The Continuing CDH Advocate

“Being an advocate” was something I had heard of, but it really didn’t mean much to me until I received our CDH diagnosis. I had mostly just heard of that phrase as it pertains to “patient advocacy” when I was going to nursing school many years earlier. I never guess that being an advocate would be a role I would take on in a new way, and become one of the many hats I now wear as a parent.

We fought hard for Adam after our CDH diagnosis, even before he was born. From the first questions about termination, prenatal testing, fetal surgery, and more, we were bombarded with thoughts that went well beyond wondering what the gender was. It was irrelevant at that point. I had the battle to fight for my unborn child, and I needed to prepare for the unknown.

Yes, we fought hard for him. We did our research, found a team we were comfortable with, relocated, and got on the front lines. We spent 90 days in the hospital fighting one battle after another and breathed giant sighs of relief as the word “discharge” became a frequently used word. I was ready to take off my armor and go home to be with my “most likely won’t survive” baby boy. We had a few battle wounds, but nothing compared to what it could’ve been.

But little did I know, my days of being a CDH advocate had just begun. This has probably been one of the single most shocking surprises along this CDH road. I didn’t anticipate it, and the stress, worry, and frustrations still leave me reeling at times. It’s been 6 years since we were introduced to those 3 letters (CDH), and I still walk into every appointment for Adam donning, my “I am his advocate” hat. I knew I would have to teach others about Adam, but I didn’t realize Adam would fall short of several “normal” child things, begging constant questions. “Normal.” Now that is a word that has taken on a new meaning, But that is another story.

You see, I had this vision of bringing Adam home and getting him caught up so quickly, no one would ever know how he started. I believed I could do this, because, after all, most said he wouldn’t live. But he did. I read the developmental stages handbook even before we left the hospital. I got him eating by mouth, lined up appointments, and read up on anything that would help him bridge the gap between “NICU baby” and “normal baby.”

I didn’t realize that I could do everything under the sun, and Adam still would fall short of those normal things he should be doing. We have spent countless hours doing all sorts of occupational/physical/speech therapy, assessments, evaluations, and more. We have advocated at each specialty appointment, in the emergency room, hospitalizations, and now with the school district, as we discuss kindergarten options. I look back, and it’s like a distant dream sometimes- so very many hours advocating.

I remember sitting in an appointment with a developmental pediatrician as we continued to search for answers for his major speech delays. We were looking for clues, anything to give us more direction. I didn’t know this provider, and I don’t even know if she was familiar with any other CDH children. I was already on guard.

I watched her examine Adam as a 3-year-old, talk to him, inspect nearly every part of him. I waited, anxious to hear what she had to say. We discussed genetics- which, up to this point, have been inconclusive with a minor abnormality, but nothing significant found. She pointed out some physical things like 2 cowlicks on the back of his head, his kyphosis, and possibly low set ears, things I had never noticed. My face flushed hot red- I could see my reflection in the mirror in our exam room. I took deep breaths. This doctor meant well, but I wanted to scream, “Don’t you know what he’s been through?! What I’ve been through?” I know she was trying to help, but I just needed to hear something along the lines of “wow, your child has truly conquered so much. You must be proud. You’ve worked hard as his advocate.” But instead, I scooped Adam up after we were done, buckled him in his car seat, and quietly cried in the parking lot. Sometimes it feels like diagnosis day is like groundhog day; all over again.

I wanted to be validated because WE HAVE worked hard. Adam has exceeded many expectations. He eats, runs, climbs, is smart enough to know when it’s bedtime, and runs the other way! He wrestles with his siblings, gets himself dressed and undressed, and likes to wash dishes with me. He notices when other kids are sad and sits down on the floor with them- concern on his face. He works so very hard at speech therapy and is making progress. He isn’t afraid to back down from a challenge and seems to choose the path (literally) less traveled to see how far he can go.

 So we will continue to travel that path with him, advocating, pushing forward, speaking up, teaching, educating. We have started to find new advocates along the way, who are ready to walk the path with us, fight with us, support us. And, of course, have our Tiny Hero community.

And guess what? Meg Ryan has two cowlicks, and I’ve always liked her. One more thing. Just for the record, the cowlicks were just another physical feature they were looking at, and don’t necessarily mean anything significant, because they look at EVERYTHING. Don’t panic.

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