5 Questions Never to Ask a Tubie Parent

 Tubie parents hear a broad spectrum of commentary ranging from the well-meaning to the outrageous. On the spectrum of health issues that our kids face, disordered feeding may seem like the least of our concerns but it has a profound impact on the family. Celebrations, holidays, family meals are simply not the same. Think about it; How many kid's birthday parties have you been to, where the kid can't eat their own cake? My own family and friends are very supportive so if you're reading this and you've asked some or all of these things, it's ok. Your support means everything to us and we know that you are well intentioned. It's just that often times we feel a bit like a broken record, answering the same questions over and over again.

What not to ask a parent of a tubie:

1. "When are they going to get that stupid tube out?"

A. The answer, no matter who you are asking about, no matter how many times you ask, is and always will be when the child can take 100% of their nutritional and hydration needs by mouth. Frankly, for some kids, that day never comes.

2. "What does the doctor say?"

A. Doctors don't have a crystal ball so they can't forecast how long a child might need a feeding tube. The parent or the feeding therapist is likely to know more than the doctor anyway.

3. "What's wrong with him/her?"

A. Disordered feeding is an extremely complex medical problem. It takes a thorough and extensive evaluation process to answer that question and even then it can still be a bit of a mystery.

4. "Can't you just take it out?" (for temporary or NG patients) Or "stop using it?" (for permanent patients)

A. Why yes I can take it out but the real question is should I and the answer is no. Taking out or discontinuing the use of a feeding tube can cause an urgent or even emergent health crisis. Feeding disorders vary in severity so while some children may only need a little support others are completely reliant on their feeding tube.

5. "Is he/she hungry? Thirsty? Why don't you just try giving him/her (food/beverage)?"

A. Don't, just... don't.

Lastly, not so much Q and A but a bit of common sense.

• Don't blame or shame parents for their child's dependence on a feeding tube. A mother shared that people in her family implied that she was just being lazy, as if having a child on a feeding tube is less work. 

• Don't, unless solicited, give typical feeding supplies as a gift. Giving a sippy cup to a kid who aspirates every drop of water is just stupid. You might as well set your money on fire. 

• Also, it isn't necessary to mention or ask about the feeding tube every. single. time. Think about your own children. Maybe one has a crooked tooth or a funny birth mark. Would you want someone pointing it out to you? Or your child hearing someone point it out to you all the time? Of course not. 

What you can and totally should ask a parent of a tubie:

1. "How is (child's name) doing?" Or better yet "How are YOU doing?"

Most of our kiddos have multiple diagnoses which makes for a lot of doctor appointments, therapy visits, feeding regimes, medication schedules, etc. It can be exhausting, frustrating and disappointing.

2. "Is there anything I can do to help?" 

See above. You may not be able to drop a new tube or titrate the latest constipation medication, but you can offer a meal or just lend an ear. On those exhausting, frustrating days you could be the lifeline to a parent's sanity.

3. "How do I get bile out of my carpet or upholstery?"

Yeah, we can totally help you with that.