Briannas Story

Mel - posted on 05/30/2011 ( 16 moms have responded )




Some of you have asked questions about my daughter in the past and so someone on here suggested to me that I put up a post with her story, to make it easier for you to understand. I have copied her story from my computer and also copied and pasted some information sent to me by her Pediatrician Doctor Ian Everett. This is just to give people a better understand of her situation and hopefully giving me a little more credit, that I may not be able to express myself as well as I should but that I am completely honest in my daughters situation.: (edited to add this is long because all the reffereances are at the bottom)

When I was 18 I fell pregnant with my first baby girl, the pregnancy all went well apart from being small for dates. I was sent for a 36 week ultrasound to check that everything was okay.

On the 8th of April 2008, a week before I was due, we welcomed Brianna Mikayla Heath into the world. It was a natural birth with no problems and she was completely healthy. Over the next seven days I was made to stay in hospital because she had dropped more than ten percent body weight. She was also awake all night every night feeding. I was keeping her in bed with me and had her attached all night so was extremely sore. When I was allowed home she was a week old and at three weeks my child health nurse finally discovered her tongue tie. She had been hungry the whole time from not being able to breast feed properly and her child health nurse had said she would need formula because of her weight. She gained 90 grams overnight and after a few nights of waking her three hourly for feeding we were told she would be okay.

Over the next three weeks it became increasingly harder to feed her because she was upset, pulling away and basically having to be force fed. I thought that it was something to do with the formula and that I had caused it by not breast feeding. We went to four different doctors and were told she had colic and that some babies were fussy, until eventually we took her to the emergency department at Princess Margaret Hospital when she was about six weeks old. It had gotten to the point where she was taking about 10 mills every six hours if that and we were desperate for something to be done. She was only gaining about 10 grams a week.

After being seen by the nurses they put a drip in her hand and sent her to be admitted at Fremantle Hospital to have some tests done. Brianna also wasn’t holding down any of her feeds. Damian and I were told that it was either an allergy or she had reflux but either way it would go away within a short amount of time. Some nurses told us that 90% of babies in the children’s ward were there because of reflux and she had all the symptoms.

Over four weeks later she still had insufficient weight gain, had a nasal gastric tube for feeding put down her nose and I was being woken three hourly all day and night with her feeds taking one hour each. She was bruising my arm by digging herself into me to try and refuse her bottle. Every time she had the tube put in she would scream and choke, but at least I knew that when she didn’t take her bottle I could put it straight into her stomach while she slept.

When she was discharged we decided to get her tongue tie cut in case it had contributed to her feeding difficulties which was a simple and easy procedure(she was discharged for 2 days but back in because she lost 100 grams). Brianna was booked in for an endoscopy which meant putting a camera down her throat to see if she did have reflux. She had to fast from 4am and by the time she got into theatre around lunchtime she was very hungry and she was inconsolable. The doctors took her off me to put her under with the gas and I just wanted them to get it done as quickly as possible so she was peaceful instead of not understanding why I wasn’t feeding her.

We had a short wait of about 30 minutes and I went to see her as soon as she had woken up. Her eyes were swollen a little from the annasetic and she had two tubes in her nose and a machine attached to her back by velcro and a cord. There was also a canula in her foot. The second tube was in for 3 days in case she had any problems after theatre and the machine was another guide to try and check for reflux. She was extremely fussy and we were there for 13 hours before they decided to keep her in overnight for observation. She was throwing up all her feeds and very irritated, and holding her and the machine and getting her in and out of her car seat for the next few days was difficult. She was waking up choking because of the two tubes and when the test results showed she didn’t have reflux we felt like she had, had this procedure done unnecessarily.

Over the next few months we did all her tube feeds at home but were constantly making overnight trips to the hospital when there were problems with her tube. During the day she had gone up to 15 and a half hours without a feed. Even though she didn’t demand her feeds and was still happy I was worried about her dehydrating since the tube was our only way of feeding her. When she was about 6 months they showed us how to put her tubes in and gave us all the equipment to test the positioning. They had some nurses who were pretty bad at putting them in and made her bleed because they had got it in the wrong spot constantly so we didn’t have a lot of faith in them anyhow.

At four months old Brianna went in for a Co-ordination Swallow which was a video x-ray. We finally had an answer when it showed that she had been aspirating 25 percent of all liquids into her lungs. We had been force feeding her a bottle since she was born, and putting her though so much pain, but at least her problems were simple and would go away.

The speech pathologist put Brianna on solids to help with weight gain around 3.5 months of age and gave us a thickener to put in her bottle. She spat out all her solids, not knowing how to swallow them and was given rusk with peanut paste, cream cheese, or butter for calories, which she did suck the spreads off but didn’t chew them. The thickener made it so that she wouldn’t aspirate the milk the problem was she was too scared of a bottle to drink from it and when given a cup she just spat everything out.

Over the next four months Brianna was on concentrated formula but still losing her feeds, losing weight and refusing to spoon feed. Her development was still very far behind and she went under again for an MRI of her brain. She had already had a procedure done using the soft spot on her head to try and see if there were any abnormalities but they were unsuccessful. This time the fasting wasn’t a problem for her, her canula came out almost as soon as she woke up and she had no reactions. We were so happy to get all clear results – our daughter had no long term problems.

She had further urine and blood tests after suspicions of a muscle weakness and chest and stomach x-rays after she was sick from problems with her tube. She also underwent another co-ordination swallow at seven months and then again at 10 months. Unfortunately she still didn’t know how to swallow but we were given the all clear to feed her with very little thickener in her bottles. She was offered a bottle once a day. AT 10 months we were able to stop the night feeds to try and get her hungry by morning so her last tube feed was at 8pm (with each feed taking about 1 hr 45 minutes).

