Before I had my daughter, I did not have a lot of experience with feeding tubes.  I had seen a few children with the NG tube in their nose, but I had never seen a G or GJ tube.  When my daughter was born with Esophageal Atresia (no connection from the esophagus to the stomach), it was medically necessary to have a G tube surgically placed.  She was actually so small, they had to do a makeshift malecot type feeding tube. They used a bottle nipple to stabilize the tube with stiches.  She also had an ostomy bag, so her tiny little stomach was just covered in medical equipment.

Why do babies need feeding tubes?

The simplest answer is babies that are not able to consume enough calories will need nutrition in a supplemental way.  So a feeding tube is inserted into the nose (NG) or into the stomach (G or GJ tube).

Common causes:

• lack of weight gain or not a normal pattern of weight gain
• inability to swallow or have a weak “suck, swallow, breathe” reflex
• abdominal or intestinal defects
• respiratory distress / issues with lungs
• nutritional issues like blood sugar regulation or electrolyte imbalances

If a child is sick, weak, or born premature, the reflex of “Suck, Swallow, Breathe” may be impaired. Sometimes children can aspirate (swallow liquid into the lungs), or the ability to swallow is missing.  In cases, like my daughter, her anatomy was compromised so she didn’t have the ability to get food into her stomach even if she had tried to swallow.  The human body is constantly in a state of swallowing mucous and secretions (spit) all day long, and you really don’t notice that.  She was unable to swallow without the liquid pooling up and going into her lungs, so she had an Anderson/replogle tube in her mouth that sucked out all the liquid.  If we didn’t take the liquid out and allowed it to enter her lungs, that could lead to pneumonia.

Not all feeding tubes are permanent.  Some children just need a chance to grow or have surgical procedures to make swallowing and eating safe again.

Oral Aversion in Babies

Some infants actually develop an oral aversion to breastfeeding or bottle feeding.  This is basically when the baby, refuses to eat.  This can look like a child pushing away the bottle, gagging, and vomiting. Babies that have been intubated or frequently suctioned, may develop oral aversion as well. It appears that in some cases, medical procedures can traumatize the mouth area or cause hyper sensitivity to the touch. 

Oral aversion can also caused by a fear of eating due to painful swallowing.  Typically a child will not keep causing themselves pain, so they will avoid eating in order to not be hurt.  This is especially true with Acid Reflux or GERD.  After a child eats, stomach acid can rise up into the throat and mouth and cause a lot of pain.

Oral aversion can extend into the toddler years, if the child has experienced mouth ulcers (painful sores in the mouth), has had trauma or injury to the mouth, or has frequent vomiting episides.

Picky Eater or AFRID

Most parents have dealt with pick eaters at mealtime.  This could be due to taste preference for sweets, or a texture issue with meat. A typical picky eater will eventually grow out or switch phases of eating.  My now 4 year old son ate an obscene amount of cheese quesadillas and peanut butter sandwiches for almost a year.  We finally figured out that my son is not a fan of change and was exerting his ability to be in control over his food.  This picky eating happened to happpen around the time I was pregnant and my daughter was born.  So his eating habits could be directly related to what was going on in his environment. AFRID (Avoidant Restrictive Food Intake Disorder) is more like picky eating to an extreme and is not something that children change their minds about or “grow” out of.

Signs of AFRID

• low weight/ no weight gain
• nutritional deficiency (usually determined with blood work and other tests)
• sensory issues with food (texture, tastes, etc)
• no interest in food at all
• traumatizing event associated with food like vomiting or choking

Usually when a toddler is diagnosed with AFRID, a parent has already tried a million different things to get the child to eat and to eat anything.  A toddler’s brain is not as logical thinking as we would like sometimes.  Unfortunately, a child will not understand that if you don’t eat, you will become sick.  

AFRID is considered to be an eating disorder, but it is not like anorexia or bulimia.  AFRID is actually very rare in small children.

Most doctors will start treating AFRID in children with therapy.  This could be occupational or speech/feeding therapy.  Depending on the child, this may just look like playing with foods and pretending to eat.  Sometimes it can take a long time to get to root cause of AFRID.

 Are Feeding Tubes in Babies Permanent?

Depending on the diagnosis and the reasoning for having a feeding tube placed, some children will go on to be able to eat by mouth partially or fully.  In the case of my daughter, once she had surgery to correct her defect, she was approved to start trying food and drink by mouth.  We have been following a process called “Child Led Tube Weaning”.  It starts with a tasting phase to help conquer oral aversion, and moves on to slowly building up her amounts by mouth and decreasing her amounts by feeding tube.  As with an weaning or training method, it takes a lot of patience and can take a lot of time and practice.

