Hooray for Heath, his mom, and inspiring tube weaning success!

Mighty Heath

Meet Heath. Ain't he sweet?

Remember Zander? Well he’s got company. (The tube-free ranks are growing.)

Sadly, I kept putting off this post because the hugeness of the triumph deserves a truly well written, heartfelt description. Which takes time and energy that I’ve been lacking, though I’ve so wanted to muster it! But then I realized that I can’t tell the story any better than Jenny, Heath’s mom, an incredible writer and an amazingly intelligent and unstoppable mother. So I’m just going to give you the highlights and point you toward the blog that documents Heath’s journey: The Crunchy and the Smooth.

Heath is 15 months old and was 100% tube fed until a couple weeks ago. The need for his g-tube (gastrostomy button) was prompted by his difficult birth and the immediate, medically intense aftermath. The fly-by overview, in Jenny’s words: “cord wrapped tight around his neck, Apgars of 0, ambulance transport from a country mouse hospital to a city mouse NICU, diagnosis: hypoxic brain injury.” As the result of many necessary and lifesaving but overwhelming and traumatizing medical procedures that took place in the area of his nose and mouth (mainly intubation and suctioning), Heath developed Posttraumatic Feeding Syndrome. Until recently, to defend himself from further invasions, he batted away any food presented to him. He was scared, and who could blame him? The answer, his parents realized, was to build trust, apply no pressure, and to let him feel hunger and interact with food on his own terms (play picnics, for example).

I want to pause here and clarify, because “brain injury” is vague and doesn’t paint an accurate picture of Heath. While motor areas of Heath’s brain suffered injury during his birth, Jenny explained to me that his brain is repairing itself thanks to the amazing processes enabled by infant neuroplasticity. The ongoing repairs are evident, as I’ve noticed leaps in his development in the short time I’ve known Heath.  Anyone who lays eyes on him can see that he is thriving in every way. He  is one of the happiest, sweetest, most engaged and engaging babies I’ve ever met. He’s got a sense of humor. He communicates and makes friends easily. His weight is great. He’s meeting developmental milestones a little later than most, but he’s getting there–at his own happy pace (just like all babies, really). Of course, his mother has sought out various ways to support him in his physical development, including occupational therapy, movement sessions and even yoga–and he’s way better than me, seriously.

After much research, various forms of therapy, eye-opening revelations, and inspiration from the Graz model, an intensive wean was planned. The journey began on May 9th, with hands-on support from Dr. Markus Wilken, a psychologist with specialized expertise on feeding adversity. He came to the U.S. to help wean Heath as well as two other tube-fed children, who began eating faster than anyone expected! (You can read about Kai and Rosie’s simultaneous weaning successes at The Crunchy and the Smooth, as well.) Over his career, Wilken has helped wean more than 400 children from their feeding tubes.  He leads the tube weaning program at Princess Margaret Hospital in Darmstadt, Germany and together with Martina Jotzo runs The Institute for Psychology and Psychosomatics of Early Childhood.

Jenny’s blog has all the weaning specifics, but I’ll say that it’s been quite a ride (as in nauseating ups and downs) for Heath and his parents, as most weans are. But, with no doubt, the weaning effort has been successful. The progress Heath has made is staggering. In short, and I am in complete awe though I never doubted he could do it, Heath has become an EATER. He is enjoying a diverse array of foods, with more and more being added to the menu each day. I’m smiling because Heath’s life is forever changed. And because any parent of a tube-fed child who reads this will experience the sensation of their heart doing a back flip within their chest. Brave Heath is going to help so many babies and kids escape from the limitations, pain and decreased quality of life (for the whole family) that comes from extended tube feeding–not just the physical and psychological effects of the tube itself but from the anxiety and helplessness of tube feeding with no end in sight, when your child has (often after much hard work, therapy, recovery) the ability but not the willingness to eat. The parents who stare into a proverbial black hole whenever they ask doctors or wonder to themselves about whether their child will ever be able to eat–they will discover hope in Heath.

To say that Heath’s mom deserves credit is such a vast understatement. The roller coaster ride she (and her wonderful husband) have been on since his birth, when Heath literally had to be brought back to life and the 35 terrifying days in the NICU that followed, is a testament to not only her strength, but her inestimable love and grace. I know why Heath smiles so much.