At 11 months, and 14 months she was admitted to hospital for a period of a week with attempts to get her eating so she could get the tube out but each were unsuccessful (she was starved and only allowed to drink water , when she had no swallowing skills to be able to eat food), and we knew they would be. She was always full from the constant nasal gastric feeds and therefore never got the chance to get hungry and practise her eating and drinking skills. Each time she was rehydrated with 500 mill of gatoraid over 5 hours then discharged with a tube. She was put on continuous night feeds at 14 months running over 10 hours while she slept which gave her 500 mills of pediasure which is a high calorie formula. Her day feeds of pediasure were still being given at 8, 12 and 4pm and she was eating little to no solids due to her total formula amount being 1190 mills, and pediasure is double the calories of cows milk. By the time she was 14 months she’d also just started to crawl, and learnt to sit by herself just before her first birthday so she was meeting her milestones she was just behind with them (sitting in a high chair or pram for 6 hours a day for feeds to go through and then being told to sit for 30 minutes aftef feeds as well to avoid vomitting didnt help, so I started syringing her feeds through while she was crawling around). She saw a dietician, physiotherapist, speech pathologist, two paediatricians, her child health nurse and occupational therapist on a weekly basis, but it just wasn’t getting her anywhere. Starving her with no tube for 48 hours did not work, they tried this at hospital and she just became fussy, tired and clingy and I was demanding the tube be put in, to be forced to wait for the doctors to do their rounds in the evening. Her speech pathologists wanted to reduce tube feeds to get her hungry and her dietician wouldn’t reduce tube feeds until she was eating a substantial amount so it was a losing battle.

After this I decided I had to do my own research and I found there was a whole website and articles written on tube dependant babies, and how to treat and prevent the illness. I had thought Brianna was abnormal but it turned out she actually was in the same situation as other tube fed kids all over Australia, one in Perth and around the world.(aspiration wasn;t overly common however a lot of other babies had birth defects, reflux, FTT or other reasons for their tubes). I was surprised to read the hospital had been going about it all wrong, and more surprised to read that babies can take less then a week to end up tube dependant, that they throw up feeds on a daily basis, and develop a strong gag reflex and oral aversions. I read other mum’s stories to find out that their babies were also underweight, and being constantly fed and not being given the chance to eat and drink orally because they were always full. I then found the tube weaning clinic in Austria. I talked to many members from the site which was titled “Tube Fed Kids – Deserve To Eat”, and found out some of them had travelled to Austria to wean their kids because no one in Australia seemed to understand or know how to go about it, and that some had even weaned their kids by email from the Austrian Doctors.

I found out the clinic have a 96% success rate and they do their “net coaching” program in 3 weeks so the baby does not get used to a reduced amount of milk. The key to Graz working was to get the baby drinking enough to be able to maintain thier weight, eating could come later even months later, as long as they were drinking high calorie fluids. We presented all our information to Brianna’s Pediatrcian who agreed to use Graz methods to attempt another tube wean (take out 30% of each tube feed per day until tube is removed and they are left to eat or starve to get hungry enough to try to eat). This weaning attempt was done at 16 months. Day 3 her tube was removed and she got to 8 days tube free! This was the first time she was sent home without a tube and next day had to come for a checkup (her ped took 2 weeks unpaid leave from PMH to take care of Brianna at freo. She was dehydrated and the tube was put back in. She had to be rehydrated again I was beyond devastated I was absoltutely broken to have to see her have a tube put down her nose again. We had worked our asses off all week in hospital, milkshakes every day hubby was going to mcdonalds to get meals there every day for her they were letting us use thier staff fridge for all the junk food they dont keep in the hosptals she had calorie powder in all her drinks and foods pediasure mixed with milk to get her to drink it, cakes lolly pops, every kind of food and we made it losing almost one kilo of weight in the whole week but we made it for 8 days without her getting dehydrated.

We told them, Austria only fail in 4% of cases why did you fail, we think you guys need to take the tube out again and we'll keep going she's just learned to start eating and drinking (believe me the first 2 days without the tube were hell for her starving thirsty not knowing why shes hungry or how to eat or connecting food to being full, also no water is allowed because its empty calories so she was sucking the water out of a paint brush in the toy room and sucking the water out the flannel in the bath). Her ped was less then helpful and said we were not trying again until she was over 2 yrs old. We didnt want her to fall behind again in eating, the professor at Graz had told me not to wait longer because the older they get the harder it is to teach them to eat, and I had, had a 2 hour long conversation with a lady in Tasmania who went to Melbournes children hospital then to Austria to wean her boy.

We paid the $2000AUS to the doctors in Austria for the net coaching program when Brianna was 18 months old. We definitely couldn’t afford the 37k for treatment over there and felt Brianna was almost there with her weaning. The fees have now gone up because of the amount of patients they have and I have been to see another child in Perth who is currently being weaned from home using the same program. Brianna’s paediatrician would not allow us to do the program from home without the support of the feeding team in my area, who were not able to see us as much as needed, so we put an article in the paper to try and find a paediatrician and get some publicity for her. After making calls to legal places, DCP (who told us it would be considered neglect to wean our child from home),our local GP, and putting her story in the paper to try and find a ped who would take her on, we decided with our friends and family that it would be best to wean her from home without Australia doctors consent. We had been told by the professor that the longer you wait to wean the harder it is to teach the child to eat and to get their body used to living on a diet without abnormally high calories, and still maintaining their weight.

We cancelled her day care for that week, cancelled all appointments and kept her home so no one could know what we were doing, we checked her weight every day and with a Mcdonalds shake 3 times a day a hash brown every morning, pasta with cheese butter and calorie powder plus pediasure , cows milk , fruit with calorie powder on it, cream and ice cream, we managed to stabilize her weight. She didn’t lose more than about 400 grams, (Graz stop if weight loss is more then 10% body weight which meant a 1000 grams for her). She had to eat where ever she wanted have food available all day and drinks in several different cups but we made it. We wanted to make sure there was no going back so we kept it from everyone for about 4-6 weeks I think I told health professionals she had just pulled her tube out that day. We eventually told the feeding team who had to inform her ped under their legal obligations. He texted us at 11pm and said he wanted to see Brianna the next day we said we can’t, and were told he would have to report us if we didn’t come in. We met with him at Fremantle hospital about 6pm the following day. He was happy with her and said we did great and that he would check up again on her second birthday and we never heard from him again.

Brianna was weaned by reducing her formula feeds each day then removing the tube and within weeks she knew how to eat nearly every kind of food except apples and pears. She has been tube free since October 2009 and is now healthy (bar a few minor developmental problems, behind in grose motor, and still doesn’t know how to swallow her saliva). She started talking and walking when the tube was removed.

Tube Dependancy is not yet recognised as an actual illness around the world, and parents are not told of the dependency that a baby can develop after using nasal gastric tubes. Right now the only actual tube weaning clinic is in Austria, but many more people from Australia are going over seas to use the Austrian program.

