11 July 2011

Behavioral Feeding Model

:::EDIT: As I was just finishing up spell check on this very long blog post, I saw several comments roll through.  I just wanted to say thank you all for the conversation - for the person who felt myself vulnerable and offered me encouragement - for the person who reminded us that I not only welcomed but encouraged differing opinions here - and for the person who cared to offer new suggestions for approaching Bennett's feeding issue.  I appreciate that anyone would find Bennett's journey compelling enough to read, much less post a comment in response.  So, thank you.  To be honest, I wouldn't have given this topic any bit of my time if I didn't find some of Olga's thoughts, at least, interesting.  And while I don't regret the method we've chosen for feeding Bennett, I suspect that Olga and I agree with each other more than we don't.  The post below is a long one.  So, I've bolded key sentences to help those who feel the need to skim.:::

So, I wanted to address concerns over the feeding protocol we have chosen to use with Bennett. Olga and I can chat privately about further questions but I felt her concerns and questions were valid enough to fully address on the blog for others to read. I share this publicly because I believe Olga is a sensitive and caring person, who feels conviction over the way tube-fed children are weaned and, from what I know, seems to express her concerns, not out of a desire to attack but out of a desire to help. So, I share this on a public forum as a way to explain more to Olga - but also to friends and family - about how we got here and why.  However, this post is mostly for my benefit - to remind myself that while our methods might not be popular with everyone, they were chosen carefully and with much thought, as we try to do with every decision of Bennett's medical care.

Having said that, there is a fine line between justification and explanation. I'm happy to explain but I don't want to justify. There are too many parenting decisions to be made and too many opinions to worry about pleasing everyone. My husband's and my decisions on how to feed, clothe and discipline Bennett (and Oliver) are made carefully and privately as we want to raise the boys in a way that most reflects our personal beliefs and values. So, I am not writing to defend myself. Instead, my goal in this post is to give insight and explanation of where we came from with regards to eating: 

Bennett's eating issues began at birth.  Bennett was practically born with a g-tube. In fact, he was given one (without our knowledge) during his emergency life-threatening bowel surgery at 12 hours old in which a large portion of his colon was removed.  During Bennett's recovery, he had many tubes in his mouth (so many that a pacifier couldn't even fit in his mouth) which likely caused him to develop an oral defensiveness to things in his mouth.

We didn't use the tube until he was about 1 month old and only after my request to do so.  Bennett did not nurse long since it was determined, fairly early, that high caloric formula would be best for his malabsorption issues. I chose to give up nursing as breastmilk was not in Bennett's best interest with regards to calories and weight gain. 

Concerned that Bennett was unable to sustain his sucking abilities long enough and, therefore, unable to eat enough to survive, the doctors determined he would have to stay in the NICU until his weight increased.  At this point, we had been in the NICU for a month and diagnosed with Cystic Fibrosis.  Since he was no longer critically ill due to his meconium ileus, I suggested that the doctors use the tube so that we could get my newborn home as soon as possible. As early as 1 month old, I had to make a decision between Bennett's need to gain weight and his need to be at home in the arms of his mother and father.

The doctors finally gave in to my wishes and allowed me to use the g-tube to help him gain weight. Within a short period, he was showing signs of improvement.  However, we spent more than two weeks in the hospital dealing with intolerance of formula, concerns over reflux and a removal of his ileostomy. This, in addition to projectile vomiting due to an infection at 5 months, continued to prolong the development of his natural eating abilities that might otherwise have developed.

Bennett was 6 days old when we learned he has Cystic Fibrosis. At this time, I was instructed that in order to keep Bennett alive, I must give my newborn life-saving enzymes with apple sauce and a spoon before every bottle or bolus.  The enzymes could not be given through the tube.  They also could not be given with milk. Starting at 6 days old, I had to force my baby to take food with medicine that, if not given to him, would allow malnutrition and death to overcome him. Children with CF cannot live without these enzymes.

We used the tube for many months, offering Bennett food at times but realizing that his hunger cycle was almost nonexistent. I realized this on my own one day when I realized my newborn never cried out of hunger. Since I bolused his food (aka fed him a bottle through the g-tube), I was very much able to tell if he was hungry. As a baby, Bennett never cried for food. He seemed to have no hunger cycle. (See this study on toddlers with CF.)

