Monday, February 27, 2006

NICU Nightmares

Over at Navy Blue Elephant Trunks, Blue is blogging through the nightmare of delivering a baby at 24 weeks.

She says, in part:

We also learned to talk to a nurse after talking to the doctor since he apparently likes to give the worst case scenario. The nurses will tell us the same information but it doesn't come across as doom and gloom from them. They are much more practical and reassuring. (My personal opinion is that the Neonatal Intensive Care Unit is NOT a place to be spouting off worst case scenarios. We have enough on our minds without unnecessary worry.)

Oy, this brings back bad memories.

When D. was brought to the NICU -- and I haven't spoken here about his birth, which is an important part of his story, but for now we'll just fast forward an hour or two to the part where Mr. WG and I sat in the NICU waiting area -- Dr. Nice Guy was on call. We caught glimpses of him working on D., and after some time, he came over to us and sat down.

"You baby is sick," he said, and I remember how the world started spinning and I could hear a rushing in my ears. "We had to intubate, and we started him on antibiotics," he said.

"Can we see him?" I asked.

"Of course," said Dr. Nice Guy, and he walked us over to our son, who was splayed out on a small, open bassinet with the sides down for easier access. "We had to give him some paralyzing medicine so that he wouldn't fight the tube," said Dr. Nice Guy. He explained that he thought our baby had an infection that was making it difficult for him to breathe. That he had received the first dose of a 3-day course of antibiotics.

"So we have to stay here for at least 3 days?" I asked. Bear in mind, when we arrived at the hospital, my husband and I thought our midwife was being overprotective. We thought we would be taking the baby in for a quick check and going home. We thought *maybe* we'd have to stay overnight for observation. At that point, we still thought D. was a 37.5-weeker -- a just-full-term baby. In the next few minutes, all of those thoughts came crashing down around us.

"This is a sick baby," I heard again and again in the NICU. "You should count on being here at least a week." It wound up being 11 days. Eleven. Eleven days that dragged on endlessly, eleven days of despair. Dr. Nice Guy pointed out different signs that D. was more consistent with a 36-weeker -- a preemie. Hypotonia, difficulty breathing, COVERED in lanugo, jaundiced.... But through that first night, Dr. Nice Guy was calm and reassuring, and we felt like our son was in good hands. And just before he went on to heal the next sick baby, he mentioned, casually, "His head is a little big, you know." Famous last words.

The next day, we met Dr. Death. His manner was abrupt. Every piece of information was presented as if we were interrupting him, keeping him from his more important tasks. Every question we asked was met with the most pessimistic response possible. And when D. had his first brain MRI, at 7 days old, Dr. Death showed his true colors.

The day of the MRI, my parents sat with me in the small waiting area, the closest they would let us be to where D. was. At the end of the hour, my father -- a retired surgeon -- motioned to my mother to walk me back up to the NICU. He hung back to do his thing. He played the doctor card and got the radiologist to read him the films on the spot. She said that what she saw was the normal brain of a slightly premature infant, and that her report would reflect that.

Two days later, that report made its way to the NICU, to D.'s chart. Dr. Death was on the floor that day. My parents had just left for a quick lunch, and I was alone by D's side. (Mr. WG spent early mornings, late afternoons, and nights at the hospital. In between, he put in appearances at work. He was amazing.) Dr. Death came over to me and said, "I have your son's MRI results, but I'm going to wait until your father comes back, because I don't want to have to go over it twice." I was so stunned I couldn't even speak, which in retrospect is probably good. My parents returned, and Dr. Death made his way to our area. He handed my father a copy of the MRI report. The report stated, in part:

Findings are consistent with a slightly immature infant brain. Followup MRI recommended in 6-8 months if infant is not meeting developmental milestones.

Dr. Death said, "Well, the MRI tells us that your son will likely not meet his milestones and have some delays. We need to repeat the MRI in 3 months." We all looked at him, speechless. He continued, "He's going to have some problems." He kept talking, but I stopped listening. Did he think we couldn't read? Did he think we were STUPID?

Later in the day, Mr. WG came and was brought up to speed. He asked Dr. Death, "What kind of problems?" And Dr. Death said: "We don't know. He might never learn to walk or talk."

That, my friends, is pretty much malpractice. Even if my son's prognosis were truly that grim, that is NOT the way to present it. And because he could not POSSIBLY know that, and because the MRI did not indicate that, to toss off such comments was grossly irresponsible.

Imagine if we had believed him, and if we had brought D. home and assumed that he would never learn to walk or talk. Imagine if we had not bothered with physical therapy. Imagine if we had simply plopped him in a bouncer and ignored him, because, what's the point?

Or, imagine a highly realistic scenario in which the already hormonally-affected post-partum mother hears this horrific prognosis and sinks into post-partum psychosis and harms herself or her children.

I get so angry when I think about our NICU experience. And so I say to Blue, be careful. Yes, you need to listen and be prepared and be knowledgeable, but you are correct when you say that the NICU is not a place for pessimism. You be your daughter's cheerleader. I told D. every day in the NICU, over and over again, how proud I was of him. When he kept his numbers good for an hour or two, when he tolerated a feed, when he peed -- everything he did, I told him he did well. I praised him constantly. And damn straight it makes a difference.


Lisa b said...

The more I read here the more comforted I feel.
Yet at the same time I am horrified these same stories keep appearing.
My Dr Death was my geneticist. It is absolutely unhealthy and, I agree, malpractice to give post-partum moms the worse case scenarios.
If we think they are going to die anyway what would keep us from doing something bad.