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Ripped from the headlines: Why Awareness is SO Important!

{Alternate title: Late night musings of an angry tubie momma who spent 2 hours working on this blog post only to have Blogger and/or an interruption in internet connectivity POOF it away so she had to start all over again}

{Alert: This will be wildly opinionated so feel free to have your own opinions but be respectful if you choose to comment on mine, please and thank you.}

Feeding tubes don't make headline news very often so when they do, those of us in the feeding tube community take notice. Especially when the story evokes fear and anger in our hearts.

A couple months ago, I wrote a scathing blog post about the story that ran on the Kathie Lee & Hoda hour about the use of NG tubes for the "K-E Diet" aimed at helping brides shed a few quick pounds before dress shopping and their weddings. This story was met with mixed opinions even among members of the feeding tube community. There was a question of ethics in the trivial use of a medical device, fear of what impact the story may have on the public image of tube feeding, and the flippant manner in which Kathie Lee and Hoda talked about feeding tubes. The story that was brought to my attention today, however, is without question outrageous and unacceptable.

Melinda Deaton was preparing to travel from Dallas, TX to Minneapolis, MN to undergo medical treatment at the Mayo Clinic. In a story reported by Omar Villafranco of NBC 4 New York, Deaton had made this trip many times recently with no trouble at airport security, but this time things did not go as usual. Due to complications of gastric bypass surgery, Deaton has a PEG-style G tube similar to this:
Photo Source: www.corpakmedsystems.com

The balloon at the bottom retains the tube in the stomach and the round plastic disc keeps it in place from the outside. As Deaton passed through the security checkpoint, TSA agents noticed something hanging from her stomach and pulled her aside for a pat-down. Several of the articles stated that Deaton was then selected for a "strip-search" in which the TSA agents visually inspected her G tube. Deaton reported that upon seeing the tube and surrounding granulation tissue, the agents reacted with disgust. Then they proceeded to handle the tube at which time they decided that her stoma needed to be swabbed with chemicals to test for bomb making materials. SWABBED WITH CHEMICALS. HER STOMA. WITH GRANULATION TISSUE. TO TEST FOR BOMB MAKING MATERIALS. {Because terrorists are always hiding bomb making materials in painful holes in their stomachs, right? Idiots. Moving on...}

After handling her tube and swabbing her stoma, they confiscated the pre-packaged applesauce and pudding she was attempting to bring on the plane with her. Because of her medical conditions, she is on a restricted diet which requires soft foods. Her food was thrown into a trash can and later retrieved by a supervisor who took it to a location out of her sight and performed some kind of testing on it before returning it to her.

{Deep cleansing breaths...}

When I first heard about this story today, I was livid. I felt sick for this woman and what she was subjected to in the supposed name of public safety and antiterrorism. There are SO many wrongs here.

(If you want to see the news reports that I got my information from, they are here, here and here. Watch the videos too.)

First and foremost, if everything happened the way it was reported in the numerous accounts, the TSA agents involved violated several of the TSA's own policies which are readily available on their website. I'm rather well versed in these policies because I researched them thoroughly before flying with Raya last month. Second, there is an issue of common decency here. By her account, this person was not treated with respect, no consideration was taken for the fact that she had what was clearly a medical device STICKING OUT OF HER STOMACH, and her health was potentially jeopardized by the misconduct of the TSA agents who screened her.

Here are some of the statements from their website that apply in this situation:
1. "If you are wearing an exterior medical device and are uncomfortable with going through the metal detector or be handwanded, you may request a pat-down inspection and visual inspection of your device instead." Ms. Deaton WAS comfortable going through the metal detector and did not request a pat-down or strip-search.

2. IF in fact, there was some valid reason for conduction a pat-down/strip-search, then THIS statement applies: "Advise the Security Officer if you have an ostomy or urine bag. You will not be required to expose these devices for inspection." While I do realize that this statement is likely referring to colostomy bags, a G tube is technically an ostomy as well. GastrOSTOMY. Therefore, she should not have been required to remove her shirt and have her tube inspected, visually or otherwise. And really. WHY would anybody who is not a healthcare provider or caregiver even WANT to touch a stranger's G tube?!? REALLY. I remember being afraid of that the first time I flew with Raya. She had a GJ tube and I was extremely protective of it because I didn't want to risk having it come out, especially during travel. She was continuously fed into the J port and had a bottle or bag of bile hanging from the G port which ranged in color from fluorescent yellow to dark green and smelled like a combination of vomit and poop. As we approached the security checkpoint, in my head I was just DARING them to insist on inspecting the nasty thing. It would have served them right, but they didn't. They were actually quite nice, but I digress...

