This is a photo of Charlie and Kendall taken just after Charlie’s sixth surgery at Cedars, the fourth surgery he had on his brain. It was a little over two years ago and, as always, we were given all sorts of dire prognoses about what we might be facing with Charlie as a result of the brain injuries he suffered just after his extremely premature birth. When he was born at 24 weeks, he weighed 1 pound and had a Grade 4 brain bleed (intraventricular hemorrhage) on his left side, which is the worst one you can get, and a Grade 3 on his right side. I haven’t looked at any online boards for parents of premature children in a long time but I just glanced at one and this is the first thing I saw:
My son was born at 24 weeks and he has a grade 4 brain bleed on the left side. We have been given very grim news and pretty much told he will have cerebral palsy and mental retardation. He may not walk and so many other bad things. I asked the doctor if my son could possibly have mild palsy and he said he feels there is an 80 percent chance it will be moderate to severe. Why, why, why is what I keep asking myself. Why my boy, why any little baby? This is horrible and I am so scared and wish the doctors would give us some hope, but is there any hope?
I could’ve written that, word for word, except Charlie’s condition was a bit worse because he had two brain bleeds and other problems. I get why doctors feel the need to provide parents with worst-case scenarios in situations like this. They want the parents to have all the facts, they want to make sure they’re not in denial about the challenges ahead, and yes, they want to cover their butts in case things get really bad.
I have nothing but admiration for most of Charlie’s doctors and I’ve never wanted to kill the messenger (well, almost never). But I do wonder if stressing worst-case scenarios is really the most effective plan. My mother-in-law was telling me last night about someone she met who was getting a PhD on the physical aspects of “hope.” Apparently there are a lot of new studies that show how patients do much better when they are given reason to believe that there IS hope in their situation, no matter how dire it may seem in the moment. That makes so much sense to me—it’s not about lying to patients or families, I don’t think anyone would ever want that, it’s about the medical staff acknowledging that they don’t know everything, that every person is unique, and that the power of hope, prayer, and positive thought should never be dismissed.
To be fair, our doctors always combined worst-case scenario meetings with a standard reassurance that the brain is “plastic,” meaning that even though the parts of Charlie’s brain that control certain functions were damaged, he could learn to use different parts of his brain to do the same things. It’s an amazing organ and, of course, as much as these brilliant doctors know about it, I think they’d be the first to admit that medical science has only scratched the surface.
There were many dark days back then, we were told so many scary things about Charlie’s condition and his future. One time I accidentally overheard a doctor who'd been present at one of Charlie's brain surgeries say to another doctor, “It looked like a bomb went off in there!” But I also remember the day when we were told by a doctor that Charlie had gone from having less than a 50 percent chance of survival to just over 50 percent. To us, that seemed like the best news we’d ever heard, I remember practically dancing out of the NICU that day. We had no idea what we’d be facing in the months and years to come, but we finally found the comfort of surrender: it didn’t matter. Whatever happened, we’d deal with it. We’d already lost Charlie’s brother (who didn’t have any brain bleeds) and we’d seen Charlie fight through five months in the NICU that included many terrifying moments. That kid had a will to live.
When Charlie was in the NICU, I spent every free moment Googling “24 weeks, Grade 4 brain bleed,” scanning every result for hopeful outcomes, especially among older kids. That’s part of the reason why I post all these videos of Charlie on here. Okay, I’d probably do it anyway because I’m a parent and think my kids are amazing, but I want to give hope to people who are dealing with that terror right now. No matter how old Charlie gets, those NICUs will always be full of sick babies and terrified families. It makes me feel so great every time I hear from someone who has found some comfort by reading about Charlie on this blog.
For all parents, a child’s development is so gradual that you suddenly find yourself saying, “Huh? When did he start doing that?” I remember when there was worry that Charlie would never talk. Then I remember the concern that he only spoke in one or two word sentences. The other day I actually started counting the number of words in his sentences because I couldn’t believe he was talking so much. There was a 14-word sentence in there: “I want to throw this away in the white trash can in the kitchen.” (Charlie is all about trash, recycling, dumpsters, and garbage trucks!)
Last week he had an evaluation by an occupational therapist who said that while he still has some physical issues that can be addressed, she was thrilled to see how well he was doing cognitively. Charlie has a way better memory than I ever had. He can hear a song once or twice and repeat it in its entirety. The same goes for books. Below is a video I just made of Charlie reciting a nursery rhyme on his own. I had no idea he knew it until he just started blurting it out:
Notice how he started clapping and then remembered that he hadn’t finished the verse and went on. Here’s another recent video that I already posted on Facebook of Charlie singing one of the most ridiculous songs from my childhood. Again, I had no idea that he knew it so well (I guess I’d been singing it around the house):
I’ll refrain from my usual apologies for posting such videos and instead address the terrified Googling parents of premature babies who’ve somehow landed here. Please know that there IS plenty of hope—give it time and your babies, too, will be walking and running and singing wildly inappropriate songs!