After the family meeting on Wednesday we found out that our little boy was much more injured than we could have imagined. His little light had already gone out.
The doctors at the meeting (two neonatologists, the neurologist and the nefrologist) and Neonatal ICU's social worker were all in consensus about his prognosis. They had also discussed Lachlan with many of the the other neonatologists working at the hospital, who had also agreed. The MRI showed Lachlan's brain damage to be comprehensive and extremely severe. It affected all parts of his brain, there was literally nothing undamaged. It was so pervasive and severe that there was no chance or hope of the brain successfully rewiring or recovering in any way. And the damage would get worse at least over the immediate future.
His motor functions would be severely impaired by large amounts of bleeding and a clot in his ventricles. This would bring about severe cerebral palsy: he would not be able to move. He would not be able to swallow. The clot would get larger, causing further damage, and would not go away by itself due to its size. It would cause him pain due to swelling. To drain fluid buildup from his ventricle, he would need multiple brain surgeries as he grew. These surgeries would be necessary to reduce his pain, and also to give him a chance for survival.
Lachlan's cortex had been devastated and experienced massive bleeding. Like his motor control, this meant that his intellectual facilities were severely impacted for life. He wouldn't develop learning abilities. It wasn't that he would develop slowly. He wouldn't ever be able to recognize us, smile, or reason. Due to the location of one massive amount of bleeding, it was also unlikely that he'd ever be able to see. The responses the neurologist saw in his eyes were likely reflexive from the brain stem and not from his visual processing center.
The doctors were in consensus that Lachlan would have a "very very poor outcome" and that he would have "no quality of life", due to the extent of his brain damage. After the ultrasound but before the meeting we thought that Lachlan would be quite impaired, but he could enjoy a sunny day, a visit to the park, or attention from our pet cat. We had come to terms with such an outlook for Lachlan. The news from the MRI was devastating.
They also said that Lachlan would lead a life of suffering.
Lachlan stopped urinated by himself which worried the doctors. He had to be catheterized again, and the nefrologist said that as he aged he would have to be catheterized frequently to empty his bladder. Otherwise he would develop painful and life threatening bladder infections (even if his bladder was emptied late just once).
His cerebral palsy would cause painful stiffness, which could be mitigated with drugs. However these have their own side-effects and are not perfect. More seriously, Lachlan would suffer from recurrent pneumonia. Infections could take hold in a very very short period of time. This reduced his life expectancy and also would bring great suffering to him.
While his kidneys appeared to be improving, they would remain severely impaired. Subsequent infections (e.g. pneumonia/bladder) would deliver further punishment. Before the family meeting, we thought that if they did shutdown, there could be a chance for transplant because his other organs seemed to be slowly coming back. The nefrologist said that with his extensive brain damage he would never be considered for transplant, so a life-time of dialysis could be waiting for him. She said that it "would be cruel" to him, and that they would recommend against dialysis.
Lachlan would develop severe epilepsy. Seizures would continue into adulthood but grow painful for him to bear.
Having any one of these conditions alone would not be issue enough to form a family meeting. But taken together these conditions meant that Lachlan would suffer with certainty.
At the end of the meeting the doctors said that we had to make a choice about whether to maintain Lachlan's life support. We could cease support to spare our son a painful life with quantity but without quality. Or we could continue supporting Lachlan until technology was not able to maintain him any longer. The doctors were clear about the prognosis described above as being almost certain. They said that his damage meant that short of a miracle, his life would unfold as they had discussed. Also, the doctors' discussion was objective and focussed only on Lachlan's interests. They did not consider our role as guardians and care givers.
This is the decision that no parent should have to make. It is our responsibility as parents to make it for our son. Our great love for Lachlan would lead us to making the decision as best as we could, with what we think he would want, potentially bearing any pain for him. Although they repeatedly stated that the hospital supports all decisions, they made it clear that their stance was unanimously for preventing a life of suffering without any quality of life.