This is a document sent to us for Brianna's tube weaning attempt that couldn't be done at home due to not having the support of the feeding team:

Nasogastric tube weaning for Brianna Heath

August 2009 Dr Ian Everitt

• The goal of the weaning process is to re-establish a full oral, self-regulated intake by Brianna.

• Timing of weaning to be decided by Brianna’s parents in conjunction with Rockingham Feeding Team so that close monitoring over the period can occur. A meeting between the Feeding Team and Brianna’s parents should occur prior to the weaning process to discuss the strategies for the process.The Feeding team need to be familiar with the Graz tube weaning protocol literature provided by Melissa Donnelly.

• The weaing process is to be a home-based program to be done under the supervision of Rockingham Feeding Team in the environment of Brianna’s parent’s home.


The Graz (Dr. Marguerite Dunitz-Scheer) tube weaning protocol (a three week program) reduces the tube fed volume by 20-40% on day one, 40-60% on day two and - depending on the child’s physical state and exploratory oral behavior - reduces the remaining 40-60% either completely on day three or gradually over the following days.

• During this period, Brianna must be exposed to a world of attractive food and drink, all served in small and colorful dishes during all therapeutic sessions offered by Melissa or Damian or member of the Feeding Team.

NB. Tube dependant children should never be given water, only milk or juice even watered down pediasure. They need to learn to only have drinks with calories. Cups/bottles/bowls of finger food should be left around the house at all times.

• During this time, Brianna will need to discover that eating is the solution to hunger.

• Brianna’s weight loss should not exceed 10% of the initial body weight. She will need to have daily weights performed. Weight loss is inevitable with tube weaning, but weight gain soon after is very possible using a high calorie diet.

• As soon as any oral activity is observed (babbling, sucking, licking, tasting), the nasogastric tube should be removed, at least during the day, or NG-tube feeding should be stopped during the day.

• Melissa and Damian must be able to have the child checked at any time if they have any concerns about insufficient intake or potential harm. – RKDH Dr Colin Derrick or FHHS Dr Ian Everitt

• A daily chart recording number of Brianna’s wet nappies should be kept to help to assess hydration status.

Brianna must be seen at least twice daily by the responsible feeding team.

• Such transition requires basic confidence of the caregivers and involved professionals that learning to eat can and will happen.

• An environment providing food in a relaxed and natural way is essential.

After the phase of individuation, any active offering of food by adults reduces autonomy and self-motivated food seeking by the child, especially if expectation, pressure, urge or even harassment is linked to the offering. Parental intrusiveness is never meant to harm or hinder the infant, but anxious-insecure attachment patterns increase the occurrence of fussiness and the tendency for refusal in the child. Parental sensitivity in reading their child’s cues is paramount. If the food comes too fast, it may provoke the impression of intrusiveness, leading to facial aversion and food avoidance. If the food comes too late, the infant will not make the link between cue and answer and will not learn its own role in the food-seeking and food-offering dialogue.

• Communication between Melissa and Damian and Brianna during the weaning phase is important and should be kept as smooth as possible.

Advice to parents should center on learning to wait until the child itself expresses its needs and wishes. Communication with infants and toddlers requires some additional rules: no offering of food without a cue from the baby; make food visible and have it available, but never take the first step. The infant's cues are divided into clear “yes” signals, clear “no”s and non-interpretable ones. A “yes” should lead to the next step of helping the baby to approach the food, if necessary. A “no” should lead to removal of food. A non-interpretable cue should simply be noted.


• As part of its program, Graz medical staff stop feeding children through a tube and teach them to connect the concept of hunger to food, all while asking parents not to comfort the children in other ways. "It's extremely hard, but it made a lot of sense," said Farrell, who traveled with Peter and Phoebe to attend the three-week program in March 2007.

• Graz also offers children physical, occupational and speech therapy and something they call Spielessen, or "play picnic."

In Spielessen, staff members every day place various types of colorful food on little dishes on a sheet on the floor. They choose the foods for sensory value - some are salty, some are sweet, some are smooth, some are crunchy.

Initially the children may cry, but eventually they get curious and try to satisfy their natural impulses for exploration. Creative play with food is the main goal, and this provides the opportunity for the child to take initiative in learning to eat. The social aspect - all those children exploring the plates of food - also has an impact, the professor said. "If one kid is eating something, another kid might try it," she noted.

Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients

The presented intervention is based on supervised reduction of enteral formula within a few days supported by a 3 week program of daily movement-, speech- and occupational therapy, psychoanalytically based eating therapy, psychodynamic coaching and nutritional counselling of the infant and his/her parents.

Patients and Methods: 221 cases were included in this study (age 4 months – 10 years). All patients had been severely ill or were handicapped and had been exclusively fed by tube for most of their life time. The major outcome variable was complete discontinuation of tube feeding with sufficient oral feeding after treatment. This was defined as the child’s ability to sustain stable body weight by self motivated oral feeding.

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. 18 children (8%) could not be weaned and remained fully or partially tube fed.

Conclusions: The current method can be used to wean tube-dependent children from prolonged tube feeding by a trained and experienced team. The introduction of oral feeding was possible in most of the referred infants and young children. Tube weaning should be addressed from the beginning of tube feeding in all children who are expected to restore oral feeding. Since successful programs are rare, we have been motivated to present this paper.

1. Introduction

Feeding tubes are used world wide to help children through periods of insufficient weight

gain. The rationale for tube feeding is the inability to sustain sufficient weight gain by oral

intake, often caused by gastrointestinal pathologies, swallowing problems (dysphagia), the

need of highly specialized diets (in metabolic diseases) and any severe medical condition

with need for a higher caloric intake (e.g. inborn heart failures).

Since tube dependency in itself is not officially recognized as disorder or complication there

is no data addressing the mortality rates of tube fed children available. Nevertheless it has

been shown that the mortality of disabled children with long term tube feeding was higher

than in the compared population of oral fed handicapped children25.

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.