Practically speaking, this very smart woman is an accomplished journalist. You can tell by the quality of her writing–and the research and outreach to experts across the globe that she executed in her quest to empower Heath with the gift of autonomy and the joy of eating. So, parents of tube-fed children, please check out her Resources Page to hit the jackpot in terms of insights and data and all kinds of valuable, rare informational gems on the topics of tube weaning, tube feeding and associated trauma.

To everyone reading this… I hope you’ll go to The Crunchy and the Smooth and post a few cheerful and supportive words in the comments section. Heath has come a long, long way, but there is still patience and perseverance required by this family as they follow Heath’s lead and adjust to a whole new paradigm.

To Heath, Jenny and the man known as “Peanut”…  big love, loud applause and quiet, awestruck respect from me, Stella and Cody. Enjoy every lick, bite and gulp! (We know you will.)

Meet fearless Frankie and her parents

Update: In March of 2010, her parents announced that Frankie discovered the joy of eating and left tube-feeding behind for good!

I’d like to introduce you to Francesca and her devoted parents.  Their extremely touching and wonderfully written blog, Frankly Frankie, documents Francesca’s struggles with eating. They need our morale support–right now.

Adorable two-year-old Francesca, or Frankie, has a story that begins very similarly to Stella’s: severe reflux (GERD) and cow’s milk protein intolerance, signaled by bloody diapers, led her to refuse to eat as a newborn. Frankie’s mom, Brett, eliminated dairy from her diet to no avail (sounds familiar). As with Stella, a reluctant switch to amino-acid-based formula and bottle feeding was made. But Frankie was unfamiliar with the bottle, the very expensive formula caused terrible constipation (not to mention its horrible taste), and she soon shut down orally, with near-total refusal to eat. Diagnosed with Failure To Thrive (FTT), she descended through the ranks of the growth chart until she fell off, despite valiant daily efforts to feed her “normally.” A g-tube (PEG) was surgically inserted into Francesca’s stomach in order to prevent severe malnutrition. Francesca remained off the growth charts until very recently, a truly hard-earned achievement for her parents, a milestone that prompted celebration.

She is now two years old and has been 100% tube-fed. (For the full story, click here.) But not for long. Frankie’s parents very recently embarked on an intensive and heroic weaning effort. What touches me so much about their story and current efforts isn’t, as you might expect, that Stella could easily have wound up in the same exact situation. What gets me is the absolute dedication and above-and-beyond efforts of Frankie’s parents. They are doing everything humanly possible to help Frankie discover the joy of eating. They have turned their home into a play picnic, a highly successful and messy therapeutic Graz method used during weaning that allows tube-fed kids to explore and play with food without pressure, on their own terms, and become comfortable enough with food to eat. The floors and walls in Frankie’s home are sticky.

A few days into the weaning process, Frankie’s parents are trying hard to keep the faith, as Francesca still prefers ice cubes over the many treats offered, including (hold on to your hats):

“oatmeal with soy milk and brown sugar, dried cranberries, pita chips, cherrios, sharp cheddar cheese, bread with seeds, coconut rice, apple sauce, carrots shaped like coins, vegetable and goat cheese frittata, whole wheat spaghetti noodles, steamed broccoli, carrots shaped like flowers, potato chips, medium cheddar cheese, slices of banana, cinnamon rolls, acorn squash, swiss chard, butternut squash, sour cream, rice krispies, puffs, bacon, scrambled eggs with cheese in a tortilla, spinach, red bell pepper slices, coconut flakes, frosted animal cookies, miniature strawberry yogurt covered pretzels, dried mango-pineapple, dried banana, egg noodles with green onion, salt and pepper, salad greens, baked potato chips, polish sausage, red cabbage, mini marshmallows, dried apples, chocolate yogurt covered pretzels, dried apricots, corn chips, dried cherries, croissant, peaches, banana bread, colby jack cheese, graham cracker cookies shaped like bugs, french bread, fresh mango, cookie bars, pear slices, candy corn, gummy bears, lettuce, chocolate frosting, gingerbread cookies, white frosting, salt and pepper potato chips, chocolate, quinoa, garlic bread, french toast, popcorn with butter, pink pixie popcorn, yogurt, celery with cream cheese and raisins, wheat thin crackers, apple slices, turkey soup with dumplings, uncooked pasta wheels, yellow raisins, brown raisins, fruit loop cereal, orange cinnamon rolls, parmesan cheese, tortillas, dried mango, tortilla chips, grated cheese, beef chili, pancakes with butter and maple syrup, chocolate cookies shaped like bears, jelly beans, deviled eggs, toast with raspberry jam, carrots with ranch dressing…”

Francesca is undergoing huge psychological and biological changes, and needs time to adjust. As such, with this type of weaning, there is a lot of anxious waiting and hoping, and often, a good measure of sheer desperation. (Hek, I threw bottles.) The outcome rests squarely in the hands of the child. As a parent, you feel helpless. Your role? To make food available (really, without even “offering” it), to remain calm, and have faith in a child who has rarely if ever shown any interest in eating.