As Bennett got older, we gave him opportunities to eat food and explore it as any normal child should do.  Sometimes, he was interested. Other times, he was not. (See: 5 months, 7 months, 8 months, 9 months) I kept using the g-tube but we kept trying to find ways to wean Bennett naturally.   Our desire has always been that Bennett would have a wonderful and natural relationship with food.  We worked hard to catch up on the work that Bennett should have been doing naturally during this time.   I worked with our Early Childhood Intervention (ECI) speech therapy program but did not see enough results.  So, we moved to using private speech and occupational therapists, hoping they would have more answers. 

At one point, feeling more and more desperate to help Bennett learn to eat, I heard online about a thing called a "Feeding Clinic," a multi-disciplinary approach to feeding. I searched the internet and found there are very few Feeding Clinics in the United States. But there happened to be one in our backyard (Dallas). I also learned our Children's Hospital offered a "feeding clinic" but it was more of a teaching course for parents than an actual medical facility focused on weaning children on feeding tubes. So, excitedly, I called Baylor's Feeding Clinic and decided to go in for an evaluation when Bennett was a year old.

The evaluation was very good and it was quite clear that the staff at the Baylor Feeding Clinic knew what they were doing. So, thankful to have another option in the way of helping Bennett, I put our name on the list to be admitted when he was over 18 months.  One of the biggest benefits to me of the Baylor Feeding Clinic was the inclusion of a child psychologist.  I had felt that one of the things I didn't understand most about Bennett's eating issues is where he fit into them.  I was very thankful that in this program someone would be there to monitor his emotional well-being and growth.

In the meantime (6 months), I kept offering Bennett food in a non-pressured fun way. And, I saw him continue to eat (see here, too - and here! and you can't forget this one!) ... but it was all far far below what he needed to consume in order to be weaned from the tube.

Before being admitted to the Baylor Feeding Clinic, what I considered as our last-chance approach to eating, I called in a Dietician from ECI and worked with our Speech Therapist to wean Bennett from the tube at home. This was all under medical supervision, despite that I received a hesitant approval from the CF doctor (who had been very concerned that Bennett was still not where he needed to be with regards to weight).

But Bennett lost too much weight and the doctor suggested we go back onto the tube feeds. Bennett's life expectancy is dependent on his weight gain. He cannot afford weight loss and we don't have the luxury of waiting to see what his body does. So, we stopped home weaning.

I had really hoped that Bennett's own natural system would have eventually stepped in and taken over his need to eat.  So many times I thought, "our bodies are made to keep from starving - won't he eventually be hungry enough to eat?"  I called up the CF Dietician one day asking for answers and sharing with her our decision to potentially go forward with the Baylor Feeding Clinic.  I remember asking her, "But, Stacey, won't someday he just decide to eat?  If not his hunger cycle, won't the mere social pressure to eat be enough?  Have you seen this happen with a child with Cystic Fibrosis?"  She replied to me, "If you're asking if I've ever seen a 7 year old child who has had a g-tube since birth just one day pick up a fork and eat a meal, the answer is no.  In fact, the older they get, the more socially adept they become in navigating these eating-in-public moments and not eating.  Your best opportunity to get him off the g-tube is under close medical supervision in an intensive program like Baylor."

Realizing home tube-weaning wasn't gonna happen, we went forward with our plan to try Baylor - the only place near us that we felt could help - the only place where we could be under intense medical supervision while we cut back his tube feedings drastically without fearing his health would be compromised - the only place I knew near us who had a child psychologist on staff to help make sure Bennett's emotional well being was intact through the process.
The most wonderful thing is Baylor seemed to work - and quickly. They gave us hope, they provided us with direction and they gave us confidence that weaning is possible.

I won't defend Baylor. I'm quite confident Baylor can do that on their own. If someone wants to get into a debate between a behavioral modficiation program versus a child-centered feeding program, there are many other people to talk to. Debating and defending is not my job. My only job is give Bennett the best care I can. And honestly, despite it's faults (such as being somewhat impractical outside of a hospital setting), I believe it's the best care for Bennett.  And, thankfully, I have been very happy with the results.

Are there other models that would work for Bennett? Maybe. But even if a better place was in LA or Chicago, I believe Baylor was the place for us.  It offered us a wonderful program with a confident staff that allowed us to both care for Bennett while also being close enough to home to care for all members of our family.

Even if I found a better program now, we have come too far to quit yet. We have invested too many resources and time to not give the program due opportunity to work. I want our family to do it the way we are supposed to and give it a fair chance. If it doesn't work then, I'll be the first to voice this.

