A number of families enter into tube feeding without having a choice, when there is an obvious issue that prevents feeding – aspiration of all thicknesses, structural issues, or genetic, neurological, pulmonary, or cardiac conditions – to name a few broad categories.
But, many find themselves faced with a true decision. They have a child who is eating and drinking orally, but not enough to gain weight. Often that child receives the Failure to Thrive (FTT) label. There isn’t a standard definition of what constitutes FTT. However, it is commonly defined by a failure to gain enough weight to support expected growth. Doctors may talk about “falling off the curve,” referring to the percentiles on growth charts and where they expect a child to be. A child may not gain or grow for months at a time during periods of more rapid childhood development, or make too little progress. Attempts are often made to make food more caloric, and to encourage more eating or drinking. But, a child may be spitting up or vomiting, experiencing diarrhea, or he or she may increasingly refuse food.
By the time you discuss tube feeding, many things have probably already been tried. Tube feeding is often the last resort, and very rarely a first-line treatment option. Check out these Myths and Facts about tube feeding.
Malnutrition and dehydration aren’t to be taken lightly, particularly in young children. Malnutrition can have long-term effects on growth and development, especially brain development in the first few years of life. Moreover, those who are undernourished are more susceptible to illness and will take longer to recover. The primary goal of your medical professional may be to get your child adequately nourished and hydrated, with an eventual focus on weight gain.
If there is a path for your child to catch up on his own by safely eating and drinking, then you do not need to begin tube feeding. But, if your child hasn’t been able to catch up and isn’t able to maintain growth and development, your decision is made.
What we hear most often from parents who were reluctant about tube feeding – some even putting off the decision– is that they wish they had done it sooner. The benefits of seeing your child gain weight, grow, and thrive again outweigh any inconvenience posed by a feeding tube.
I wish that I had realized that having a tube placed did not make me a bad mom. We love our children dearly, but sometimes accepting that no matter what you try, your child needs a doctor’s help can be very difficult. Those first few weeks after surgery were hard, but seeing her start to thrive, and laugh, I’ve realized that I made the best decision I could. Trust your instincts, keep your faith and remember that you’re giving your child every tool possible to help them. A tube is no different. It’s just another tool to help them eat, and it’s my daughter’s path to a happier and healthier life.
When your child is unable to eat, swallow or get enough nutrition orally, the tube takes away so much worry — you know that they are getting the nutrition, hydration, and medication that they need to grow and stay healthy. The thing I wish I would’ve known is that tube feeding sounds a lot more scary than it actually is — once you learn the equipment and the schedule, it’s really just an alternative way to feed your kid.
At first you’re going to feel frazzled and overwhelmed but just keep your head up. A feeding tube is an adjustment but it’s also the gift of life. 🙂
My only regret is my hesitation. Seeing Ava finally THRIVE, both physically and developmentally, after the tube was placed was amazing. I fought tooth and nail for as long as I could, but looking back, we have probably made no better decision in Ava’s care than placing her first G-tube.