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Friday, November 7, 2014

The Only One?

I recently read this article about a 12 year old boy who is starving because he can't eat and it was upsetting to me.  First of all because this boy and his family have to go through something like this and secondly because of this statement in the article: "He lacks all impulse to eat or drink. And he might be the only person in the world burdened with this bizarre medical condition."  (Italics mine)

The only person in the world?  Really?  Apparently, the reporter didn't bother to do much research on the subject other than on the boy featured in the article himself.  I belong to a support group on Facebook called "Pediatric Feeding Disorders/FTT/GERD/Kiddos with Feeding Tubes" with over 6000 members.  Six thousand members.  That's six thousand parents and caregivers of children with feeding issues.  It's estimated that approximately half a million people worldwide have a feeding tube.  The lack of understanding for pediatric feeding disorders is astounding and quotes like the one in the article only perpetuate the lack of awareness.  

Eight month old Little Dude is one of the many children who have a feeding disorder.  He rarely shows hunger cues and, if it were not for his strict feeding schedule, would go all day without eating.  Every three hours, I make a bottle and work with him to get him to drink it.  Sometimes he drinks the whole thing, but more often then not, he drinks very little or none so I have to feed the rest of his formula through his feeding tube.  Despite my constant efforts to feed him orally, he gets about 50% of his food via his G Tube.  After running dozens of tests, his doctors still have no idea why he doesn't eat.  The lack of diagnosis means that it can be hard to get people to take his feeding disorder seriously.  I've been accused of overreacting or just not trying hard enough to feed him.  Some people see the feeding tube as the easy way out (Sorry, but having a hole in your child's stomach and dealing with tubes, syringes, infections, etc, is actually NOT easy).  Let me tell you, until you have watched your child waste away and starve in front of you, you cannot understand how absolutely heart wrenching that is.    

Little Dude at 2 1/2 months old, shortly after having his G Tube placed

Little Dude at 7 months old, 5 months after getting his G Tube

The article concludes with a plea from the parents.  They're desperate to find others going through the same thing as them both for the support and to help them find answers.  It's heartbreaking that they think they're alone in this struggle.

So why aren't they aware that so many others are dealing with similar issues?  Probably because pediatric feeding disorders are not usually talked about.  The general consensus is that children who won't eat are spoiled and manipulating their parents.  Telling someone that your child has a feeding disorder opens you up to a lot of criticism and critiquing of your parenting skills.  Not being able to feed your child, the most basic of parental care, makes you feel like a complete failure as a mother or father.  Parents of children like my Little Dude often hear statements such as "He'll eat when he gets hungry enough.  Babies won't starve themselves!" or "Let me take her home for a while.  I'll get her to eat!"  Both of these comments are untrue and hurtful because they only make a parent who is struggling to feed their child feel even worse than they already do.

If you have a child with feeding problems, know that you are not alone.  There are many groups and pages on Facebook for support and information, internet forums and websites (www.feedingtubeawareness.com is a good place to start and has many resources), and some areas even have local groups where you can meet other parents with similar issues.

If you are blessed to have children who eat normally, don't take them for granted and please don't jump to conclusions or judgement when you see another parents struggling to feed their child.  You can find tips on how to support a parent with a child or children with feeding disorders here.       

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  1. I sure hope that people let them know that they were not the only ones. Can't believe with the internet and all you would not stumble across something.

  2. As someone with a "rare" condition myself I can totally understand how they could feel they were the only ones on earth dealing with it. I suffer from Hyperemesis Gravidarum in pregnancy. I have been told that it is just morning sickness, that I just need to eat dry crackers before I get up in the morning, that I am just not trying. I know people who have been told it is phsycho-symatic (they don't want the baby deep down inside so they are trying to get rid of it by starving and dehydrating themselves). With my first I had no support group, no idea that I wasn't the only one in the world and some of the medical professionals I came across had no idea and made some really hurtful and unhelpful misinformed suggestions. This time around I found the HG Warriors Facebook group and the improvement in my ability to cope mentally was dramatic when I had the support of others who had been or were going through the same thing. It is so important to have the help and support of other people who know where you are at. I hope this other family are able to find the help and support they need to deal with their difficult journey.

    1. I'm so glad that you were able to find a support group during your second pregnancy. Having the support you need makes all the difference! I'm hoping that the family of this little boy are also able to find a good support system that can help them figure this out.

  3. They are definitely not alone! My son had a nissen fundal placation which ties the top of the stomach and a g-tube due to major reflux issues- all due to a rare chromosomal condition. There are wonderful support networks available!


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