Another ultrasound, more pictures of Gabriel. After the initial look-see by the tech, the specialist walked in. Odd, but seemingly genuine, kinda squirrelly little man. Awfully calmly he said, “We are seeing duodenal atresia, a double bubble.” He sort of explained that it meant Gabriel’s gastrointestinal tract had narrowed and had created this double bubble effect. It meant that he could not swallow and would not be able to swallow or digest anything after he was born. Very quickly he moved into, “and 40% of babies with duodenal atresia have Down syndrome as well.” That was it for me. All of this was too fast. Immediately he said that he could do an amniocentesis and have the results by Wednesday (it was Friday at the time). By knowing the results of the amnio, the doctors would have a better idea of what to look for in providing for Gabriel. As will be described in another blog, I had opted out of having an amnio. This time, I agreed.
Within minutes I had an amnio. The results were sent off. The specialist sat with my mom and I and went over a few things about the duodenal atresia…including something that had not quite sank in…no matter the results of the amnio, Gabriel would need surgery immediately after birth. Without the surgery, Gabriel would not make it. I was handed business cards for both a pediatric cardiologist and a pediatric general surgeon and told to make appointments.
I went, for 20 weeks in my pregnancy, from not even thinking about the possibilities of birth defects to having one verified birth defect and a possibility of Down syndrome. I kept thinking that we had the upper hand, Gabriel had a 60% chance of not having Downs. I sent emails that night to friends and family asking for prayers. Duodenal atresia happens in about 1 in 10,000 births. Rarity is not something common to me. This, I was told, is rare.
Funny how little medical information there is on duodenal atresia, and next to nothing on the recovery aspect of DA. I turned to forums for mom’s on baby sites. I kept reading mothers posting things like, “My child has been diagnosed with DA and Down syndrome. I’m not concerned with the Downs, but I’m scared for the surgery…” and so on. I thought, how could you NOT be concerned or worried about the Downs?? I chose not to research anything about Downs for two reasons: 1. I already had a decent working knowledge of Downs; and 2. We have the upper hand, I don’t need to worry about it unless it’s here.
Tuesday morning came around (remember, I was supposed to get results on Wednesday) and I got the call. “Unfortunately, your baby is testing positive for Down syndrome. Can you come in today to meet with our genetic counselor?” It took everything in me to say, “ok”. I hit the floor holding my neck in one hand, phone in the other, making phone calls I had dreaded. Yes, Gabriel has Downs. Point blank, I was hysterical for about an hour. It took me that amount of time to move from denial and sheer panic to praying for Gabriel and thanking God that he was still alive. I’ll have to write about those prayers in a different entry.
The emotions and thoughts from that phone call and the following few days seems distant now. Maybe I’m lying to myself and maybe I’m filling this entry with empty words. That was an empty sentence. They do seem distant, but I’m feeling selfish and I just don’t want to cycle through the heaviness of the grief I had to get beyond. I’ll have to come back to those thoughts in a different entry. For now, I’m trying to look forward.