The Doctor Will See You Now

As I explained yesterday, while Robbie was in the NICU, we didn't have a lot of contact with the doctor who was over the babies there. Until one day when we did...

It was a Thursday, 6 days after Robbie was born. By then I had been home from the hospital for 2 days, still recovering from a C-section, and Chris and I were going to the hospital every day to see Robbie. We were still learning the ropes--what all the machines meant, what questions we should ask at our visits, etc. By now a few things were going well--Robbie was no longer on a ventilator for breathing (although he still required oxygen through a nasal canula). He was able to be fed milk through an NG-tube that was fed through his nose down to his stomach. At this point, this was very good progress, and we were feeling relieved that he was surviving.

When we arrived to see Robbie that day and participate in cares--changing his diaper, etc.--the nurse mentioned that the doctor needed to see us before we left. We finished up what we were doing with Robbie, and had to wait around a bit until the doctor was available. I remember feeling a bit anxious not only about what he needed to tell us, but about the time, as someone was watching our older boys, and we were supposed to be back by a certain time to pick them up. When the doctor was ready, we walked to a small room with the doctor, a nurse practitioner, and a social worker. The room looked like a small conference room and had a white board on the wall.

The doctor began drawing diagrams, and explaining some details about the brain development of a fetus, and how premature birth puts babies at a high risk for brain bleeds. His explanation was detailed and made sense. He talked about an area of the brain called the germinal matrix--an area from which new cells migrate out during brain development. During early brain development this area is very active, and the way the doctor explained it, the cells and vessels are tightly packed--protected even. Toward later brain development, this area will no longer need to exist, so it is not as tightly packed, and is very fragile for a period of weeks--it is during this window of time that there is high risk of bleeding in this area of the brain. And it was during this window of time that Robbie was born. (Robbie was born at 29 weeks gestation. 40 weeks is full term.)

The doctor went on to explain that a brain bleed, or IVH (intraventricular hemorrhage) is classified into one of 4 Grades, according to severity:

• Grade I - bleeding occurs just in the germinal matrix.
• Grade II - bleeding also occurs inside the ventricles.
• Grade III - ventricles are enlarged by the blood.
• Grade IV - there is bleeding into the brain tissues around the ventricles.

We were told that with each grade, their was a percentage chance of the baby having long term effects from the bleed. I don't know the exact numbers, but it was something like a Grade 1 bleed had a 25% chance of long term effects, while a Grade IV bleed had a 75% chance. In any case, we were told, the effects would not be known right away, and could range from lack of coordination to learning difficulties, to mental/cognitive deficiencies, to Cerebral Palsy (a term which means different things to different people, including us at that time).

Then the doctor told us that Robbie's brain scan (a standard-for-preemies test performed earlier that day or the day before) had showed that Robbie had had a Grade 4 IVH on the left side of his brain.

Then we sat there. Stunned. Then we asked a few questions. Then we all left the room.

Someone probably should have suggested that Chris and I stay in that room for a few minutes. We walked out, down a long hallway toward the hospital exit; as the tears started to flow, we realized we had nowhere to go. So we sat on a bench in front of the hospital. Then there was nothing to do but regain our composure, get in the car, drive home, and pick up our boys. And wonder...

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Streaking for Pediatric Stroke, Day 14