Hand to Hold's Official Blog: Written by Parents for Parents

Feeding Tube or Diet Fad?

I am a pretty laid back person.  It takes a lot to rattle me.  I was rattled on Monday morning.  While I was getting my daughter ready for school, I was watching the “Today” show.  A story came on about a doctor in Florida offering a “New Diet Trend” for brides.  I will admit, I have tried many diets myself, so this got my attention.  However, this is a diet that I will NOT be trying.

The “diet” consists of the doctor placing a feeding tube through the nose and into the stomach of the “dieter.”  Then the feeding tube is hooked up to a feeding pump pushing 800 calories of the K-E formula a day.  First, the formula in the K-E diet was created to help people with seizure disorders.  This is not a formula created to lose weight (this is not SlimFast).  Second, the formula can be drunk, why on earth do they need to place a feeding tube?  If the dieter is prone to cheating on diets, a feeding tube will not prevent that.  Last, and most importantly, feeding tubes are MEDICAL devices.  Feeding tubes are used to help individuals that can not eat obtain enough nutrition to live.  These are life saving medical devices, not diet tools!  I am ashamed of the brides taking part in this diet.  I am disgusted by the doctor offering it.  I am also very saddened to see that our society is okay with this.  What has happened to us?  This is not okay!

I watched the “Today” show in horror.   I didn’t think it could get worse.  I was wrong.  During the Kathie Lee and Hoda segment later on in the show, the disgust and shame continued to spread.  The disrespect that Kathie Lee and Hoda showed to the special needs community was appalling.  They acted “sick” at the thought of a feeding tube.  Then they went on to talk about the bag holding the pump as an eyesore and burden.  Do you think that they would be grossed out by someone with an oxygen nasal cannula helping them to breath, or offended by that person carrying an oxygen tank or concentrator?  Just as the cannula provides air to breath – feeding tubes provide food to live. (This topic starts at 5:12.)

Before I had my daughter I knew very little about special needs and medical issues.  When I heard the term “feeding tube”, I pictured very ill adults, in a coma, clinging to life.  In 2006 my daughter, Casey, came into this world.  She suffered a trauma at birth that resulted in a severe brain injury.  The brain injury came with many medical complications (many life-threatening, all life-changing).  She will be six next week.  Each birthday is a huge victory for our family.  We were told every day that Casey would never go home at all, much less see her first birthday.

Some of the medical complications include no gag, suck  or swallow reflex.  Without these abilities the only way that my daughter was able to get any type of nutrition was by an NG Tube (just like the ones being used in this offensive diet).  The tube was changed every few days, and there were many risks and complications involved.  One risk that terrified me was that if it was not placed correctly, the food could empty into her lungs instead of her stomach.  After a month, and many tests/procedures, it became obvious that Casey was not going to be able to obtain her reflexes in the immediate future.  The medical team talked with us extensively and after a lot of research, meetings and prayers we consented to surgery to place a G Tube (a tube directly from the external abdomen into the stomach).

From that day forward Casey has received all of her nutrition through her G Tube.  The G Tube plays a huge role in Casey being alive today.  Without it, she may not have ever made it out of the hospital.  I worried at first that I would not be able to handle it, but in a very short time it just became part of Casey.  We have even found ways to accessorize it with cute little dressings around the tube itself and fun backpacks to hold her pump and food.  There are many great organizations like Pumpkin Packs and Patchwork Peddlers that provide ways to have fun with feeding tubes (boys, girls, or neutral prints).  My daughter is able to lead a very full (modified) life.  She has many friends and family that love her.  She is funny.  She likes to go shopping and be a girl.  All of these things are possible because she has a feeding tube.

I have learned many lessons in the past six years.  One of the hardest that I have learned is patience and understanding.  When we go out, a lot of people stare.  Between the G Tube and Casey’s other medical equipment, we seem to draw a lot of attention.  I used to tell myself they stared because she was just so darn cute.  That may be partially true, but I know a lot of the stares are from curiosity.  Many people (including myself before Casey) have never seen this type of equipment.  Most people have the same gravely ill adult image in their head when they hear terms like “feeding tube.”  I have learned to take these stares as opportunities to educate others.  I take time to show kids that it’s not scary.  I tell adults that sure, it can be a lot of work, but she is still just a little girl.  I would say at least 99% of these people appreciate me taking the time to teach them.  When we see them again, instead of staring they often will come over and say hello, or share stories of other people they have since educated.

Then there is the other 1%:  Kathie Lee and Hoda, the doctors placing feeding tubes for dieting, and the horribly vain individuals doing this.  All I can say is that these people are missing out.  They will never know how amazing and strong some people can be.  If they are not able to see past medical devices, they will never know the pure joy and love that people like Casey bring into our lives.  I think the doctors behind this diet should lose their medical licenses.  I think that Kathie Lee and Hoda owe the special needs (tubie) community an apology.

I hope that people doing this diet get to meet someone who is living a full life on a feeding tube.  I hope that when they do meet these amazing people, that they see the error of their ways.  I also long for a society that stops obsessing about weight.  Let’s focus on health instead.

Marty Barnes About Marty Barnes

Marty Barnes (TX) is mother to Casey, a preemie born at 36 weeks.  Casey suffered trauma during delivery which resulted in brain damage, and she has multiple medical needs as a result, including a life-sustaining feeding tube. Marty established the CLU Campaign, a grassroots inclusion project, along with her daughter’s site which chronicles their journey. Marty is an active community volunteer and currently gives her time to Hand to Hold, Mommies of Miracles, and Texas Parent to Parent.

Comments

  1. It takes a lot to offend me too, and I was sick to my stomach when I read about this diet, and about Hoda and Kathie Lee’s report. I am not surprised at their ignorant comments – when my daughter was in the NICU, I’d often pump while their Today Show hour was on. As the parent of a tiny little girl fighting tooth and nail to grown, and the possibility of a feeding tube in her future, I would like each and every one of these brides to come spend some time with our children. I am sure they could learn a lot from them.

  2. Beautifully written! My son had a nose and mouth tube in his 50 day NICU stay and the students I work with at my job have G-tubes. I think of feeding tubes as a blessing, what a miracle children who cannot take food or drink by mouth can be nourished another way. What a good point about the fact the women could just drink the formula by mouth, why do they even need the tube!? I don’t know why I didn’t think about that… These women are bizarre and extreme and I’m sorry but Kathy lee and Hoda are idiots. I’m not surprised they made ignorant comments like that at all. I would be more shocked if they said something partially intelligent and insightful.My son does not need feeding tubes anymore so I cannot say I know how you feel, just know that your daughter is so important to this world and will touch more lives than the ridiculous dieting women and TV personalities ever will. Thanks for sharing your story.

  3. Well said, Marty! 🙂

  4. I first heard about this after someone posted it on Facebook. I, too, was shocked by this. Why in the world would they want to insert an ng-tube down their nose when they could just drink it? Stupid! I remember wrapping each of my twins up into a “straight jacket” style swaddle to insert their ng-tubes. They both came home from the NICU with feeding tubes. It would take both my husband and myself to insert it while they screamed the entire time, and as you mentioned, try not to get it in their lungs instead of their stomachs. It was horrible. I can’t imagine why anyone would do this to themselves!

    Your daughter is an amazing inspiration. I love the picture of her in the pool with you.

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