Although the number of tube dependent children is growing all over the world, there is a lack

of published literature regarding tube weaning. There are a few case reports1,2 and

behavioural trials centred on tube weaning in handicapped children3,4,5,6. Other case reports

stress the parental aspect in early food refusal7,8,9

, and new information on the complexity of

the development of taste and food preferences10,11 is available through recent results on

flavour programming in childhood. These papers do not specifically deal with tube dependent


The population referred for tube weaning is recruited from all fields of paediatric intensive

care. No specific diagnosis was found responsible in our sample. The only patients seeking

for tube weaning who were not accepted in the program were those with severe dysphagia.

This paper describes the outcome of an standardized tube-weaning program in a population

of severely ill and handicapped children. Due to the lack of other reports on tube weaning in

infancy, a paper by Benoit12 was used to compare our concept with an alternative treatment

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setting. Benoit showed that nutritional counselling alone cannot support a lasting and positive


Since tube insertion is expected to have an overall positive effect on the nutritional status of

the child, associated side effects often are accepted. The reasons for prior tube insertion are

addressed in pediatric and surgical literature13,14,15, and long term complications of tube

feeding16 and home parenteral nutrition (HPN)17 have been discussed18,19,20,21,22,23,24. Of major

significance is the fact that tube feeding has been shown to cause an increased mortality


In order to decrease mortality of long-term tube-dependent children and increase their life

quality by regaining oral autonomy, an effective 3-week program for tube weaning has been

developed. The main focus is on the close links between the medical, biosocial and

psychodynamic aspects26 of tube dependency.

2. Methods


From 1/1/1999 until 12/31/2006 the total of 224 parents requested assistance for weaning

their tube fed child (mean age 793.5 days; range 134-2791; SD 552.26). In each case local

specialists determined the need for tube weaning. In this period of time, three patients fed by

PGT were excluded from the study since introduction of oral feeding was impossible (2 coma

patients and 1 with instable glycogen storage disorder). All 221 included patients were

investigated and treated according to our specific tube-weaning model. The demographic

data of the included children can be seen in Table 1.

All children were treated in the presence of at least one parent or caregiver. Patients’ mean

gestational birth age was 35 weeks (range 23 – 41, SD 4.98). Seventy-eight patients (35.5%)

had been born prematurely between 28 and 37 gestational weeks, forty (18.2%) before 28

weeks of gestation. Sixty-eight (30.9%) patients had been born by Caesarean section,

sixteen (14.5%) had been born as one of twins, twelve (5.5%) were one of a triplet birth. The

remaining 176 children (80%) were product of single birth.

102 (45.4%) children were admitted with a PGT or Gastro Button, 119 (54.6%) with NGT.

118 (53.6%) were male, 103 (46.4%) female. Age ranged between 4.5 months and 10 years.

All children had been fed exclusively by tube for more than 4 months previous to admission

(Mean: 650 days; range 121-2700; SD 476.9), most of them for most of their lives. On

average, patients had been fed by tube for 83.5% of their lifetime (range 14.4-100; SD

21.91). Previous therapeutic efforts of the 221 patients and their families had included

inpatient treatment trials (n=168), outpatient feeding therapy (n=144) and other outpatient

weaning trials (n=216). All children had received outpatient speech therapy including oral

stimulation in their countries of origin. 69 patients came from Austria, 88 from Germany, 11

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from Israel, 5 from Switzerland, 37 from Great Britain, 2 from Croatia and 5 from Denmark, 3

from France, 1 from Algeria. All of them were Caucasian. 19 patients were treated in 1999,

20 in 2000, 27 in 2001, 22 in 2002, 37 in 2003, 18 in 2004, 32 in 2005 and 46 patients in

2006. The mean age at admission was 26.4 months (range 4.5 – 93), mean body mass index

(BMI) at admission was 14.47 (range 10.28 – 23.83; SD 2.19). Patient characteristics and the

classification of the main medical pathology at admission are presented in Table 1.

Study design

The study was approved by the local ethics commission, and the parents of all patients

agreed by written informed consent into the sampling, analysis and publication of the data.

The main hypothesis of the study is: specialized treatment is highly effective and allows

weaning severely impaired children even when numerous previous attempts had failed1. The

primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake. Admission into the program in all cases was based on the goal of full oral feeding and tube removal. Birth data was sampled from maternity cards. To achieve homogenous data quality only comparable data was sampled.

Assessment was done by developmentally trained pediatricians and documented according

to ZTT: DC 0-327,28 including all five diagnostic axes. For the assessment of the relationship

disorder (axis 2 ZTT: DC 0-3) various situations were used including an assessment of a

feeding trial as an example for a stressful situation and the assessment of a relaxed situation

such as unstructured parent-child play. Assessment of quality in parent-infant-relationship

was performed according to the recommendations of semi-structured interview (childworking- model-interview by Ch. Zeanah), video analysis of stressful and less stressful

parent-child-interaction and the observation of the medical and paramedical team during and

around therapeutic sessions. The time of interactive exposure leading to the final score was

at least two weeks in most cases. Since two core members of our team were directly

involved in the development of the ZTT: DC 0-327,28 and translated it into German, the

assessment of quality of parent-child-interactions is suspected to be reliable.

Assessment included weight and length, available growth-data, actual feeding history and a

team meeting with the child and its family. The classification of the medical condition and

handicaps was done using the ICD-1029 codes on Axis 3 of ZTT: DC 0-313. Medical diagnosis

was carried out by pediatricians.

Severity of disease was assessed according to the International Classification of Functioning, Disability and Health (ICF)30,31 using Part 1 (Impairment of body function and structure) and 2 (Activity limitations and participation restriction). The offered scores in ICF were done by paediatricians, neurological specialists and the parents.

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For NGT-fed children, tube weaning was defined by the final and constant removal of the

tube. For PGT-fed children, weaning was defined as total cessation of tube feeding. In most

PGT-fed children the tube was removed within two weeks after discontinuation of feeds. The

end of therapy was defined by discharge. Primary weaning means weaned during inpatient

stay. Children for whom weaning was introduced and accomplished at home during aftercare

are described as secondarily weaned. No distinction was made between gastrostomy and

gastrojejunal tubes. The year of treatment was assigned as the date of discharge. E-mail

contact had been established and is continued with all patients.

When determining whether to use BMI versus % ideal body weight BMI was chosen since

the calculation is more accurate and ideal body weight charts vary strongly.


