At 22 months of age, Andrew weighed approximately nineteen pounds when his g-tube was surgically placed. A few weeks after g-tube placement he was down to eighteen pounds and looking and acting like death. At 23 months, despite reservations from our doctors and in lieu of the mediocre surgery options presented to us, I started him on the blenderized diet and it was the best possible thing to ever happen to Andrew’s GI system as he quickly stabilized and started to enjoy life. At 27 months, he now weighs twenty pounds; still below where he is apparently supposed to be. But we must remember that before the diet, Andrew’s life was one of pain, suffering, starvation, and question marks about how much longer he could live like this. Without the diet, he would not be enjoying his life the way he has been these past few months. His health is now predictable and stable. Things have been quiet. He is alert and smiles and laughs. I think he is doing fabulously.
After not having visited GI Doctor and Dietician in several months, I was looking forward to seeing them and singing accolades about the diet and how wonderfully he was still doing. I was sure they would think so too.
But they were not. The first thing GI Doctor said to me as she walked into the exam room–after being briefed by Dietician after a conversation with me–was: “Andrew is doing EH. He should be doing A LOT better.” Huh? She is not pleased with his weight gain. He should have gained more weight by now. Maybe I can try more olive oil, more Duocal, more something with his diet, but at his age and height, he should weigh more. He should be doing a lot better than this.
I told her that while he doesn’ t weigh as much as she’d like, his life and health are SO MUCH BETTER THAN IT USED TO BE. He sleeps! He stools! His reflux is controlled! He stopped retching all day and night! He smiles! He laughs! Things are so stable! Our day-to-day family life is finally normal and enjoyable!
“Yes, but he really needs to gain more weight.”
I asked her why weight was so, so, so important. Why this fixation on his weight? His twin sister, Eleanor, is the same height and only weighs two pounds more (she has always been solidly in the 2-3 percentile of growth) and nobody is concerned about her. She didn’t really have much to say although she did acknowledge (I think because she probably sensed my annoyance) that, yes, he is stable and doing better than he used to. But, again, he needed to gain more weight. I told her okay. She said she’d see us again in a few months. I said okay.
We are not going back.
I am wary of a doctor so fixated on weight as the barometer of overall gastrointestinal well-being that they are unable to see and genuinely acknowledge actual progress. I am wary of doctors who use charts and figures meant for typically developing children and applies them, without question, to a severely disabled child who does not fit neatly into any medical text book or chart.
What if another family in our shoes did listen to their doctor, decided that their child must not be doing so well after all, and their gastrointestinal focus became weight-centric?
Andrew is blessed to have fiercely knowledgeable parents (including a father who happens to be an adult neurologist) to advocate for him in the complex medical world. However, I feel weariness about how the majority of major medical decisions made to his benefit have been because my husband and I were the ones who took the time to think out a solution, come up with a plan, and then convince our typically reluctant doctors to allow it to happen.
Where does that leave the families of severely disabled children who do not have the savviness to best navigate the system for their child’s benefit? It’s depressing to think about.
On a happier note, here are some non-depressing pictures of our handsome little guy: