Thursday, August 16, 2012

The Cobra in the Box

By Mark Brislin

After Owen was born and while he was in the NICU, I would wonder what happened to the Cobra. Did he return to his natural habitat, did he disintegrate into the air, or was he waiting in the corner to strike again? Did he go into someone else’s box, or was the cobra actually a manifestation of something bigger? Was he there to protect, or to attack, or to remind us that no matter how happy you got, the cobra was always there?
One night shortly after we learned of the CDH diagnosis, Maria and I were sitting in bed. I was frantically reading medical journals and on CDH support sites searching for information. Why did this happen? What did I do to cause this? Why do 50% of the kids with CDH die? What is the survival rate of a child with a lung to head ratio of 1 at this point in the pregnancy? Did that genetic counselor really tell us it would be best to abort this pregnancy, the one that we have waited 3 years for? And always the question, why?
Maria looked over at me after watching another show on Animal Planet about snakes.  She had her hand on her 20 week pregnant stomach and a look on her face that I can’t really describe. She talked about the CDH diagnosis and how it was like walking around with a cobra in a box.

Think about that for a second. A cobra is one of the deadliest snakes in the world. It inflicts venom and kills thousands of people a year.  But it doesn’t attack unprovoked. And here was my pregnant wife, carrying a child with an unknown life expectancy determining that it was analogous to walking around with a cobra in a box. Well, let’s just say you can’t google that.
Our CDH diagnosis came at week 20, and Owen was born around week 40. Check my math but that’s 20 weeks, or 3360 hours, or 201,600 minutes to think about whether or not your child will be born alive.
As the pregnancy moved forward, we had to think about normal things like- do we have a shower? In our case, we did have a shower, two actually. But when we walked around the baby store clicking items that we never knew if we would use, a day that should have been one of the happiest in our lives was marred with a cloud. Because sitting in our shopping cart, next to the little Red Sox outfit that I had to have was the Cobra in the box.
When we painted the nursery, and filled it with furniture, we looked inside the crib and instead of imagining a child sleeping peacefully, there sat the box.
When I looked into the back yard, instead of dreaming of teaching my son to play baseball, I saw that damn box mocking me and telling me that you cannot be happy, you cannot think of the future.

In retrospect, things worked out for us. Our son is almost 12 months old, and despite some slight internal issues he is thriving. But there are others out there that aren’t so lucky, the snake came out of the box and inflicted its venom and the parents have to live with the pain of that bite for the rest of their lives.
My point here as in all of my posts is to help people understand that the impact of CDH,  or any NICU stay, stretches far beyond the medical impact. The diagnosis is scary; the experience - despite our positive outcome - changed our lives forever.
It changed the way we think, the way we live and the way we deal with other situations.  Just because our child was improving, didn't mean it was over. You're always thankful that your situation turned out well, but the experience haunts you and there are some days when despite our best efforts  we still hear a tiny hiss.

1 comment:

  1. Great post, Mark, and so true. We didn't have as much time as you did to worry about our CDH-er. We found out at 37 weeks. But those 3 weeks were probably the worst and hardest of our lives. Our son was obviously not a preemie either...but he was still in the NICU for about a month.

    Thanks for sharing your story!