For better understanding of the following description of the intervention we would like to start

with a very brief case report:

Chin Lin was referred to our program for tube weaning dependent on nasogastral tube

feeding. Chin Lin had been adopted by her American parents from China at the age of 13

months. She had been in care of an orphanage in China after being abandoned and left to be found by her mother. Since Chin Lin was severely malnourished when arriving in the USA

she immediately received a NGT and fortunately recovered quite promptly. At the age of 2

years catch-up growth was sufficient and so weaning her from NGT was discussed as

necessary goal. It seemed clear to everyone that there were no medical reasons preventing

the little girl from learning to eat, but it just did not seem to work.

After one and a half year of unsuccessful trials and feeding programs in Philadelphia, the

little girl was referred to our program. Different to the former trials, intervention this time

seemed to be organized in a paradoxical way: avoiding all kinds of force-feeding and

focusing the interventions to self-awareness, autonomy and motor-skills involved in touching

and handling food.

After a brief assessment of one morning in which the child met the therapeutic team, the tube volume was immediately reduced by 40% on day 1, 60% on day 2 and discontinued entirely at the end of the first week (day 6). Daily therapeutic sessions - as presented below -

encouraged Chin Lin to touch and play with food, to feed her dolls, her parents and her

therapists, gradually resulting in great fun and obvious increase of autonomy and selfassurance in many areas of development. The tube was removed at the end of the first


Oral intake gradually increased over the following fortnight. After 3 weeks the child

could be discharged and returned home. Therapeutic work with the parents included

psychological topics like attachment issues, fantasies about the period of time the child had

survived in a clearly deprived world and the couple relationship itself. This case describes the weaning-process in an unusually “healthy” child having suffered “only” from malnutrition. The case also shows that tube feeding served as a highly rewarding and successful interventionfor nearly one year thereafter the negative side-effects had become greater than benefit.

Most infants referred to our centre have much more complicated medical histories, most of

them being survivors of modern neonatal high-tech-medicine.

This weaning program is a multidisciplinary method excluding any kind of force feeding. The

method has been presented and published previously32,33.

The principle of the program is the establishment of self-regulated oral intake. The increase of oral intake is based on the allowance of hunger due to rapid reduction of food intake by tube. Additionally, parents are counselled not to pressure children to eat and are coached to recognize and read their child’s hunger cues. The main intervention therefore is the promotion of hunger by reduction of tube feeding within 1 – 3 days in a supervised setting including an intensive, non-invasive monitoring of the child’s medical condition and full support of the child’s capacity for autonomous food exploration and self-regulation of intake.

The presented treatment approach is not behavioural. Neither appetite manipulation nor

reinforcement strategies are used. The principles of the program were derived from

nondirective play therapy with toddlers and adapted specifically. Since all patients had a

history of medical intensive care and/or experiences with repeated exposure to force feeding, all of them showed signs of posttraumatic feeding disorders.

There is no formal structure or routine placed around meals. The only repetitive event is the

daily eating therapy session, defined as play picnic.

This central therapeutic item consists of a one hour lasting group picnic (7x weekly at noon, 12 am-1 pm) of 3-6 infants and small children in presence of at least one of their parents, who are told only to interfere on strict demand for help of their child. Food is presented at the picnic as finger food buffet in the middle of the room. All food is located on the floor, using plastic dishes. Touching and playing with it is the main goal. Licking, smelling, touching, biting or drinking is not reinforced specifically. The members of the therapeutic weaning team are often present, but in a very unstructured and unpredictable fashion. The team and the parents are told to eat themselves – if they want to. They often are fed by the children. Parents are strictly told not to feed their child. All other contact with food happens in a more or less unstructured manner regulated solely by the cues of the children and the readiness of the staff and family to react appropriately. The child can see, smell and touch food at nearly all times of the day. But it is never told to eat. Every contact with food only happens if the child wants to.

All patients are treated according to the standardized treatment protocol with 4 to 6 individual

and group treatment sessions per day19 (see typical time schedule, Figure 3).

Page 8

The team supports the parents to review their feeding activities and feeding attempts and

helps them to learn to accept a self regulated behaviour of the child within an environment

offering food on demand. Speech therapy, occupational therapy, nutritional guidance,

psychological counselling and physical therapy are performed on individual needs of the

child. Additionally, parents are encouraged to discuss their anxieties and any emotional

distress with all members of the team.

One of the greatest challenges is to convince the clinical staff to make organizational

changes. Learning to eat can happen only in a clinical environment with a high level of

knowledge and expertise about normal eating, feeding development, failure to thrive,

starvation, malnutrition and other medical, developmental or psychological conditions

associated with food refusal. The core team – paediatricians, nurses and psychologists -

offers three medical rounds per day and is available day and night. In some cases a

psychiatrist is needed to support the parents34. All other members of the medical team are

highly trained in the concept of the weaning program.

The responsibilities of the team

members are as follows:

1. The pediatric team is responsible for coordinating diagnostic and therapeutic units and

monitoring the child’s medical condition. All pediatricians have additional training in

developmental psychology and child psychotherapy. Three pediatricians have specific

training in methods of play therapy and attachment theory in infancy. Additional pediatric

diagnostic procedure – especially every kind of invasive diagnosis - is permitted only in

case of misdiagnosis or emergency.

2. The nursing team is responsible for observing the child and for any intervention to reduce

parental stress. In the course of the last decade the nursing team has been trained to

perceive the physical and mental health condition of the children and the parents. The

team also prepares finger-food trays and appropriate dishes for the daily play picnic and

makes food available all day.

3. Eating therapy: The specific invention of the Graz model is the daily play picnic. Based on

psychoanalytically oriented play therapy it encourages any kind of self motivated action

the infant will present individually and in the group. Any aversive reactions of the children

is tried to be prevented. Interference, wiping, cleaning up, force feeding and any kind of

harassing, intrusive or constant offering of food is prohibited. Active distraction such as

the offering of attractive toys or any reinforcement is also not permitted.

4. Video-analysis is performed to assess and identify intrusive behavior and other

specifically maladjusted patterns of child-parent interaction. One parent is usually present

at the play picnic, the other one can observe the session through a one-way-mirror.

Comments of the parents are identified and positively reframed. This technique reflects

video-therapy as described by George Downing35.

Page 9

5. Patient deficits in functional emotional development are detected by the developmental

psychologist during play sessions using puppets and other creative instruments.

6. Interaction-focused guidance is applied in a task-oriented, unstructured, non directive and

undemanding way by all members of the team.

