He really did pretty well at first. He was on a ventilator but on modest settings and not much oxygen. The afternoon of the admission I sat down with the parents and had a long chat with them about premature babies of this gestation. I told them, among other things, of the typical problems these kids have, the extended NICU stay, the risk of serious complications like intracranial hemorrhage (bleeding into the brain), the survival rates for kids like this - about 55% to 75% - and the percentage of survivors who have impairments - about one-quarter have major impairments, one-quarter moderate impairments, and about one-half are normal, although there is a high incidence of problems like learning disabilities, attention deficit disorder, and borderline intelligence in the normal group.
There was understandably concern in the parents' eyes after our talk, but hope too. I told them their baby was doing well right now, but he still had a long way to go.
About 24 hours later the baby was dead. The morning after I talked to the parents, he suddenly desaturated (the oxygen level in his blood dropped), and none of our interventions - ventilator changes, oscillatory ventilation, and so on - could get his oxygen level back up. An ultrasound of the head showed a massive intracranial hemorrhage (IVH). My partner and I discussed it, and after discussion with the parents he removed the baby from life support, and the baby died.
A variety of anatomic and physiologic features of very premature babies put them at risk for IVH. Fortunately, its incidence has decreased in the last 25 years, and most babies who have an IVH usually have a small one, but we still see awful ones like this from time to time. It's very frustrating, because they can be unpredictable. A kid you think might get one doesn't, and vice versa. This baby was cruising along nicely; he didn't need meds to keep his blood pressure up, had no fluid boluses, and was about as stable as a 24 to 25 weeker could be. Why did he have the bleed when other, sicker premies don't?
I couldn't help but think of the bevy of emotions this mother must have experienced in the last few days: The worry of preterm birth and losing the baby; the joy of the baby being older than thought and potentially viable; the sobering news of the possible outcomes; the hope caused by his initially good condition; and finally, the devastation of the severe hemorrhage and the sorrow of holding her baby as he died. I often think that the emotional journey of a NICU parent is like a roller coaster ride, with many ups and downs, but this mother's was more like a bungee jump. You don't recovery quickly from something like this.