I’d like to begin by clearing up some misconceptions about feeding tubes.
First of all, it’s not a tube. Not really. It’s more like a button, that opens and closes, allowing food to enter directly into the stomach.
Second of all, it’s not scary. Or even that big of a deal.
Have you ever pierced your ears? Then you know what it’s like to put a hole into your body.
A gastronomy tube (or a g-tube) really isn’t all that different. Except that it’s obviously more functional, in the most life-giving way.
Our G-Tube Story
When my daughter was 11 weeks old, a pediatric neurologist told us she had Spinal Muscular Atrophy, type 1.
SMA is the number one genetic killer of babies. It causes global muscle weakness throughout the body and makes it difficult to move, eat, and breathe. Most children do not live past their second birthday.
We were in shock. Completely devastated.
And, as if the diagnosis wasn’t bad enough, our doctors quickly informed us that she would need a feeding tube to protect her airway and keep her healthy if we wanted to seek proactive treatment.
Basically, every time I fed my daughter I was putting her life at risk. Weak muscles means a weak swallow, and aspiration pneumonia can be deadly.
I spent the next week on my knees in prayer, pleading for her life and trying to prepare for the terrifying road ahead.
At the time, a feeding tube felt like the beginning of the end. But, now I know better.
It was the beginning of living. My daughter’s g-tube is simply part of her.
Good News Tube
It’s been two years now since my daughter’s diagnosis and surgery, and I can honestly say that SMA has changed our lives for the better. It’s hard and isolating at times, but it’s also led us to seek joy and contentment in the places that really count.
In comparison to her life, the g-tube is so minor. It’s just one of the things that I have learned to accept and love. Here are just a few reasons why.
A g-tube helps her live. Notice, I didn’t say it keeps her alive. Although, that is also true.
For us, tube feeds take only a few minutes, four times a day. In between feedings, she likes to do what all children do. Play and play some more! At mealtimes, she eats what she likes and participates with our family at the table. She is able to stay healthy and well because we aren’t trying to force her to eat 100 percent of her food by mouth. This makes eating exactly what it should be. Risk free.
It helps her recover quickly from sickness. When you get sick, what is the first thing the doctor tells you to do? Drink lots of fluids! A child with a weak swallow cannot increase his or her fluid intake when sick, and most can’t even maintain the small amount normally eaten when well. With a g-tube, we never worry about my daughter’s need for fluids or her ability to swallow food. We can keep her well hydrated at all times, and this helps her recover from sickness quickly.
She doesn’t have to swallow medicine. Forcing a child to swallow yucky medicine may be one of my least favorite parental duties. With a g-tube, my daughter never has to taste the bad stuff. And middle-of-the-night Tylenol doses are a breeze when you don’t even have to wake them up.
She gets the best possible nutrition for her body. My daughter’s rare disease requires an equally rare diet, and with a g-tube, I am able to mix and blend all the perfect ingredients for her to stay healthy. Extra calcium? Amino acids? Fish oil? It all goes in. She is definitely the healthiest eater in our family.
It brings peace of mind. If you or someone you know is facing g-tube surgery, please know it’s going to be okay. More than okay — it’s going to be so much better than it is now. A g-tube means you no longer have to worry about sickness or hunger; aspiration or pneumonia; being underweight or failing to thrive. It means your child can be happy and full, ready to fight the feeding battle or possibly even put it aside.
A g-tube isn’t permanent. The love you have for your child is.
What has been your experience with a feeding tube? Do you have any advice for other moms who may be beginning their tube-feeding journey?
The Fort Worth Moms Blog hosts 19 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.