We were far from ourselves. How was I supposed to enjoy my baby? How was I supposed to not stress? How do I know what is best for my baby? Rich spent hours and hours researching and I couldn’t bear the thought of googling anything. We sat down with a genetic counselor where we went through our family history. We then shifted topics to discuss the two CTDs (Marfans & Loeys-Dietz) they suspected George had and all the potential risks. The chances of having one of these diseases she spoke about were 1/20,000. The counselor told us that due to the rare nature of these diseases, genetic testing was very expensive due to scarcity of labs that offered testing. The initial panel would take 7-10 business days and would check for depletions, duplications and made sure the right number of chromosomes were present. From there a lab would have to culture more cells in order to run the second panel. This entire process could take 4-6 weeks. She continued to remind us that we had to make a difficult decision in regard to whether we wanted to run the test considering the cutoff to terminate a pregnancy in New Jersey was 22 weeks. I was 20 weeks and this was not even an option for us. I was very firm in making this clear during the meeting and on this day, I was scheduled to have an amniocentesis, which we opted out of. After a long conversation, Rich and I had decided that if there was no medical intervention and no benefit to our baby then it just seemed selfish. There was risk associated with the procedure and we wouldn’t necessarily know the severity of the disease if the genetic testing did present something.

Our OBGYN recommended us to a high risk doctor because we were now considered a high risk pregnancy. Termination was a constant reminder during all of our appointments, but it never crossed our minds. After another ultrasound and a talk with a high risk doctor, we decided to do the amniocentesis in order for physicians to better understand the level of care we would need during delivery. I cried and prayed during the procedure that my little George would be okay. Rich held my hand and I was entirely terrified when I saw the needle they would be sticking in my belly. We walked out of there in silence knowing we would have a long 4-6 weeks ahead of us.