Tube Wars — 5 Minutes for Special Needs


                               

When my daughter Melissa was a newborn she refused to breastfeed.  My wife Kathy tried diligently and even got help from the nursing staff.  But before this challenge could be resolved, we ended up in neonatal ICU with a metabolic crisis on our hands.

We left the hospital, taking our sickly child home.  We were scared to death.  We had learned that  her disease required “diet management”.  We were sent home with several cans of “powder” that we would measure on a gram scale, mix with water and then feed to Melissa in tiny 50cc baby bottles.  We were taught that we had to get a “target” volume of formula into her each day or she could become dehydrated and face another metabolic crisis.  And we knew that with each crisis came elevated ammonia and associated brain damage.

Of course like many babies, there was “spit up” after each feeding.  Since we were trying to manage intake volume, we had to estimate the volume that went in—and came out.  To help with this, I put together a notebook where we logged each feeding and totaled that day’s volume.  I caught a lot of grief from Kathy who thought this was overkill … but it worked for two years.

By the time Melissa was two she was still significantly delayed in many areas.  She didn’t walk until after her second birthday.  We tried feeding her solid food in addition to the bottle but she would spit out anything that went into her mouth.

The doctors called it an oral aversion.  Unlike other babies who seem to put everything in their mouth, Melissa put nothing there.

Then the day arrived when she began resisting her bottle.  We struggled to get the target volume in each day, but fell farther and farther behind.  In only a few days, we were faced with dehydration (as predicted) and a severe episode of metabolic de-compensation that resulted in a protracted hospital stay.

That was the beginning of a tube-feeding journey that continues to this day!

We left that hospital visit with an NG feeding tube.  A nasogastric or NG tube is one that is passed through the nose (via the nasopharynx and esophagus) down into the stomach.  Feeding is accomplished by pushing a liquid formula through the tube.   The formula can be slowly pumped over a long time period, or can be injected using a syringe (known as a bolus feeding).

Before journeying home with our new feeding method, we were taught to insert the tube.  Much care is required because misplacement of the tube can result in it entering the lung rather than the stomach and the formula can be aspirated (very dangerous).

Rather than freak out, we took this in stride, seeing it as just another step in a life time journey of managing Melissa’s unique care.  And Melissa thrived with this new feeding approach.  Whether at home or in the hospital we were able to effectively manage her dietary intake.

Then on an office visit to the metabolic specialist we were confronted with their decision that Melissa should have a permanent G-tube.  There has always been considerable debate about the preference of a G-Tube over an NG-Tube.  We soon discovered that  The Tube War was on.

A gastric feeding tube (or “G-tube,” or “button”) is a tube inserted through a small incision in the abdomen into the stomach.  Placement of the G-tube is done in surgery.  We were told that there could be frequent trips to the E.R. to replace the tube if it was pulled from the stomach. And we were advised that the passage through the skin was an open wound and subject to infection.

Now remember this was happening 20 years ago.  There was no internet.  There were no support groups or lists of parents to talk with. Our research was limited to medical journals, the medical support team, and our own intuition.

We knew that one of the underlying medical conditions associated with Melissa’s disease was suppressed bone marrow and low white blood cells.  This left her especially vulnerable to infections.  And once she got sick, her metabolic condition would quickly deteriorate requiring hospitalization.

We had many concerns about the G-Tube.

First it was surgery and we were unsure how Melissa would tolerate anesthesia.  The doctors couldn’t give us any assurances.

We were also concerned about maintaining the tube.  Melissa has always been a “rough” sleeper and we were concerned that we would be facing countless trips to the E.R. for replacement.

But our biggest fear was that the G-tube site would be an ongoing source of a potential infection.  Melissa had become fairly stable with the NG tube feedings and we felt like making a change was tempting fate.

And in the long term, we hoped that Melissa could learn to DRINK her formula (which we call her “milk”).  We feared the convenience of the G-tube might provide a disincentive to drinking—which we knew would be challenging because the formula takes “nasty”.  Consider that it contains pre-digested proteins and other amino acids, it is actually like drinking vomit.  And it smells like it as well.

So after a lot of discussion and soul searching, we decided to continue with NG feedings.

To our surprise, the medical team aggressively objected to our decision.  The first shots of the WAR had been fired.

The doctor went as far as suggesting that this decision was somehow placing Melissa’s life in danger—which of course it was not.  They told us that if we continued NG feedings, Melissa would never eat.  And they reinforced what we already knew—there is a social stigma associated with a tube hanging from one’s nose!