I fully believe that the best way to wean a child off of a feeding tube, is to throw all expectations and comparisons out the window.  Every time she didn’t meet my expectations or I compared her to other children, I would end up depressed and frustrated.  “Why isn’t this working?” was a phrase that constantly went through my mind, and I was starting to convince myself that she just will never learn how to eat by mouth.

One day, while I was throwing away another mostly uneaten container of baby food, I felt so defeated and just done with the whole thing.  I might as well just get used to the GJ tube that she has and give up trying to feed her by mouth.  I looked at my daughter’s face covered in carrot puree (more was on her face then what got into her mouth), and she was smiling and giggling, and just a happy little girl!  I realized, she is not missing out on anything.  She is living her best life, having fun, and enjoying herself.  She does not know that most kids her age (roughly 9 months old) are eating and drinking by mouth.  She is growing and thriving while being fed through her stomach.

This sparked an idea that has completely changed my perspective on how I approach almost anything with my daughter now.  I am going to make learning and practicing fun.  I am going to stop pressuring myself and my daughter, and I will accept that this is our current situation.

Almost immediately, my daughter could sense that I was calm and I didn’t get distressed when she didn’t put anything in her mouth.  I started thinking outside the box, and started using what I already had on hand. I experimented with different methods and tools and expanded on the things that worked, and adjusted things that failed.

I always recommend that you work with Occupational Therapists and Speech Therapists to help teach your children to eat by mouth. But let’s face it, an hour or two a week, is not enough to teach a child to eat.  You have to make a plan and implement it at home all the time.  Consistency is key!  If you only practice a new skill every once in a while, you won’t be able to grow in that skill as quickly as someone who practices multiple times a day.  Thankfully, eating is something that most people do off and on all day every day, so I used this to my advantage.

If your child is ready to start overcoming an oral aversion and ready to wean off their feeding tube, please contact your medical team and get a swallow study done.

What is a swallow study?

There is a couple different ways that doctors perform a swallow study.  Most are done with the help of a radiology department, and consist of feeding your child food or liquid.  As the child eats/drinks, the radiologist will take x-ray type pictures to see if any of the food and drink is going into their lungs.  This is called aspiration and can lead to very serious complications like pneumonia.

Our team had my daughter try different thicknesses of liquid through a bottle, to see which thickness worked best for her.  She did really well on thicker liquids, and tended not to drink as well on the thinner liquids.  Her issue was more chugging the thin liquids, which can be easier to aspirate on.

After our swallow study, we were approved to begin a plan to introduce her to foods and drinks at a tasting level. This is where your occupational therapy and speech therapy will really come in handy.  They will work with you on different techniques and tools that can help your child learn to eat and drink safely.

I will be going over a lot of these techniques and tools in later posts.

Takeaway/ Final Thoughts

As a medical mama, I used to get so overwhelmed and depressed because I had no idea what the future holds.  My daughter’s birth defect is pretty rare, and her particular type is super rare.  So I didn’t have a lot of “success stories” or even a good idea of what to expect.

The medical world and research is constantly discovering new conditions and procedures to help treat issues with children.  If my daughter had been born 30 years ago, her life expectancy and general well being would have been really low.  I am so thankful that she was born at a time, when surgeons were so much more knowledgeable and skilled to fix her main issue and her subsequent issues that popped up over time.  She developed slow gastric emptying, severe acid reflux, and a hiatal hernia.  

Each of these issues, would delay and sometimes stop our journey to Tube Free.  I felt so emotional every time we would have to stop our journey and go NPO (nothing by mouth) for weeks and months.  It was so heartbreaking to go back to square one over and over.

Just know that getting to Tube Free can have roadblocks and hiccups along the way.  Celebrate the small victories and the wins, but also acknowledge that it will probably be a bumpy road. 

Being a mom is so tough, add on to that having a medically complex child, and the weight of the world seems unbearable at times.  My best advice for tube weaning and for momming in a medically complex world, is to focus on today.  Stop thinking ahead weeks and months and years, and truly just focus on what you can do today and tomorrow.  Small steps today can lead to huge jumps in the future.  I like to look at it as building blocks, and every day I try to work on one block at a time.  Even now looking back over the last year, I can see the gigantic leaps that my daughter took to get to where she is today.  It’s hard to see it by just looking at individual blocks, but when you look at all the blocks together, it is a truly amazing sight.  In one year, my daughter went from NPO to 100% orally fed and I am so excited for what the future brings for her!