These tube weaning journeys are just a few of many! There are many inspiring weaning stories out there, encompassing a diverse set of babies and children. I add to the list whenever possible (check the bottom of the page for new additions). The weans shared below were, largely but not strictly, centered on principles of the Graz model, with hunger (reduction of feeds over the course of a up to a couple weeks, depending on the child) and autonomy as core principles, with a maximum of 10% weight loss allowed during weaning, and supplemental feeds/hydration provided as needed, based on each child’s individual needs, temperaments, and responses to the new sensation of hunger.
Stella: Tube-fed from two months to four months of age due to reflux, cow’s milk protein intolerance or allergy to my breastmilk, eating refusal, lack of growth. She progressed to taking in 40-50% of her formula orally before the tube was removed for successful weaning. Compared to other stories shared below, Stella was tube fed for a very short period of time: two months. The thing is, there are lots of babies like Stella out there and I hope that her story can inspire some earlier weans–in cases where initial problems like allergies and intolerances and reflux have been addressed but eating refusal remains. To check out Stella’s road to Tube-Free Land, click here.
Zander: 100% tube-fed for 14 months due to “worst case of frank aspiration Seattle Children’s Hospital has ever seen” (according to a doctor there). Then progressed slowly from 0% to 50% oral intake over the next few months, then tube feeds were ceased and he embraced eating . Went from an NG, to a J-G, to a G tube. His mother is a dear friend of mine, so I couldn’t resist writing up a congratulatory overview of Zander’s tube feeding and weaning journey here on this blog.
Heath: 100% tube-fed until 15 months of age due to injury sustained during a tumultuous birth: “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.” Get his full tube weaning success story at The Crunchy and the Smooth, a wonderful blog written by his mother.
Frankie: 100% tube-fed until 2 years of age due to severe GERD, cow’s milk protein intolerance, eating refusal, Failure To Thrive diagnosis (FTT). She is now a happy eater who participates in swimming, soccer and gymnastics, and she is cognitively advanced for her age! The moving story of Francesca’s triumphant tube wean is documented at Frankly Frankie, a must-read!
Diego: Tube fed from birth (close to 100% before weaning). Born prematurely at 28 5/7 weeks gestation, and was in the hospital for three months. He was weaned a couple months later. Having been in email contact with his devoted mother, Rocio, I wrote up a synopsis of Diego’s successful weaning experience.
Layla: Born at 24 weeks gestation and weighing just 590 grams, Layla spent nine months in the hospital and was 100% tube fed for almost three years (via NG tube for her first 18 months, then through a G-tube). At the tube weaning clinic in Graz, Austria, Layla began to eat normally just four days after tube feedings were ceased. Read her truly inspiring story, “Layla’s New Hunger for Life,” as covered by community newspaper Whitehorse Leader.
Logan: Born at 31 weeks gestation with many rough weeks following his birth, was tube fed until he was three years and seven months old. Though his parents had been told to plan for how he’d be tube-fed when he attended school (weaning never mentioned or considered by the medical experts responsible for his care), his parents proactively sought weaning help from Graz and also found a supportive local doctor. Logan’s wean went amazingly well despite illnesses along the way and a weight plateau. After four months, he was steadily gaining weight and often ate more at dinner than his brother. Logan is now five, loves to eat, and recently asked his parents if he could work at McDonald’s when he grows up. Click here to read Logan’s tube weaning success story in full, as shared by his mother in the “Tube Fed Kids Deserve to Eat” online support network.
Tova: Here’s the summary from the blog that shares a thorough account of Tova’s tube weaning journey: “Born at 24 weeks. Tova spent her first 5 and a half months in hospital. Of those, 4 and a half were spent in intensive care and one month in special care. Because of all the tubes and trauma of being in ICU, Tova developed an oral aversion and refused to eat. She was fed by a NasoGastric tube for the first year or so of her life, followed by a PEG tube inserted directly into her stomach. Tova had never eaten with her mouth until we visited a weaning program in Graz, Austria during January 2010! After 4 weeks in their program we gained a 100% oral feeding baby!”