Here are two reasons why I find the behavioral feeding model appealing for Bennett:
1.) Bennett does not have a normal hunger and satiation cycle and this protocol teaches him one.
2.) For Bennett, food will likely always be experience as "medicine." Due to his high caloric needs and his less than normal desire to eat, food will likely always be seen as something he must do to keep him healthy, not always something he does just because he enjoys it. (I wish this wasn't the situation but it is.)  This model helps him learn this. 

But I am not married to his approach. I am happy to try something else. In fact, should it not work, I will try something else. The only thing I am committed to is helping Bennett thrive in whatever ways he can. Whether it be through this method or another method, I will continue to work until we help Bennett get as far along in the eating process as possible.

I believe my main job as a parent is to protect and teach. If this is the case, as I believe it is, it is my desire to protect my child's residual eating skills and teach him to use them as best as possible in order to help him grow as strong as possible against a silent disease that is slowly killing him.

Some people may view what we are doing with Bennett as coercion or force feeding. But there is never force involved. We have set up very clear boundaries with Bennett. Food is important for his life and we will take it that seriously. We give him clear expectations and directions to eat. However, the choice to eat is own. If he wants to sit in his seat for 25 minutes and not eat, that is fine. There is certainly no reason for him to cry or scream, something stressful for everyone involved. Instead, we are happy to wait until he wants to eat. And usually, he does.

We use speech therapy sessions to allow him to play naturally with food and try new foods on his own. He can touch the foods, try them or show us he doesn't like them. It is here that we determine whether or not a food would be good to put on his menu. Clearly, if he doesn't like it (or doesn't know how to properly eat it), we don't give it to him. Eating should be enjoyable and probable by the time we get to a structured feeding.

This feeding model is not for everyone.  It's incredibly time intensive and is absolutely disruptive to our life before we began it.  But this sacriface, for all of it's efforts, is worth it.  I wouldn't keep doing this if it wasn't.  Watching Bennett down potato chips today or baked beans on the 4th of July tells me that what I am doing is working.  But I'm not going to say that what works for Bennett works for everyone.  In fact, I believe the opposite may very well be true...which is why, while I appreciate sharing what we are doing, I am, in no way, trying to teach others how to do it.   Feeding disorders are too complicated.  I'd rather leave that up to the experts who treat the child.

Due to Bennett's illness and risk of death, we intervened, at a very early age, his bodies' natural ability to learn to eat.  So, through the feeding protocol, we are retraining his body to eat correctly - by helping him develop better oral/motor skills, by helping his jaw sustain eating for 25 minutes at a time, by giving him a better relationship with food through offering things he enjoys during eating and by helping Bennett see that while we want him to enjoy eating, ultimately, he must chose to eat because it is important for his survival. 

Am I doing the best thing for my son? I believe so. But if I'm not, it's not for lack of trying. And if this doesn't work, you better believe, I'll try something else.  I won't quit here.  My son is worth fighting for.


  1. breck, we've written off-blog (is that even a word?), but i wanted to say publicly: THANK YOU.

    i think we both have made discoveries, and that is a true gift.

    my best to your boys, and here's to summer, and chips, and to bennett's discoveries in this new land of food -- there are so many to be made!

  2. Ha ha, after reading this I admit that I had to scroll back and be nosy and go through your comment sections!

    I'm glad Bennett is doing well!! That is the important thing.

  3. Wow B, you have probably just changed my thinking for life.

    "In fact, the older they get, the more socially adept they become in navigating these eating-in-public moments and not eating."
    So true B. I once had a dietician tell me, "He will eat more when he goes to school and sees all his friends eating around him." Umm .. nope! Because of how little he eats on his own, his "lunch" is a meerly just a small snack. So, that is totally true, as I've seen it first hand over and over again. He has learned how to fit in with other people and eat very small amounts, so that it looks like he's eating normally, but he just isn't.

    For Bennett, food will likely always be experience as "medicine." Due to his high caloric needs and his less than normal desire to eat, food will likely always be seen as something he must do to keep him healthy, not always something he does just because he enjoys it. (I wish this wasn't the situation but it is.) This model helps him learn this.

    This kinda hurts. Knowing that eating will possibly always be like a "treatment". Even though Azer has foods that he enjoys the taste of, he has told me several times that he does not enjoy the act of eating.

    Thank you so much for that study you found. It's so easy for me to sit down and (yes, I know it's wrong) blame him for not eating more than a few bites, or feeling stressed because it took him 30 minutes to eat a hotdog. It's not his fault, and it will never be his fault.

    Thank you for changing my brain lol! I know God had me find your blog for a reason.

  4. You are doing an amazing job, Breck!


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