We stuck with our decision, and here’s what happened.

For the past 20 years, Melissa has used the NG tube as the primary method of eating!

Did the continued use of the NG tube hurt or endanger her? By my rough calculations, an NG tube has been inserted through Melissa’s nose down to her to her stomach over 25,000 times (four times/day, 365 days/year for 20 years less a couple of year when we kept in in place continually).  And in all this time has been no evidence of any structural damage to her nasal pathway; no evidence of reflux after eating; and there has never been an instance of tube misplacement with the potential for aspirating her formula into her lung!

In fact, by the time she was four years old, Melissa was inserting the NG tube herself.  I’m certain that if it hurt to put down the tube (something many parents claim) then she would resist doing it.  It has only been a problem when she has a cold and a stuffy nose.

And what about the predicted “oral aversion” that would result from long-term NG tube usage? My answer is that Melissa’s oral aversion is what CAUSED her need for tube feeding and is NOT THE RESULT of using it.

Over the years this viewpoint has been affirmed as we saw that the scope of her oral aversion went far beyond eating.  Most noticeably is her aversion to putting a toothbrush in her mouth.  This has resulted in predictable results as plaque builds on her teeth.  She now has her teeth cleaned professionally each 60 days.

How about the feeling that using a feeding tube was akin to giving up the fight to get my child to eat normally? Yes, I certainly felt this way.  We were so frustrated with this that we enrolled Melissa in a “feeding clinic” at the University of Minnesota.  Through this program, experts used every technique they knew to introduce new food/textures to her in hope that she might overcome her aversion.  But after months of trying, even these experts admitted that her aversion was greater than our ability to overcome it.

We ceased the therapy and continued to work with Melissa by introducing new foods and textures.  Today Melissa eats a very narrow selection of foods.  Some of her eating is driven by social pressure.  And I am convinced that other times she actually WANTS to eat. Amazing!

And what about the social stigma of using an NG tube? Here is an area where the predictions were most accurate.  That’s because people (children and adults) can be so very cruel.  As parents Kathy and I never let it bother us.  In fact, it sometimes helped people understand that Melissa was sick (she doesn’t LOOK sick).  For several years when she was young, we left the tube in place for days at a time.  We took her out and about without a second thought.  As Melissa was able to do the tube herself, we would insert and remove it for feedings.

While I might be prejudiced, I think she was really cute even with that tube.


When Melissa started school we sent her formula every day and she would go to the nurse’s office and do her own feedings.  That continued into high school.

Melissa Drinking her Milk

From time to time we have been successful getting Melissa to drink her milk. Then we discovered a substitute “high potency” formula that tasted good enough to drink.  She now drinks this for lunch at work (together with Cheetos and Jello and a juice pouch).

But now at age 22, Melissa is feeling the social stigma.  She refuses to use her NG tube in front of her boyfriend, opting instead to drink it.  To make this easier, we have started dosing her regular milk with chocolate which masks much of the foul taste, making it drinkable when she is with friends.

I think this could become the “new normal” for her as peer pressure and the desire to conform overtakes the convenience of the NG tube and the taste of her milk.

One final note. Please remember that I am not a medical professional and I am not endorsing one style of tube feeding over the other.  Each child is unique.  And only a medical professional who is familiar with that person’s background is qualified to render an opinion.

My only hope is that our experience might somehow help others who are faced with a similar decision regarding their child’s long-term feeding options.

Email Author    |    Website About Lee

I am the father of a 22 year old daughter with a rare metabolic disorder called Propionic Acidemia. I hope to provide a "fathers view" of special needs parenting and maybe engage and encourage other men who face a similar challenges with their special needs child. Thanks for following me.

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1 Mandy November 23, 2010 at 7:47 pm

You are certainly right about her being cute even with the tube!! Love those pigtails!

2 Deana November 23, 2010 at 11:06 pm

It was a “war” for us too…but mostly an internal war. When Max finally gave up taking anything by mouth, he decided the outcome for us…and we got the g-tube. But, it’s been one of the best decisions we made, but a hard one to get to.

3 Lee November 24, 2010 at 11:24 am

Deana — I can totally relate. As parents we want only the best for our fragile children, yet there always seems to be two sides to the coin. So happy to hear that your G-tube decision worked for you and Max.

4 Jo November 24, 2010 at 4:58 pm

Thank you for sharing your experience. I checked out your blog. Your post about denial was excellent and very true. It would be helpful for any parent going through this journey of special needs to read. thank you for the wise words.

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