3. Since they DID decide that a pat-down/strip-search was warranted, special care should have been taken to not irritate or disturb a sensitive area such as a stoma with granulation tissue. If you're not familiar with granulation tissue, it's the bain of every tubie's existence. Granulation tissue forms as the body attempts to heal the stoma. It is delicate, sensitive, bleeds easily, grows rapidly, and is extremely painful (or so I've been told). On the TSA's website, it states, "Security Officers should be sensitive to your condition by avoiding accidentally bumping or hitting the handwand against your body where a sensitive area is located. They should also use light pressure and contact when inspecting a sensitive area or painful area." Pardon me for asking, but how does being sensitive to a painful area include handling a tube attached to a woman's abdomen and then swabbing painful, delicate granulation tissue with presumably non-sterile swabs containing mystery chemicals?? (Yes, a TSA representative confirmed that chemicals were involved but wouldn't release what type so Ms. Deaton's granulation tissue has been exposed to mystery chemicals.) Even without granulation tissue, some people's G tube sites are very sensitive and should not be bothered except to connect and disconnect feeds, clean, and give medications.

Because granulation tissue IS delicate and bleeds easily, it is prone to infection. Infections at the tube site can be very difficult to clear up, even in healthy individuals. Ms. Deaton's husband stated that as part of his wife's condition, she has a weakened immune system. For her, a simple G tube infection could lead to serious complications and even death. Her tube site never should have been touched. (*Side note: For people traveling with TPN requiring an accessed port or central line, here are the TSA's policies on inspecting dressings. They should also NEVER be touched! YOU know that, but the general public may not understand the gravity of that.)

Which leads me to another point. Have you ever seen a TSA agent remove their gloves and put on new ones? Me either. (except once when I asked them to) That's because they're wearing the gloves to protect them from whatever they're touching. Not to protect whatever they're touching from whatever else they've been touching. Unless Ms. Deaton specifically asked the agents to put on clean gloves prior to handling her G tube (which they were not supposed to do), they potentially exposed her to goodness knows what kinds of bacteria and germs from everything else they touched with those gloves. None of the articles mentioned whether or not agents wore clean gloves, but they don't routinely change their gloves in between passengers or else they'd go through thousands of gloves per day.

4. According to Ms. Deaton, the TSA agents who performed her search were anything but professional about it. In an interview with a Dallas Fort Worth news station, Deaton said, "When I pulled my shirt out and they catch a glimpse of it, they both go, 'Ugh!'" TSA's website states, "You can advise the Security Officer when you have a special situation such as accompanying loved one's remains, accompanying a terminally ill parent/family member, en route to a medical facility for an operation, medical procedure, or treatment. Security Officers have been trained to offer their support and assist you during these difficult times." Ms. Deaton WAS en route to a medical facility for treatment and by the time these agents decided to subject her to a pat-down/strip-search, it was quite evident that she had a "special situation". IF these agents had actually been "trained to offer their support and assist during these difficult times," then they should have responded respectfully to seeing a medical device. I realize that G tubes are not pleasant to look at, especially when they're surrounded by angry-looking granulation tissue, but there's no excuse for reacting that way. This woman was alone in a semi-private screening area with two TSA agents who required her to lift and/or remove her shirt and they add to her humiliation by reacting with disgust upon seeing her bare stomach. Absolutely unacceptable.

