Medical, ,

The Grief, Guilt, and Anxiety That Binds Us: Part 2- Guilt

On August 1st, 2018, we hit the road. The two hour trip to Gainesville was mostly quiet. I drank my water and we rode in silence.

When we arrived to the appointment with the specialist, I had another anatomy scan. This one lasted for 2 hours and 15 minutes. There were so many “oohs” and “ahhs” and “he’s so cute!” I felt at ease, only for a moment. Soon I couldn’t tell if it were Mark’s little kicks, my bladder about burst, or a feeling that she is being TOO optimistic- settling in my stomach.

In the Gainesville High Risk Clinic’s Waiting Room

After the most detailed scan of my life, we met with the specialist. We walked into her office where she sat across from us. She took a deep breath and began. The next words that came out of her mouth confirmed what I was afraid of. This was not going to be an easy pregnancy. Based on the scan I just had, the doctor confirmed that Mark is experiencing Intrauterine Growth Restriction (IUGR) due to my low amniotic fluid, his lungs are severely under-developed, his ventricles on his brain are dilated (indication of PVL), he has a 2 vessel cord (instead of one vein and two arteries in his umbilical cord, he had only one vein and one artery), and his heart shows 2 holes, and a structural abnormality that would require major surgery around 2 months old.

It was her professional opinion that this baby was going to come soon- very soon. She was convinced that Mark would make his debut within the next 4 weeks. With a due date of December 8th, delivering in August was the very last thing I wanted to do.

We also discussed the benefits of delivering in Gainesville, but she urged us to stay in Jacksonville simply because of the location. She informed us that Mark would require a Level 3 NICU and he would be in the hospital for a long time. She drew my blood to check for any sort of infections that could be limiting Mark’s ability to grow and then sent us on our way with a hug and wishes of luck.

Our appointment with the specialist in Jacksonville was 2 days after the specialist appointment in Gainesville and this was probably the hardest appointment I have ever had. This is where the guilt really settles in.

After another detailed scan, the doctor comes in to discuss the scans that were done that same day. He introduced himself to us, sat down to look over the scans, looked up and took a deep breath.

He asked, “Before I begin, I must ask is this a desired pregnancy?” We both nodded and said firmly “yes”. Immediately after that word came out of our mouth, he continued with “…because if this isn’t we can terminate the pregnancy. The scans I see before me tell me this is going to be a very difficult pregnancy and life for you both. This isn’t going to be easy.” I was speechless.

At 20 weeks along, I was being asked if I wanted to terminate my pregnancy due to abnormalities shown on the scans. I was being told that it would be too difficult to handle my child and his conditions, whatever they were. He had a name already. The world (my world) knew he was coming. His room was painted. His crib was being delivered. I already bought his outfit. He had a name. Mark. My Mark.

I have always held that position that I would never be able to bring myself to go through with something like that. I never thought I would be in the position to have to make a choice- keeping my child or letting him go. At that moment I felt a deep sense of fear, sadness, and guilt, but I still held firm in my position.

For the most part, he was in complete agreement with the specialist in Gainesville. The complications and abnormalities were explained in great detail. Each condition only furthering the doctor’s stance on just how difficult this pregnancy would be. However, he was convinced Mark had a genetic condition called Digeorge syndrome (deletion of a small segment of chromosome 22 which causes a variety of conditions and symptoms). He was so convinced in fact he pushed for an amniocentesis to be done.

I felt it odd that a specialist who told me that I had low amniotic fluid not but 10 minutes prior, wanted to proceed with something that would take away his amniotic fluid. The fluid that allows him to move around, strengthens his muscles, opens and closes his lungs. Keeps him protected and safe. He wanted to take this away and for what? To test it for a genetic condition that or may not exist?

We had the genetic testing at 11 weeks. It was how we found out Mark was a little boy. It was “clear”. What did it matter if I had this testing or not? Did I really want to go through the discomfort of having one? Did I want to put myself through the torture of waiting for the results? What if the test came back positive? So what?

Would my strong-held position shift? Would I change my mind?

I knew the question I was asking myself. I also settled on the decision to go through with the amniocentesis. To me, it was better to know and make informed decisions based on the results, whatever they were. No matter what they were.

5 days later, the amniotic fluid was drawn and the nastiest internal war between my heart and my head raged on. The waiting game had just begun.