Roland and I were 33 weeks pregnant when we went in for what ended up being our last appointment. I was listed as a high risk pregnancy, in which there were many appointments often with sad, hard to hear, life changing news. Since March, we have learned a lot about our son, his health, risks and complications. In total, I have had 9 ultrasounds since first finding out we were pregnant in December.
On Monday, June 5th, 2017 we found out that we lost our son due to many complications. Roberto James Medina was born on June 6th, 2017 at 6:03 am. He was our perfect beautiful boy.
We are at a loss for words. This has been the toughest journey we have ever been through, no one should have to bury their baby. We appreciate all of the messages, comments and phone calls we have received. If you would like to help and support, anything is beyond appreciated. All money will go to help pay for our medical costs and a memorial for Roberto. Any funds exceeding these costs will be donated to the International Mosaic Down Syndrome Association in Roberto's name. Mosaic Down Syndrome is rare and a large part of the medical community, parents and educators are not familar with MDS.
Thank you so much for your support. Below are more details about the pregnancy and the information we knew before his passing.
In March, he was diagnosed with syndactyly, a condition where they saw his fingers were fused together. In April, we went to the Children's Hospital in Cincinnati where he was diagnosed with a large ventricular septal defect, a large hole in the wall separating the two lower chambers of his heart. In May, we had an amniocentesis preformed which determined he was diagnosed with a rare form of down syndrome, mosaic down syndrome. Later that month we also were told that he had frontal bossing, a protruding forehead, and I had an excessive amount of amniotic fluid. The doctors wanted to start monitoring me 2 times a week with non stress tests. The genetics team just started preforming a more detailed analysis to find out more about his skull and any other possible issues he may have. I went in to have my second non-stress test preformed on Monday, June 5th where they told us they couldn't hear a heartbeat. They took me across the hall for my last ultrasound with Roberto, where they confirmed the worst news we've heard - there's no heartbeat. I gave birth to our son, Roberto James Medina, the next morning June 6th, 2017.
Thank you so much for all your love and support.