7. Psychoanalytic oriented psychotherapy with the parents is needed to work on traumatic

events in the child’s and parent’s history, offered only if parents ask for additional

support. Marital distress is perceived in many cases; often the acknowledgement of

prolonged trauma due to the severe illness of the child encourages the parents to assist

their child through the weaning and to postpone any required couple-therapy until after

the child’s treatment.

8. Speech Language Pathologists: Non-traumatic stimulation of the oro-facial area is

directed to correct earlier traumatic oral experiences. SLP also offers differentiated

diagnosis of dysphagia and other pathologies of swallowing function. The risk of

aspiration must be minimized and sometimes requires additional diagnostic procedures.

9. Individual occupational therapy sessions are used to promote tactile mastery,

coordination, cognition and sensory integration through stimulation of the vestibular

system. All tactile stimulation is done by offering “biological” textures since most tube-fed

children are often oversensitive toward tactile stimulation of materials other than plastics.

10. Physiotherapy deals with motor tone and non-constructive feeding patterns. The

frequency varies from 3-6 times weekly, and the sessions may include the parents.

Parents are encouraged to foster independence. It is common for parents to be

overanxious and excessively protective of tube-fed children. Behavioral issues of this

kind are frequent topics in the motor-oriented sessions.

11. Nutritional counselling advises the parents in the transition to normal age-appropriate

nutrition or special diets if needed. Parents accustomed to tube feeding their child face

the challenge of needing to learn about normal food and the specific tastes of their child

within a short time-span.

12. Early intervention is helpful for integrating the new situation into everyday life. Organizing

an effective team for aftercare is necessary.

Statistical analysis

For the description of the population frequencies, mean values, medians and standard

deviations were derived. Time until weaning was defined as the primary outcome variable. All

statistical testing was done on a significance level of 5%. To analyze the primary outcome,

Kaplan-Meier-estimators were calculated. To find differences between subpopulations, chi

square test, log-rank test, and the tests of Breslow and Tarone-Ware were performed.

Kaplan-Meier-Estimation was used in order to include the time variable in the analysis and to

Page 10

enhance comparability16. A Cox-model was used to identify independent influencing factors

and to estimate the related probability (relative risk) for weaning. All statistical analyses were

done with SPSS 14.0 for Windows, version 14.0.1.

3. Results

After treatment, 203/221 (91.8%) patients were weaned completely. Primary weaning within

the 3 week inpatient stay was successful in 180 (81.4%) patients. Another 23 children

(10.4%) were partially weaned but still needed supplemental feeds at night at the time of

discharge; these children were weaned completely during the aftercare phase. The duration

from discharge to secondary weaning in these patients was 29.6 weeks in mean (range 3-

110, SD 36.6). Eighteen (8.2%) children could not be weaned for specific reasons (Table 2).

None of the weaned children relapsed to tube feeding after the program and during the

aftercare phase of 16 months.

Figure 1 illustrates the time until discontinuation of the tube for primary-weaned children.

Tube feeding was stopped completely within 8 days (range 0 – 39) in 50% of patients. The

mean time of inpatient treatment was 21.6 days (range 2-52, SD 9.97). During inpatient

treatment there was an average weight loss of 4.32% (range 0-14.25; SD 3.88). Children

with PGT needed slightly longer to be weaned (log-rank n.s.; Breslow 0.044; Tarone-Ware

0.043) than those with NGT.

A comparison of underlying medical diagnosis (Figure 4) showed no significant differences

between the main groups. However, children with cardiac problems were weaned

significantly faster36 than the others. Patients with inborn errors of metabolism required the

longest time for weaning and made up the majority of secondary weaned children (8/12).

A comparison of the severity and duration of inpatient treatment shows significant differences

(Figure 2). The mean time of weaning increased in relation to the grade of severity (Log-

Rank 0.006; Breslow 0.32; Tarone-Ware 0.15) from 18 days in less severely disabled

children up to 26 days in children with the most severe illnesses.

Table 3 presents the Cox-model for significance and chance (relative risk) for successful

tube weaning. Our sample shows that the chance for successful weaning increases the

earlier in the treatment program the tube is removed. A higher BMI at admission prolongs the

time needed for weaning. An increase in the severity of disease also decreases the chance

for weaning. The results suggest an inverse correlation between gestational age and chance

for successful weaning; preterm born children can be weaned more easily.

Parameters that do not appear to influence weaning time and outcome are: sex, sub-type of

feeding disorder37,38,39, sub-type of interaction classification between parents and child,

degree of functional-emotional developmental delay and the occurrence of birth by

Caesarean section. Developmentally delayed children could be weaned as well as others.

Page 11

Surprisingly, our data indicate that the quality of interaction between children and parents

surprisingly does not significantly influence the weaning-outcome.

4. Discussion


The results of this study indicate that weaning of tube-dependent children from nutritional

tubes was successful in 91.8% of the patients. In contrast to other methods, this program

shows the highest rate of success. It can also be used in severely ill children.

Patients with inborn metabolic disorders needed the most time to be weaned and made up

the majority of secondary-weaned children. This may be caused by the inability to provoke

hunger due to the contraindication of starvation due to the underlying metabolic disease.

Children with the most severe illnesses needed the longest time to be weaned, based on the

fact that these multi-morbid children could be discharged only after regaining full stabilization.

Children with congenital heart diseases were weaned fastest. This may be due to overnutrition19

to gain weight prior to surgery and the children’s better tolerance for short-term


The study showed that a higher BMI at admission increases the time needed for weaning.

Most of theses children were older at admission and had a longer history of tube feeding.

We believe that the longer duration of tube feeding can be seen as a more severe kind of tube dependency that prolongs the time needed for weaning. Maybe children with a higher BMI need longer time for weaning because they have more fat-mass (which has not been

measured within this study) and so they have less hunger than those with very low BMI –

based on the regulation of hunger by adipozytokines.