Tube weaning is extremely stressful, even when it is going well. It’s an incredible leap of faith, and a very lonely journey. Please take a moment to visit the blog, Frankly Frankie, and send your warm, supportive wishes in comment form.

I’ll sign off by simply stating that I have absolute faith in Frankie, and her parents.

Support and community for parents of tube-fed children

Trying to wean your child off of a tube? Bravo! You’ll find comfort, resources, and encouragement in this online support group:

Tube Fed Children Deserve to Eat

It’s a social network powered by Ning Grouply, with the purpose of “Connecting Parents of Children with Tube Feeding Issues.”  There you will find a wealth of information and wonderful people who are all going through (or have been through) your stressful situation!

Best of luck to you!

Behold: Tube weaning research and guidelines

Invigorated by our walk

Back in her tube days.

When is the last time a research paper made you cry? Around the time of Stella’s wean, and since then, I’ve come across information that moved me on many levels. I’d like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.”

Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

Update: Also, from Spectrum Pediatrics in Virginia, check out this pediatric feeding tube weaning case study! This case study breaks down exactly how a well-managed and supported wean takes place.

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

This is now.

Lean but healthy, and happily eating, just months later.

These resources seemed to illuminate our world, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing. It’s so helpful to understand how calories are reduced and what a respectful, child-centered wean looks like.

Why are these papers such a big deal? Because so little research on tube weaning exists, and therefore most parents and doctors are really just “winging it.” Yes, some children require tubes for long-term survival and the authors of these papers fully acknowledge this, of course. But many children who are capable of eating on their own, whose core feeding or other issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life and impairs development. There’s a better way, and we need to spread the word.

Children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. Children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

In Spectrum Pediatrics’ detailed case study, you’ll see many references to honoring and respecting the child and being attentive to the child’s cues. The goal is to allow hunger while minimizing stress, and to create a situation wherein the child chooses to become an eater by mouth:

“The team members utilized intuition and developmental knowledge in order to read the “cues” of the patient to know what the child wanted to eat, as well as with whom and where. All of the eating scenarios were very relaxed and focused on fun and play. The tube weaning program team members were cognizant of ensuring an eating environment that was comfortable and low-anxiety. If the child was ever afraid to eat, the therapists and parents would return to enjoyable play activities. He was able to cope with his post-traumatic feeding disorder and its negative effects through play in the low-stress, enjoyable environment.”

“The patient continued to exhibit changes in his hunger and sleep cycle on the third and fourth day of the tube weaning program. He had difficulties with sleeping based on his new sensations with hunger and self-regulation. The team continued to make the eating situation as comfortable as possible for the patient by “following his lead”. This led to feedings of his most desired foods and in a variety of locations, including outdoors, indoors, on the floor, in the bathtub and in the car. The team also continued to provide water-dense foods, such as melon and cantaloupe, in order to ensure that he was keeping well hydrated. It was evident that he was growing in his familiarity with new sensations, foods, and oral motor skills.”

I hope these resources are as helpful to you as they were to me! Best weaning wishes.

Tube-free Stella: Day 2

Can’t sleep so I thought I’d write a quick update. Weaning seems to be going well. Stella is happy and eating pretty often. As is expected over the course of her complete transition from the tube to the bottle, her volume will increase over time. I am struggling to let go of my obsession with counting every milliliter she takes, despite strong encouragement from several camps to do so. While I’m still working on that, I am successfully ignoring the clock, so that’s a good step. My job is to watch for Stella’s hunger cues and feed her when she wants to eat. And I’m embracing this role! She is in charge of her intake, as she should be.

I consider it a great sign that on several occasions, she’ll whine due to hunger. Then I’ll show her the bottle, and she’ll stop whining and even smile. If I put the bottle out of sight, the whining begins again. The girl totally gets that food is good stuff. She is coming around.

