For many families, weekly (sometimes daily) doctor and therapy appointments are the norm rather than the exception. They strive to make everything fit into the schedule, because doing so keeps their child “well”- or at least not sick- and hopefully making medical or developmental gains due to professional, sometimes intensive intervention. This may be a temporary scenario, or not.
For parents of chronically ill or medically fragile children, every day begins with a status check: Is he running a fever? Is she going to hold down her feeds today? Did I give her all of her meds on time? Why is he doing X? Then on to the scheduling and phone calls- to the doctor’s office to sign a request for records to be sent to the out-of-state specialist, to the insurance company to fight yet another battle about payment for the child’s numerous procedures and office visits.
For the parents who live this reality, it can be mind-numbing and terrifying all at once. Having a child who is well is the exception rather than the rule. Being truly well, however, is not the same as not being sick. For many kids, they have never been truly “healthy”, as the WHO states: “Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.”
What about these situations in otherwise “healthy” children?
- the baby who screams every time she sees a bottle, but takes a small amount when it is forced into her mouth
- the toddler who throws up at least once a day after being fed
- the preschooler who exists on Pediasure because he doesn’t know how to eat real food
- the tween who cannot attend sleepovers, birthday parties, or camp because of her restricted diet
Are these children “healthy” per the definition above? There have been many situations where the medical community has looked at these very same children and stated that they are perfectly healthy and that above all else, weight and growth close to the 50th percentile are the critical factors. The thinking seems to be that if they are gaining weight and there are no medical reasons they can find for the poor feeding, then the quality of the feedings or mealtimes doesn’t matter. Cuddles or eye contact with the bottle or tube feeding aren’t discussed, and mealtimes that feel like “hostage negotiations” or “science experiments” rather than nurturing your child are seen as a means to an end. Tears and tantrums at the table are portrayed as battles to win or behaviors to extinguish. “Just get the calories in!” is what many parents have heard.
It’s about more than just calories.
We find this line of thinking hard to swallow. When any of the above is occurring, the child is not experiencing complete well-being, and by association, neither is the parent. This post was inspired after a recent conversation with a friend who was going through a very tough time with her daughter medically (consider over 40 days in the PICU), and we talked about how the medical professionals pushed them right from the start before there was any indication of medical or nutritional necessity to feed her via NG tube rather than trusting her to begin eating again when her body was ready. With extremely traumatic experiences in her past surrounding the NG tube, this was the mother’s worst nightmare. At first the medical team seemed unwilling or unable to consider all the implications of these invasive, yet sometimes necessary procedures.
Remarkably, because the mom was so steadfast and logical in her discussions with the doctors and shared their past history of trauma and then healing around feeding, she won the battle over whether to place a tube in her daughter’s nose. She instinctively knew this procedure would be beyond traumatic for her in an already horrible situation. Her little girl held steady medically with IV hydration and TPN support (a form of feeding in which all nutritional needs are met with a solution which is infused into the veins), and began eating and drinking small amounts by mouth when she was feeling up to it. She was monitored closely for signs of malnutrition or worsening status, which thankfully never occurred. Mom was realistic and reasonable and willing to use an NG tube, but only if it was absolutely necessary. Her goal was to always focus on maximizing her daughter’s comfort and minimizing any pain and trauma.
And what happened?
She began eating as soon as she was medically ready. This child had the benefit of a trusting relationship with food and her body prior to being hospitalized (after previously having a g-tube), so she could tune in to those signals and respond appropriately. Not all children have been allowed to do this.
We are fully supportive of the use of g-tubes when necessary for long-term nutritional support: tube feeding saves lives. We feel that NG tubes, which were meant for very short term (ideally no more than two weeks) nutritional support, are often erroneously used for longer than is prudent for the child’s overall comfort and future relationship with food. Tube feedings can be incorporated into nurturing mealtimes, but the whole child and family must be considered as to how and when to use this life-saving medical intervention.
See the child behind the spoon.
When we view feeding and eating through a medical lens, essentially one reduced merely to calories, it can be very difficult to see the actual person behind the spoon. Every child has their own set of unique preferences, abilities, and experiences, and we need to value and honor those. Overriding a child’s need for bodily autonomy does not help them learn to eat in the long-run, even if it may serve the medical goals in the short-term. Viewing feeding as a medical intervention only serves to further distance us from the actual child who is doing their best to learn to eat.
And we need to see that child in all their uniqueness in order to actually help them accomplish that goal.
For more, check out our book, Helping Your Child with Extreme Picky Eating
Looking for tube-feeding information or support? Our resources page contains excellent links and there are many Facebook groups that focus on tube-feeding.