Every child included in this study had undergone prior failed attempts of weaning. Most had

been hospitalized for long periods and many of them showed the full range of post-traumatic

feeding disorders40 with panic attacks (46%), total food refusal (69%) or high levels of anxiety

(42%). Nearly all the infants treated met the specific criteria of post-traumatic feeding

disorder. Additionally some children showed co-morbidity with the subtype of neuro-sensory

impairment; other children showed co-morbid symptoms of attachment or individuation


All patients who were weaned have remained orally fed. Two children suffered from primary

dwarfism: their growth remained sub-normal, but within the range of expectation for their

specific diagnosis. All parents reported an overall improvement in various developmental

levels, such as speech development, motor and social skills. We have not been able to verify

or categorize these reports since the sampling of data did not follow a clear study design. In

all cases the mean BMI after 3 and 16 months was higher than in the period of exclusive

tube feeding prior to admission.

Page 12


Other methods to introduce oral feeding have been based mainly on behavioral treatment

using flooding-procedures41,42. One model, derived from the Graz model, allows less

severely disabled children to be weaned in a home-based setting43. Premature born

neonates have been weaned using oro-pharyngeal stimulation techniques44,45. Little is known

about the general outcome of tube feeding in infancy.

Since most of the children in our study were severely ill and needed intensive pediatric

monitoring during therapy, the presented method had to be applied in an inpatient setting.

Additionally, the large geographical area serviced made an outpatient setting impossible for

most of the patients.

In this study the treatment was evaluated in its entirety without examining the relative

importance of individual modules. Clearly the method influences the child’s progress in the

developmental task of learning to eat just as much as the specific suitability and fitness of the

therapist’s personality with the child and family. Because the various therapies are

intermingled and cannot be clearly separated, the treatment program is essentially holistic.

Each member of the team works independently, and clinical impressions are shared weekly.

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.

The term “post-traumatic” as defined by Irene Chatoor40 focuses on experiences of direct oral

traumatisation - mostly single or repeated events of choking or gagging. Another

interpretation of the term post-traumatic is to focus on the existence of a retrograde mental

trauma caused by chronic deprivation from the loving care taker or repeated and dramatic

scenes of separation during long hospital admissions. In the classification as used in our

program which has been adapted from Chatoor´s work on feeding disorders in the 1980s we

define post traumatic feeding disorder as shown by the existence of explicit food refusal, food

avoidance, turning away the head when food is presented, mostly combined by tactile

hypersensitivity, disgust and the unwillness to even touch food. Nearly 90% of our the

population of tube dependent children spent their first weeks in live on intensive-care-units

thus repeatedly being exposed to suction, oral mechanical traumatisation and experiences of

repeated aspirations.


Since it has been shown that tube feeding is associated with troubling side effects and

increased mortality rates in children26, weaning should be the main goal in treatment.

Page 13

The present treatment costs $864 (USD) per day when applied as inpatient therapy and the

total inpatient treatment cost is approximately $18,000 (USD). The program when applied as

outpatient costs 10% of the presented fees. The number of children treated in the inpatient

setting was equal to the number of children treated as outpatients, even though the monthly

groups varied in size from 2-8 infants/group and their chosen kind of setting.

The economic and psychological costs caused by gastrostomy tube feeding are estimated to

be $37,232 (USD) per year46. Hospital costs for treatment of associated complications

increase the annual cost of gastronomy tube feeding. The three-week inpatient tube

weaning program is therefore economically justified and reduces a burden on healthcare

systems. Additionally, our inpatient program allows weaning severely ill children for whom

outpatient weaning would not be possible. Fully randomized trials in tube weaning are

practically impossible because parents insist on weaning their child as early and as quickly

as possible. Any attempt to divide the population into two groups, of which only one received

treatment can be dismissed on ethical grounds. Nevertheless, as Benoit13 has pointed out,

different therapy protocols can be used. The introduction of oral feeding improves the quality

of life47,48, leads to very positive general developmental changes and reduces the rate of


The field of tube feeding is not well investigated and the overall success of tube feeding has

not yet been shown in reviews, with the exception of tube-fed children with cerebral palsy50.

In conclusion, as other authors have also suggested, weaning should be the primary goal in

treating those tube-fed children51 who are candidates for selective and short-term tube

feeding. We believe that weaning is possible in most children lacking severe cerebral

dysfunction with severe dysphagia. Questions regarding the indication of tube feeding, the

recommendation of duration of tube feeding, the nutritional aspects of prior tube feeding and

during the tube weaning phase, food preferences during the transition from tube to oral

feeding and aftercare are not addressed in this study. Further investigations are needed to

develop clear criteria for these questions. Since 2007 – due to increase of referrals (71 within

the first 9 month of 2007) - we have changed the presented inpatient model to a mainly

outpatient one and have introduced a computerized data collection method, of which we

hope to present further interesting details in the near future.


We wish to thank Stephanie Farell from Philadelphia, USA (mother of a tube weaned child)

and Jack David Dunitz from Zürich, Switzerland (Scientist, specialist for relationships

between the atoms of human proteins) for their patience and help in the linguistic matters of

this paper. We thank Markus Wilken, Siegburg, Germany for his ongoing collaboration with

the Graz model of tube weaning and his constructive adaptation as a home based weaning

Page 14

model for children not needing an inpatient setting. We also thank all our colleagues in Graz,

Vienna, Salzburg, Israel, Zürich, Toronto, Berlin and many more centres for their trust in

referring “unweanable” patients and their constant positive reinforcement and interest in the

presented weaning method. We also thank A. Linzbichler (Department of Child Radiology

Graz), E. Kerschischnik (Physiotherapy), M. Knappitsch (SLP), Chr. A. Hauer (Division of

Gastroenterology), U. Sechser (Department of Nutritional Sciences), M. Höllwarth and A.

Huber (University Hospital for Child Surgery Graz) for their constant support in diagnostics

and treatment of this large group of specifically referred patients from abroad. We also thank

J.Wittenberg (Hospital of Sick Children, Toronto), Julie Menella (Monell Centre of senses),

Philadelphia, A. Levine and Y. Roth (Wolfson Medical Centre, Holon, Israel), M. Keren (Geha

Medical Centre, Tel Aviv, Israel) for their cooperation in the treatment of the Israeli patients.

Special thanks to E. Kvas (Hermesoft, Graz, Austria) for bio-statistical counselling. This study

was partially supported by grants from the Styrian Government (Austria), department for

science and research. The Graz model has been issue of a professional film documentation

“the child that never ate” broadcasted by VGOODFilms, U.K. in 2006.


