Children with Down syndrome are at a significantly higher risk of cardiac related birth defects. There were no obvious signs that there was anything wrong with her heart, but a pediatric cardiologist would have to evaluate her.
We were told that she would have an echocardiogram that evening and be scheduled for surgery to repair her esophagus the following day.
Things changed. The doctor informed us that they needed to do the surgery today, before consulting with the cardiologist and without knowing if there were any structural defects with her heart. With each breath, her abdomen was distending. She likely wouldn't survive if they waited to do the surgery the next day.
I understood there was no choice. Stranded in the desert and dying of dehydration, one cannot be concerned with the quality of the only water you find. There are priorities and there are immediate needs. But I needed to know what the risks were by doing the surgery before knowing anything conclusive about her heart. The only assurance I got from the neonatologist was that she was not cyanotic.
We met with the surgeon and he explained the procedure to us. He reassured us that no one in the area has performed more of these types of surgeries than he. He told us what he would do and that as a result of the surgery there would be a 100% chance that she'd have reflux. Reflux I could manage. But a cardiac defect? I was not at all worried about the surgery. I prayed her heart was strong. Abby had taken mine the minute she came into this world and now I was frightened for hers.
Slowly, family started to arrive. We hugged. We cried. We had questions. We wanted answers. There were none. We relived each moment over and over again and tortured ourselves with searching for reasons where none existed. We promised support for each other. None of us were alone, but each of us felt as though we were.
A nurse came into the room and told us that the surgery was over and the doctor would meet with us. We hurried into the lounge and waited for the surgeon. Finally, he came in. He told us that the surgery could not have gone any better. At that moment, I realized that I was in fact concerned about the surgery. Of course I was. How could I not be?
The repair would be evaluated in a day or two and if it was sound, we could start feeding her. We made plans for her to be at the hospital a few more days. Maybe a week. But no more than that.
And so we waited. We waited for the cardiologist. Family left and still we waited. We stayed with her in the NICU. I looked at the other children. The other families. What were their stories?
Each of them had one.
No one wanted one.
To be continued.