What I have learned from this experience is that the hardest thing a parent faces is making decisions for our children. Weighing what we feel is right, the facts presented and knowing you will have to live with your decision. People are consistently saying there is no right or wrong answer. Ok—but tell my heart that.  

For reference, yesterday we had our 20-week anatomy scan. Our routine MFM (Maternal Fetal Medicine) doctor was not available, and we had to see a different doctor. We have seen her before when my only risk was my diabetes. I did not not like her, I just observed that she was a give it to you straight person. She lacks empathy and at times I think forgets we are not doctors and some of her terminology goes over my head. In comparison, our routine doctor, Dr. Vinson, I appreciate her more. Dr. Vinson is incredibly soft spoken, she breaks things down, she gets on your level, but she can be emotional. I do not need you to cry when I am trying hard not to cry. During this visit, all his previous named ailments were still there (no water to wine miracle for us).  

• Schizencephaly (cleft brain) 
• Missing radius in both arms  

• Hands in a closed position, turned inwards  
• Measuring 2-3 weeks behind in different areas  

They discovered this visit he also has Lumbosacral Myelomeningocele aka Spina Bifida. There is a small mass in his brain cavity that is indicative of a blood clot, suggesting he must have had a stroke. *Deep breath in…and exhaaaaaale* 

The new doctor came in, sat down, and asked, “Ok how much do you know.”  Me, the control freak, slight OCD person that I am, opens my notebook and I start listing off everything we have been told since Dec. 15^th and everything I have learned regarding that. I then asked, “so what did you see today.” This is when she told me about the Spina Bifida, the stroke and how I really need to consider terminating. Now that I have had time to think about what she has said I truly feel like she was convincing me based off a possibility and not what was happening. She told me that this is a huge risk to me. I asked what factors are we basing this from? She said they are not present now but could. I replied, telling her that right now it is not a present risk and therefore that is not going to be my option.  

From the beginning Jason and I both decided that in our son’s best interest and ours that we would choose to allow him and God to sort out his future. I did not want that burden. I did not want to be the one to decide for him. If I could be told without a doubt he was in pain or he was suffering—absolutely. The decision would be easy. But that cannot be told to me. Therefor we would wait and see. I felt that if he were fighting for tomorrow, I would continue to fight along with him.

For the record, I am pro-choice. It is my opinion that no one person should ever feel entitled to decide for anyone else but themselves. And that is that. I hate how this option is pushed so hard on parents in our position. As if you could just throw it away and start over like nothing ever happened. I also do not judge those parents who decide that is their best option. Truly whatever is best for you and what you can live with is the path you should take.  

After Oliver is born, we opted for palliative care, aka comfort care. I do not want to force a scenario for my own comfort. Another hard decision. Am I making the right decision? Am I giving up? What is right vs what is wrong? Who knows? But both Jason and I have spent many days, weeks and months coming to this decision. I have prayed over this. I ask God every day am I making the right decision. I may never know. But for now, I am at peace.  

3/17/2022 

I wrote this blog back in February. It is now the eve of Trisomy 18 Awareness Day, and I can’t believe I am going to recognize a day that robbed me of so much. In the beginning, I admired parents who were able to list all their child’s ailments, treatments, stats and medications. I thought, how are they able to retain this information? Let alone pronounce them! But let me tell you, you just do.  

When we first received the diagnosis, I was so hesitant to tell people. Even when I did, I never really explained what T18 was or what Oliver had. I did not want people to google it and see the images. All I could imagine was people thinking my baby was some sort of monster. I hate that I even let myself think this. Now, I feel like the more I talk about it, the more I normalize it. I want people to ask questions. I am happy to discuss it. Explain it. Through this experience I have learned that it’s so taboo to talk about pregnancy/infant loss. It’s like society is telling women “Hey girl, your crazy is showing. Put it away.” Or when you tell people, they say “Well you’re young, you can try again!”. What are you even supposed to say to that? My child lived-my child deserves to be recognized. All our angel babies do!  

I am grateful and humbled when I say that I have received the warmest responses to not only Oliver’s diagnosis, but also my blog and my new mission to advocate awareness of Trisomy disorders and pregnancy/infant loss. Thank you, sincerely to all of you who are following our journey, praying, and supporting us as we navigate through the hardest season, I’m sure we will ever face.