5. The food is a sticky situation. TSA's liquids policy states:
3.4 ounce (100ml) bottle or less (by volume) ; 1 quart-sized, clear, plastic, zip-top bag; 1 bag per passenger placed in screening bin. One-quart bag per person limits the total liquid volume each traveler can bring. 3.4 ounce (100ml) container size is a security measure.
 The containers of applesauce and pudding that she had in her carry-on luggage were about 4 ounces each. In most cases, these foods would be considered over the limit of what's acceptable under the 3-1-1 liquids policy. HOWEVER. There's a loophole. Here's what another section of the liquids policy states:
To ensure the health and welfare of certain air travelers, in the absence of suspicious activity or items, greater than 3.4 ounce (100ml) of the following liquids, gels and aerosols are permitted through the security checkpoint in reasonable quantities for the duration of your itinerary (all exceptions must be presented to the security officer in front of the checkpoint):
  • Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;
  • Frozen items are allowed as long as they are frozen solid when presented for screening. If frozen items are partially melted, slushy, or have any liquid at the bottom of the container, they must meet 3-1-1 requirements.
Melinda Deaton has a medical condition that requires a soft foods diet consisting of things like applesauce and pudding. These are food items that may not be readily available to her on the airplane or in the airports. Due to her condition, she likely needs to adhere to a consistent meal schedule in order to avoid becoming ill. This "loophole" should have protected her from having her medically necessary diet thrown in the trash. (I included the part about frozen items because things like applesauce and pudding could be easily frozen.) Ultimately a supervisor removed her food from the garbage can where the original agents put it and allowed her to have it, but only after taking it to another area out of Ms. Deaton's sight and testing it. Would YOU want to eat your food after it had been thrown in the trash can and then subjected to some kind of testing that you were not allowed to observe? Should not have happened.

Okay. I understand. I get that in order to protect all of us, certain security measures must be taken and procedures must be followed. Adequate security measures and common sense are not mutually exclusive. We can have adequate security without badgering and endangering the health of passengers with medical conditions. My heart really goes out to Melinda Deaton. What happened to her was unacceptable and I think there is much to be learned from this situation, both for those traveling with medical devices and for the TSA.

Here are some things to keep in mind when traveling:
1. If you are traveling with a tubie or if you are a tubie that will be traveling, it is VITAL that you research policies and understand your rights and responsibilities. I tend to be overly cautious in certain situations so in preparation for my recent travels with Raya, I looked up every TSA and airline policy that was applicable to the items we were traveling with, printed hard copies and highlighted everything that pertained to us. I put those copies in a plastic bag and tucked them into the soft cooler that held her medications, Cole's EpiPen, bottles of sterile water, and a baggie of syringes. The reason I put them in with the medical supplies they were in reference to is because of a story I saw on the news about a woman who was detained because she was flying with a large quantity of breastmilk but no baby. She had printed out the TSA's policy on breastmilk but when the agents detained her, they would not allow her to retrieve the printed policy from her carry-on bag to show it to them. After seeing that, I thought it seemed like a good idea to have the policies in a place where they couldn't NOT be seen by TSA agents if necessary. Know the policies that apply to you, print them, and have them readily accessible when you go through security and not buried in your carry-on luggage. If you have them, you won't need them but if you don't, you will.

2. Melinda Deaton was wearing a medic-alert bracelet that contained a USB drive with statements from her doctors in regards to what she would be traveling with, why she was traveling, etc. This was a very smart thing to do from an emergency standpoint, however none of that information was ever accessed by TSA agents, so in this case it is better to have a printed hard copy of any letters or statements by your medical providers. Keep them with your printed TSA policies so they will be readily accessible. This is especially important in a situation like Melinda's where the foods she was carrying on are not typically identified as medical food but were required as a part of her medically necessary diet. If this was Raya and I needed to bring a container of her beloved plain Greek yogurt because that's the only thing she wants to eat, I would get a letter from her doctor, highlight the part about the yogurt, and put a copy of it in the baggie WITH the container of yogurt. (that's how overly prepared I like to be.) I got a letter from our doctor the first time I flew with Raya. Nobody ever asked to see it but just knowing that I had it gave me peace of mind.

