Ethan Part 9: Early Scars

Intial respiratory distress resolved but neurological prognosis remains guarded.

-Ethan's medical record, 8 days old

Things went slowly for a while. Each day we carried the fear that the bleeding in Ethan's brain would get worse, and he would need to have a shunt put in. Fortunately, the CAT scan and MRI he had over the next few days showed that there were no new hemorrhages. Things were stable for now.

When Ethan was 6 days old, we were finally allowed to hold him for the first time. He still had the nasal cannula, but most of the other tubes had been removed. The nurse helped us kangaroo him against our bare skin, a technique often used in the NICU. I took pictures of Jete holding Ethan on his chest. He was so tiny, he looked lost in Jete's chest hair. But he slept peacefully.

Further CAT scans the next few days showed the bleeding in his brain was starting to recede. Where it had previously been they could see signs of atrophy. The damage had begun.

The doctors explained that the damage in Ethan's brain was widespread. He had dozens of clots of all different sizes. I'm no brain expert, but I knew different areas control different things. I wanted to know what parts were damaged. The walking part? The talking part? What would he be able to do and not do? But it wasn't that simple. So many parts were damaged, they had no idea what function was destroyed. Or more importantly, what functions remained.

It was hard for us to look at this little baby - improving every day, eating well - with the realization that parts of his brain were dying. He looked like any other newborn in the NICU. Any other newborn I had seen, for that matter, minus all the tubes and wires.

But the doctors continued to be grave when they spoke to us. It seemed like they were afraid to give any glimmer of hope. We would ask questions every day.

"What will he be like? Will he be okay?"

They answered, hesitantly. "We don't know. We can't promise anything."

It was frustrating, to say the least.

My biggest fear was that he would be a "vegetable". That he would never be able to interact with us, never be aware of the world around him. I knew of a family who had to send their baby to a nursing home after birth because they couldn't take care of him. Would that happen to us? Would Ethan ever come home? But I didn't ask all those questions. I didn't want to know the answers. Besides, we knew what the doctors would say anyway.

"We don't know. We can't promise anything."

Occasionally, we would get a doctor who would offer a small bit of "good" news. If a stroke had to happen, this was the best time for it to happen. Infants brains are very pliable. Since the brain is wired to rapidly develop and change the first few years, there was a slight possibility that some of the areas could start to repair themselves. There was no telling what could be recovered.

It wasn't a miracle, but it was our last hope. We took what we could get.

The pathology results from the placenta finally came back. The clots they had seen visually were actually widespread. Forty percent of the placenta was clotted, and it was extremely small for the gestational age. That meant that in my last few weeks of pregnancy, Ethan was only getting about half of the oxygen and nutrients he needed. He had been slowly starving to death.

The clots concerned the doctors. One of us - Ethan or I - must have a clotting disorder, they told us. The neonatologists took tube after tube of blood from Ethan to test for things I had never heard of. Protein C. Protein S. Factor II Mutation. Anti-thrombin III.

Dr. F ordered the same set of blood tests for me. If I had a clotting disorder, we had to know right away. I could have a clot or a stroke. It would doom any future pregancies to the same, or a worse, fate. It was terrifying, but comforting somehow. At least we would know what had happened, and it could be treated. We would finally have some answers.

We continued our routine day after day. Mornings, I would go to the NICU by myself. Jete would work, then I would go home in the afternoon and we'd go back to the NICU together. When we couldn't go, there were always grandparents there to visit. If nothing else, we knew Ethan was loved.

The clotting tests were so rare and specialized that they had to be sent to a clinic in another state for analysis. In the meantime, we waited. Waited for the results. Waited for some answers. So far, we had nothing but questions.

NEXT: PART 10 - BLIND HOPE