Every morning, pretty much like clockwork, Joaquin wakes at 5 am and wants to be turned over and repositioned in bed. I can usually just stumble in and help him, and then stumble back to bed and promptly fall asleep. But this morning I can’t stop thinking about a disturbing Doctor’s appointment we had recently.
Overall, I’ve had some great experiences at Children’s Hospital Oakland. I mean, let’s face it, I’m never there because I want to be, but at least when we have to go we get good care, this is especially true in the ER or during stays when we are admitted.
But specialists are a whole other ball game. I’m not always sure what makes them tick, it seems to be more of a love for the subject then love of the subjects if you know what I mean. The Gastro Intestinal (GI) department is one that I just don’t seem to see eye to eye with, and yesterday’s appointment has me feeling so many conflicted ways; angry, ashamed, worried and distrustful.
I have a kid who is never going to fit nicely on any standardized chart, it’s true for his physical skills, his cognitive abilities and his weight. These are things that I’ve worked to accept and now even enjoy about him. Joaquin is little. At 6 years old he is 39 inches tall and 30 pounds. He’s a bean pole. But he eats 3 huge meals a day, poops like clockwork and has beautiful rosy skin. In a year where my daughter started daycare and we have all been swapping illness’ back and forth between the family members, Joaquin has stayed relatively healthy and happy. We only went to the ER once this year. These are big improvements over years past. So why then, after spending 30 minutes with the dietician and Nurse Practitioner during a routine GI appointment talking about how good he looks and happy he seems, did the tone suddenly change when that stupid growth chart was brought out? Suddenly the words “starvation” and “malnourished” came into the conversation.
Because my son is no longer on a standard growth chart, I was advised that I should give him another 350 calories a day of milk via his g-tube. But I have to question why? He is growing, and he is healthy. A typical breakfast for him is 2 eggs, half an avocado and a handful of spinach- every morning! His nurse and aide all comment on the huge amounts of food he eats. He eats much, much, more then his sister who already outweighs him. So, am I just being asked to do this to meet the need of the MD to check a box on some chart that he is growing appropriately?
I stated that I would consider giving him milk but explained that in general the bigger he gets the harder care gets for him. This is a real concern for parents of special needs kids, one that drives some families to extreme medical interventions in order to ensure that they will be able to care for their kids at home, rather then have to have them placed outside the home for full-time care when they get bigger. You can read about it here:
While I have no intention of purposefully restricting Joaquin’s calories, the fact that he is small makes our lives easier, so is it necessary to increase his calories beyond a typical amount just to make him fit on a chart?
I am a hospice nurse, and there are many stunningly unattractive words that can be used to describe the dying process. And guess what? I don’t use them! Why when I they misrepresent what is happening? Starving is one of those words. I suppose I could freak families out when their loved ones stop eating by talking about starvation- but that would be misleading, as its a biological process the body uses to shut down, it plays an important role in a natural death.
Why then were the words starvation and malnutrition tossed around in a conversation about my healthy, growing, atypical child in such an aggressive way? As in “well, you can starve him if you want to”, and “according to his growth chart, he is malnourished”. As a medical professional who advocates for patients all the time, I felt like I could take on a doctor whose opinion I didn’t agree with. And as a mother who thinks endlessly about what quality of life means for my kid and family, I already had an opinion formed regarding his diet. But what about all those families out there who don’t have an opinion already formed? Who don’t speak medical jargon and feel they can go up against a medical professional? Its those families I worry for.
This is not just a problem with yesterday’s appointment, it’s the problem with modern medicine in general; we have programed health care professionals to care about outcomes, not quality of life, and so it’s uncomfortable for professionals to think outside of measuring tools.
Here is an example: Joaquin’s g-tube was placed when he was two, and we were instructed not to feed him orally anymore as he was failing his swallow evaluation. This meant that minute amounts of food were ending up in his lungs each time he ate. Over time this causes scarring and decreased function of the lungs, increasing the likelihood of pneumonia and shortening one’s lifespan. Instructing families not to feed kids who don’t pass the swallow eval is an example of the medical model. But Nathan and I and our wonderful GP at Kiwi Pediatrics talked for a long time about what quality of life looked life for Joaquin and our family. With Joaquin’s mobility restrictions and limited engagement with the outside world due to his visual impairment, seizures and intellectual challenges, eating was one of the things that brought him the most joy. So with her support we decided that we would continue to feed him by mouth, and we haven’t regretted that decision for one moment. This is an example of the social model; focusing on quality vs quantity.
I left the appointment yesterday feeling rage at the audacity of the doctor to use such words, but also shame, that maybe I’m not taking as good of care of my son as i thought, could it be possible that I’m starving my child?
I recently read a statistic that only one in ten professionals believes that special needs kids have meaning full lives. This is extremely discouraging as I have to interact with a great many health professionals with Joaquin. It also begs the question, how can we shift the conversation to one that focuses on quality of life, if the majority of professionals don’t even believe that our kids are capable of having one?
It’s also depressing because one of the things that I have to believe in order to survive as a parent, is that other people are capable of loving and taking excellent care of my children. With my daughter it’s a given, with my son a leap of faith. But time and time again our amazing group of friends, family, and professionals have helped to reinforce the idea that my son’s life is not only one worth living, but one worth celebrating. A therapist once insinuated that I had a veil over my eyes when it came to my son- in other words that I didn’t see him as he was in “reality”. I took a lot of offense to that, my reality is perfectly intact thank you. But, I do have moments sometimes where I feel like I see things through other’s eyes- and I don’t like what I see at all. This doctor’s appointment was like that, it made me see my son as someone who wasn’t thriving, me as a mother who didn’t take good care of him, and the doctor as an apathetic overseer ready to pass down judgments. Despite my strong opinions about Joaquin’s diet, my experience as an advocate, and my dislike for the doctor, in the end I did start giving him milk, but I’m doing it more out of fear, then hope.
please don't cue the sad music 