Deciding whether to get a feeding tube

Trying to make the difficult decision of whether to place a feeding tube?

In this video, we will discuss the decision to get a feeding tube or g-gube (gastrostomy tube) and the top five myths that make the decision more difficult. 

If you’re a parent or caregiver and someone has advised that your child might need a feeding tube, you are probably feeling very overwhelmed. I will share our story about our son and our decision to place a feeding tube when he was three months old and how we learned to absolutely love our son’s feeding tube. I will go through the top myths that impact a decision to get a feeding tube in the hopes that maybe hearing from a parent who has been through this will help you in our own decision process.

Reasons children are advised to get feeding tubes:

1. The child can’t swallow safely so can’t maintain an adequate level of hydration and food intake and are at risk of aspiration which is where food or water goes into the lung; this may happen if a baby is premature or has an underlying condition like a heart condition that makes feeding difficult or  if a baby or child has neurological injury or disorder
2. Have lost a lot of weight due to a variety of reasons (failure to thrive or oral sensory disorder)
3. Have a genetic issue or physical malformation at some point in the digestive tract that precludes them from eating by mouth

If your child is potentially in need of a feeding tube for one of these reasons, you may be feeling a range of emotions- fear, worry, overwhelm, disappointment.  All of those emotions are very common. And on top of this, you likely have already been under a great deal of stress from the underlying condition or circumstances which have prompted this feeding tube decision.
Our story
Our son was born in 2009 and he had a birth complication- his umbilical cord was pinched over his right shoulder and he did not get enough oxygen during the birth process.  After he was born, and was unresponsive, he was resuscitated and spent the next five weeks in the neonatal intensive care unit.  Although the lack of oxygen caused serious injuries to all his organs, everything recovered except a brain injury in an area of his brain that controls movement. With the help of feeding therapists in the hospital we tried every day to get him to swallow but the brain injury significantly impacted his ability to coordinate swallowing- managing food and liquids in your mouth and swallowing is actually a very complicated skill that most of us are lucky enough to do instinctively but for someone with a brain injury it’s really difficult.  Since our son couldn’t swallow, since birth, the doctors had used something called a nasogastric tube (or NG tube) to feed our son, which is a tube that goes up the nose, down the esophagus and into the stomach- food is fed through the tube several times a day.

As we were getting ready to leave the NICU, our son’s doctor advised they want to place a feeding tube so that we could feed our child more safely at home.  Like many parents facing this decision, we resisted the feeding tube.

Why did we do that?  It turns out that we were telling ourselves a lot of stories that didn’t end of being true.  I wish my current self could go back in time to my old self with what I know now- it would have made the decision a lot easier.

What were some of these thoughts we had? 
We felt like we were giving up on our son.

We thought is that if we had just done more therapy or done something differently that our child would be eating. 

We felt like the idea of a feeding tube was so overwhelming, we almost couldn’t get our heads around it. 

It wasn’t like we knew anyone else with a feeding tube so we imagined the worst and imagined that the quality of our lives and of our son’s life would be seriously impacted. It didn’t feel like something we could handle.

It felt like one of the most basic acts of parenting- feeding our child-  was being taken away from us and that was heartbreaking.

We felt like eating through a tube in your stomach was just so ABNORMAL.  Something just seemed so WRONG about needing a feeding tube.

The sad part is that, while we spent months resisting the feeding tube, feeding through the NG tube by ourselves was incredibly stressful. NG tubes can get lodged in the lung if you’re not careful, and they frequently come out and need to be replaced.  The skin on our son’s face was raw and infected from the tape needed to secure the tube to his face.  I know other families that have spent months with incredibly stress at mealtimes because their child (who may have failure to thrive or oral sensory issues) is not eating and drinking enough and can’t get even the basic amounts of food and hydration, let alone medication if they need it.

So how do parents make this difficult decision? And how did I come to actually LOVE our feeding tube?

First I had to tackle these negative ideas about feeding tubes one by one.

Myth number 1- We were giving up on our son.
Many children go on to successfully eat by mouth with a feeding tube placed, if and when they can safely eat. A feeding tube is almost always be a bridge to a better place, even if your child doesn’t end up eating fully by mouth.  And a hydrated and nourished child has a more optimal chance at success with anything.   While this isn’t the case with our child, many children who get feeding tubes for various reasons can have them removed eventually.
 
Myth number 2- if we had just done more therapy or done something differently that our child would be eating.
While we believe in the value of speech and feeding therapy, It is not a realistic to think that you can “make” a child eat by mouth in a certain timeframe, especially when they’re faced with a serious challenge like a brain injury. 

Myth 3 – The family and child’s quality of life is seriously impacted.  
We have a great quality of life, our son has a great quality of life, we work, we have friends, we go on vacations, we have family meals. Our son participates in our meals together and we can choose to feed him separately or with us if we want.

Myth 4 – A feeding tube is so ABNORMAL.  Something is just wrong about needing a feeding tube.
Everyone eats  pureed food through a tube.  Everyone.  Our tube is our esophagus and we puree the food in our mouth through chewing;  my son’s feeding tube is about 8 inches lower, on his stomach, and we puree his food in a blender. It’s not much different when you frame it that way. 

Myth 5- A feeding tube is so overwhelming and scary
As a parent, I am here to tell you that having a feeding tube is not quite as EASY as feeding a typical child but is not NEARLY as difficult and overwhelming as we all imagine it will be and it is WAY EASIER than the stress we felt before we had it. In fact, my tube-fed son eats a much healthier diet than my typical son, without all the arguments about broccoli!  There is a huge sense of relief in knowing that we can feed my son all the food and hydration he needs, along with any medication he needs without any problems.  Now, 10 years later, is a great weight and height for his age, and overall very healthy.

Here’s some additional information which might be useful.
First, watch the video to see what a feeding tube looks like.  It is really small – about the size of a golf tee. No one sees it except for the people who feed him.

These feeding tubes work like an earring.  The outer portion sits outside the stomach like a button. The “tube” goes through a very small hole (made by a surgeon or sometimes a radiologist) through various layers of tissue- skin, fat, muscle and the stomach, the bottom part of the tube sits just inside the stomach wall.  All tubes have something on the interior that holds them in place (like the back of an earring). Typically they either have a small balloon that you fill with water once they’re inserted like this or a piece of plastic.

The part that is inside the stomach works almost like a tiny shower head, and food (in a liquid form) passes through that end and into the stomach.  Keep in mind there are other types of feeding tubes that may go into the stomach and small intestine or just the small intestine, but for the purposes of this review I am just talking about a standard gastrostomy tube or g-tube.
So bottom line, this big scary feeding tube, is really just this little thing that’s about the size of a golf tee.

There are some things you need to do to take care of the feeding tube and some medical supplies that you’ll need to use the tube and care for it, but for the purposes of this video, the big takeaway is that learning to use the feeding tube takes a little bit of work in time, but I’m sure anyone watching this has worked through other challenges in your lives and can totally handle this.  Learning how to use a feeding tube just takes a little adjustment in the beginning but, for our family, was absolutely a relief to have and now we absolutely love it.

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