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.