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This conversation has been closed to further comments


View replies by

Sally - posted on 09/03/2012




Thank goodness you were brave enough to risk legal trouble to give your child what she needed instead of what the doctors wanted. She's lucky to have a mom like you.

Sally - posted on 09/03/2012




Thank goodness you were brave enough to risk legal trouble to give your child what she needed instead of what the doctors wanted. She's lucky to have a mom like you.

Ana - posted on 08/31/2012




I'm glad you shared your story.. I had never heard of this before..You are definitely creating awareness..

Glad little Brianna is feeling better and eating on her own..

Such a brave mother....

Jenn - posted on 05/31/2011




Thanks again for sharing Mel - I think it truly sheds light onto your situation to not only help us understand where you're coming from better, but to bring awareness to the issue.

[deleted account]

Delighted you shared Mel.:-)
We spoke in another thread about your daughters tube dependency.This no doubt will spread awareness about this issue.

Its been a tough road but the outcome was great.Well done to all the medical staff.Your daughter is very lucky.Shes blessed to have such caring parents.Who stuck by her all the way.You never gave up, until you got your baby girl sorted.Well done.Best of luck in your lives.Ash. ♥

Mel - posted on 05/31/2011




yeah its a long read, I actually read thru it again this morning , hadnt read it since 2009 and I was like wow that just took about an hour of nap time up lol. I felt like I should put all the information on as well rather then cutting half of what her ped had sent to me

Jodi - posted on 05/31/2011




Thank you for sharing Mel. I haven't actually been online much today, so haven't had the chance to read it in its entirety, but wanted to at least let you know that I saw it, and will have a read as soon as I have the opportunity.

Cynthia - posted on 05/30/2011




thank you for sharing your story with us, i did not know anything about tube feedings, thank you for the info, you did a wonderful job for your daughter

[deleted account]

I'm soryr I haven;t had the chance to read through all of the information yet, but I will! I appreciate you sharing som much private and personal information about your daughter. I can understand some of your passionate postings based on your experiences. Thank you for allowing us to be part of that.

Tara - posted on 05/30/2011




Yeah Mel, thank you for taking the time to post all of that information for us.
I can understand more of where you are coming from when you talk about your experiences as a mother.
I can see now why you worry more than others when it comes to breastfeeding and solids etc.
This does show that your daughter had special needs, that she had extenuating circumstances.
That she would not fall within what is termed average or normal. Therefore none of the information about breastfeeding or solids etc. that is generally accepted would necessarily apply to her.
Thanks again for posting Mel.

Isobel - posted on 05/30/2011




Thank you for sharing that with us Mel. Sorry I didn't respond sooner, but it took me ALL day to read it ;)

Mel - posted on 05/30/2011




some emails from the Professor: > Date: Tue, 7 Jul 2009 02:59:05 +0200
> From:
> To:
> CC:
> Subject: Antw: RE: Antw: tube weaning
> Hello, well you are at the right place.
> We are specialized for tube wenaing and offer an Email-coached wenaing service for alltogether 3x 350.- euro.
> 1. rate to be paid for registering and diagnostic assessment
> 2. to be paid after we have accepted her and start
> 3. to be paid after the weaning project is succesfully finished.
> Please take a look at
> Brianna is definitely in the best age and if you like to register, we will send you the qeustionnaires immediatly.
> Kindly MDS

Wednesday, 8 July 2009 8:14:06 AM
Dear Mel,
I fully understand, and I am glad to also offer any kind of help or support or awnser questions for anybody from the team concerned about you and your little girl.
1. One must wean fast, in 2-3 weeks the transition must happen, otherwise the Child gets used to reduced intake and will not develop good oral capacities.
2. Please dont wait another 6 month, the later, the harder.
3. Please ask them how they woudl organize the weaning. SOmetimes the teams are very stressfull, but have no idea how exactly they think they will do it, because nobody knows.So Please feel confident to ask clear questions and demand clear awnsers. One cannot threat and stress parents but offer no clear guideline.
4. I include 2 recently published papers.
5. WE could start a trial of email coached wenaing after august 30th.this takes also about 2-3 weeks.
6. Kindly talk to them and find out if we could cooperate.
Please get in touch with Karelle, she is wonderful.

YOUrs KIndly MDS,,

Dear Mrs. Melissa Jayde,

my name is Petra Kaimbacher. I am a psychologist and member of the Grazer tube weaning team. Prof.Dunitz-Scheer asked me to get in contact with you. In the attachment you'll find the questionnaire that we use before starting with the program. The questionnaire contains questions about the eating beavior and current feeding situtaion of your child. Please fill in all the questions and send it back as Prof. Dunitz-Scheer needs this information for the ongoing process of tube weaning.

If you have any questions concerning the tube weaning program or the questionnaire please feel free to contact me.

With kind regards

Petra Kaimbacher

Wednesday, 8 July 2009 5:55:35 PM
Dear mel,
1. They money business can wait, please dont worry about that.
2. I think it would be far better to try to solve her problem without the enourmous travel to Europe.
3. I woudl be very glad to communicate with the collegues of the feeding team you have.
4. I need to know if she can swallow at all.
5. IF she can swallow certain things well, like thikened milk or mashy food, shen she can be weaned. IF she cannot, then she cannot be weaned, not now and not in 6 month. SO the functional aspect of the swallowing is very important for me to know.
Has she suffered from recurrent lung infections? Do tehy let you feed anything?? Or have they forbidden you to feed?
6. IF one weans of the tube, one must know what one is doing. IT is comparable with any addictive habit, IF you want to do it one must go for it and do it in 1-2 weeks. SLowing it up only makes the child get used to less calories and does not work.
Lets find a special solution for you, I am sure we will manage.
Kindly, Please give my appreciation also to Karell, if you should speak with her!

Wednesday, 8 July 2009 5:57:34 PM
feel free to hand them one, the guideline paper was published in ICAN this april, the result paper is in press at the JIMH.
Kindly MDS

Friday, 10 July 2009 9:36:10 AM
Dear Mel, is this feeding team specialized in tube weaning?
Do they have any plan?
What do they want to do in the 6 month they propose?
Please find this out.
Must you work with them?
I include still more lit. Please let me know what will be decided, but I must repeat, the sooner the weaning happens, the less chance of her becoming or remaining tube dependent.
6 MOnth is only good if they realy have a intensive and good plan what they want to do with which goal.
Kindly MDS

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