Today, I learned the secret to rolling success for Stella: let her be naked for a while after a diaper change. As soon as the clothes come off, the rolling begins. It’s amazing! She has completely mastered back-to-belly rolling but is still working on belly-to-back rolling. She is close–just figuring out what to do with her arms (as am I half the time). Adding a touch of suspense is the ever-present possibility that she could poop or pee all over the place at any moment. Cody and I find this all incredibly entertaining. Who needs TV when you’ve got Stella?

I talked to Stella’s occupational therapist on the phone today and it was very affirming! Based on my account of Stella’s first day and a half without the tube, she confirmed my feeling that things were going well and addressed the minor worries and questions that lingered in my mind. Tomorrow, we’ll see Dr. Devorah for another session of Cranial Osteopathy. On Friday, we’ll visit her pediatrician. Other than that, we’re taking our walks, rolling around, reading books, listening to music, playing and enjoying our days free from the hassles, worries and snag-potential of the tube!

Speaking of our walks, I had the growing suspicion that Stella was becoming “The Tube Baby of Wallingford,” an adorable but medicalized mascot for this Seattle neighborhood. We enjoy a stroll or two every day, with Stella facing out in the Baby Bjorn and taking in the world around her, and along the way we see a lot of the same neighbors, clerks, walkers, joggers and baristas. Many seem taken with Stella and I had the feeling that she received some extra looks from some curious people because of the tube. It felt so good to visit our usual shops and see that people share in our excitement about the tube being gone.

We remain very optimistic. Focused on the mission at hand, but having fun, too. 

Thanks for following her progress. It means a lot to us. Stay tuned.

The stubborn determination of hope

Good news. Stella is back to taking in about half of her daily calories from the bottle, just as she did before the recent regression.

However.

My feeling is that the tube is preventing her from recovering completely. I believe that it exacerbates her reflux and makes swallowing more difficult. I found and paid for two medical research papers that support my beliefs. I hope that she proves me wrong, and soon, but I am unconvinced that our current mode of treatment will enable Stella to return to 100% normal bottle feeding. I am ready to take urgent action. I am questioning the medical establishment and ready to try something else.

I learned about and have been in touch with a renowned feeding clinic in Austria. Their cold-turkey approach to tube weaning is radically different that what is practiced here in the states. They believe that the baby or child must drive their own intake, rather than the tube. They share my belief that tubes, over time, worsen aversions and lead to tube dependency. They have studied the topic for over 15 years and have a success rate of 92-95%, depending on the age group. The doctor who runs the feeding clinic told me that Stella’s age is ideal for weaning and that we may be able to achieve it through email coaching, rather than having to go all the way to Austria–although I am eager and willing to go to Pluto if that’s what it takes.

The drawback to this method, what is called the “Graz” approach, is simple. The babies and children treated may not gain weight for a month or two. I believe that Stella would be on the shorter of those timeframes, since she already takes half of her formula orally and the clinic treats many children who are 100% tube fed. Stella will be hungry and not fed until she asks for food. This may seem harsh to some, but I believe it makes sense. I believe that Stella, if able to have more control over her eating and freed from the discomfort and difficulties of the tube, would respond very well. But she would need some time to pull through once the tube is removed. Most doctors here are not willing to let a baby have low or no weight gain for any period of time, so the tube stays in. They, of course, have the babies’ best interests in mind, but they seem beholden to the tube and unaware of, or too willing to overlook, its detrimental effects in the name of weight gain. I believe that any short term weight gain delay would be more than made up for with the restoration of a healthy relationship with food and the resulting appropriate, baby-driven weight gain that would follow.

Stella’s life was never in danger. The tube was placed for therapeutic purposes, not just to help her gain weight. The tube was helpful in allowing Stella to say “no” and be heard, instead of constantly being force-fed, which must’ve been very traumatic for her. The tube took the fight away from eating. The tube has enabled her to make progress. But I believe that we have reached a point at which the tube’s negatives outweigh the positives. And I am ready to take bold action in the face of a lot of opposition in order to do what I believe is best for her.

Cody and I are going to consult with her occupational therapist and pediatrician on this. We will continue to bring Stella to a cranial osteopath. We are going to do some research into the Graz method and the Austrian clinic. And then we are going to decide how to proceed. Of course, in the meantime, we would love to see Stella down bottles left and right, thereby eliminating the need for tough decisions or new approaches.

Even on gut-wrenching days when Stella resists the bottle like it’s full of toxic waste, there is an incredibly wishful part of me that looks to the next bottle as a possible turning point. There is a clump of raw hope that sits smoldering in my chest like an ember in the darkness. It’s always there. And it’s going to light the way to a tube-free Stella.