3. The TSA allows people who need assistance through security checkpoints to have someone come with them. When I flew home with the kids last month, my mom was able to get a gate pass so that she could help me get my crew & all our gear through the security checkpoint. TSA policy states: "If you require a companion or assistant to accompany you through the security checkpoint to reach your gate speak with your airline representative about obtaining a gate pass for your companion before entering the security checkpoint." I would venture to guess that Melinda would have felt much better if someone had been with her to help her stand up for her rights. Maybe the whole situation would have played out differently if she hadn't been traveling alone. If you are a tubie and will be traveling, PLEASE KNOW that you CAN have someone accompany you through the security checkpoint by explaining your needs to the ticketing agent and asking for a gate pass. If you do bring someone to assist you and end up being selected for additional inspections, "Your companion, assistant, or family member may accompany you and assist you during a private or public screening. After providing this assistance, the companion, assistant, or family member will need to be rescreened." Well, really this whole section bears quoting:

"If a personal search is required you may choose to remain in the public area or go to a private area for your screening. If you refuse either option you will not be able to fly. You should be offered a private screening before the beginning of a pat-down inspection if the pat-down will require the lifting of clothing and/or display of a covered medical device.
You should be offered a disposable paper drape for additional privacy before the beginning of a pat-down.
You may request a private area for your personal search at any time during the screening process. Your companion, assistant, or family member may accompany you and assist you during a private or public screening. After providing this assistance, the companion, assistant, or family member will need to be rescreened."
In reading the different accounts of Melinda's story, it appears that some of these procedures were not followed. I don't see anything anywhere about the policy on "strip-searches." None of the articles went into detail about what anyone meant by the term "strip-search" so it's up for interpretation but I just can't imagine why they would have needed her to remove any of her clothing.


If you are a TSA agent, BE RESPECTFUL. Be patient and polite. TRY TO UNDERSTAND that having medical devices, especially things like G tubes, trachs, and colostomy bags can be embarrassing for people who aren't used to exposing them to strangers and be considerate. They are difficult to live with and scary to travel with. USE COMMON SENSE. Put on clean gloves if you're doing a pat-down on someone with a medical condition. Don't get on a power trip just because you have the authority to prevent people from getting on airplanes. And for heaven's sake, PLEASE don't touch anyone's medical devices!! (Seriously, don't touch. You don't really want to anyway, you know.)

The key to traveling with someone who is tube fed or has any other type of medical device or condition is PREPARATION. The more research you have done and the more prepared you are, the less likely you are to have problems arise. ARRIVE EARLY. Be patient and polite. Don't go into it expecting trouble. Be prepared to explain your conditions and what you're traveling with. Don't be belligerent or cop an attitude with the TSA agents; I think most of them don't get paid enough to compensate for some of the things they have to put up with. Only carry on what you need for the duration of your travel time and what can't be quickly replaced if your luggage is lost (i.e. feeding pump, specialized formula, meds, etc.). Expect to have to unpack everything and open cans or cartons of ready-to-feed formula (have empty bottles or a pump bag to pour it into in case you have to open it). Don't be surprised if you're selected for a pat-down. BE RESPECTFUL. And above all, please don't allow stories like what happened to Ms. Deaton to scare you into not traveling. Crappy things happen to everybody at some point so you might as well just do what you want to do. Live your life and embrace the challenge. Do the best you can to prepare ahead, expect the unexpected, and don't let fear prevent you from experiencing new things.

{I have to say that although I've only flown 4 times with Raya, the TSA agents that have conducted our security screenings have for the most part been fabulous and treated us professionally. In all but one case, they never even asked to see Raya's G tube. I don't think any of them wanted to make trouble for us and we certainly didn't want to make trouble for them. We did have one formula spillage incident where the TSA agent didn't put the lids on tight, and we had one close call where I thought we were going to have to open all of our unopened cartons of formula, but overall we have had good experiences going through security.}

This story is just another illustration of the importance of raising awareness of tube feeding. If those TSA screeners had a friend or relative with a G tube, maybe they would have been more understanding of Melinda Deaton. If they had seen a presentation in their elementary school as kids or seen stories on their local news during Feeding Tube Awareness Week of how G tubes saved lives of small children, maybe they would have recognized the device and treated her differently. {if their mommas had raised them to be polite, they wouldn't have been so disrespectful when they saw her tube and acted all disgusted by it...} All I'm saying is that as the general public becomes more familiar with feeding tubes and other medical devices, the less Melinda Deaton stories there will be. If we want greater understanding and acceptance, it is our responsibility to educate those around us.

Comments

  1. Thanks for posting this. You are very articulate and thorough and I appreciate that. I have flown many times with my tubie son and we have had varying experiences, but nothing like this poor woman experienced. It is amazing how inconsistent the airport personnel are, clearly no one really knows the policies. We approach every airport gate with trepidation just waiting to see what they will say each time.

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