospital meeting on Thursday to go through the results. At this point the MRI may help confirm exactly what is happening in Mateo’s brain. After that, the doctors mentioned that NAIT testing or possibly whole exome sequencing might help explain why this happened.

The one thing that gives me some peace right now is knowing that Mateo is surrounded by love. His mom is still incredibly positive despite everything. And medically we’ve been told that pain receptors in the brain have not developed yet and likely will not develop given how severe the brain underdevelopment is.

Has gone through something similar, especially with hydranencephaly or severe ventriculomegaly, I would really appreciate hearing your experience.