Tube Weaning - Stories from two Brisbane Families
Is your child currently fed by a tube and dependent on this tube for all their nutrition? Do you wish for them to be able to eat orally, with them in control and enjoying their food and in the process transforming their (and your) lives?
Let us tell you our stories....
Our names are Francesca and Keren. We are the Mums of two very special little girls, Lucia (aged 5) and Ella (almost 2). Lucia’s and Ella’s underlying medical conditions and medical treatments, procedures and surgeries were all very different. The only similarities are our children both ended up needing to be fed by tube and we were both patients of the Mater Complex Care team (which is how we got in touch with each other!).
Medically tube feeding for both Lucia and Ella was a very necessary treatment at the time. However, when the tube had served its purpose and was no longer medically required, sadly both our children were completely dependent on the tube for their nutrition.
What is tube dependency?
“Tube dependency is recognised as an unintended result of long-term tube feeding in infants and young children. The condition involves disturbing side effects such as vomiting, gagging and active food refusal. It prevents infants from making the transition from tube to oral feeding and from starting to learn to eat in the absence of any medical indication for continuing of enteral feeding. Tube dependency can have a destructive impact on the child’s development, even in cases when the nutritional influence might be beneficial.” 1
For those of you with tube dependent children, you will know the daily nightmare that this encompasses. For our families the whole process of nutrition was a battle between getting enough food in and having your child keep it down whilst experiencing pain and oesophageal distress. The calculation of weights, formula volumes and the logistics of managing a tube feed with the dreaded (beeping) feeding pump, particularly with an increasingly mobile child were a real challenge. There was also the regular attendance at various therapy sessions to improve their oral skills, but after many months (and years) despite the best intentions of all involved there was little or no improvement.
When you consider how big a part eating and importantly the whole social process around eating is in our daily lives you realise how much our kids are missing out on. Eating is not just about nutrition, that’s for sure.
For us as Lucia’s and Ella’s parents the focus for our girls moved from medical treatments to save their life to how to improve their quality of life. Like most worthwhile things in life, this takes effort. You have to continue to be a strong advocate for your child.
Graz tube weaning program
Our research led us to the Graz tube weaning program, run by the University Children’s hospital in Graz, Austria. This is a state run (non-profit) teaching and research centre of international reputation. The inter-disciplinary team in the Psychosomatic Unit of the Department of General Paediatrics have over the past 20 years developed their tube weaning program (the Graz model) led by University Professor Doctor Marguerite Dunitz-Scheer. They have treated nearly 1000 tube dependent children from all over the world and have a success rate of more than 94% in children who were all defined as impossible to wean from their tubes. The Graz web-based coaching program was premiered in the summer of 2009.
Lucia completed her tube weaning program as an Out-Patient in Austria in June 2009. Lucia attended the University Children’s hospital in Graz each day for 3 weeks, participating in daily food Play Picnics and attending various related therapy sessions (e.g. speech therapy and occupational therapy). Lucia left Graz at the end of the 3 weeks (July 2009) completely orally fed, gaining weight and no longer vomiting. Lucia’s gastrostomy button was removed in October 2009 and she has made consistent progress in areas of speech, gross motor skills and overall confidence.
Ella completed her tube weaning using the Graz Net Coaching program in July 2010. This program involved sending daily emails, video uplinks and clinical observations and notes to the team in Austria. Ella was able to stay in her own home and regular daily environment surrounded by her family and usual support network. The costs were obviously much lower too than travelling to Austria. Importantly, Ella was supported by her medical team at the Mater Children’s hospital in Brisbane. This included a multi-disciplinary team of Paediatrics, Complex Care, Speech Pathology, Occupational Therapy all led by Dr Sue Wilson from the Child, Youth & Mental Health department at the Mater.
Each weekday for over two weeks Ella attended the Mater Children’s hospital to participate in food Play Picnics and to undergo medical review and supervision. Each tube weaning program is tailored for each child and each child’s journey will be different. For Ella, Day 18 of the program was the real turning point when Ella started to really EAT! Ella is now completely orally fed and is steadily gaining weight. She no longer has or needs her prescription formula (Neocate Advance) or medications such as Losec and Domperidone. She last vomited on Day 7 of her tube wean. Her Gastrostomy button will be removed in the coming months (surgery schedules permitting).
For both Lucia and Ella commencing oral eating has TRANSFORMED their lives.
Their medical journeys and conditions, although very complex were very different. Their Graz tube weaning programs were also different. However, the end result has been the same – two happier, more engaged, alert children who have gained weight steadily since eating orally. Meal times are a PLEASURE. We can’t recommend highly enough the Graz tube weaning program.
Key messages
- - Trust your instincts about your child (they will thank you for it).
- - Do your research. There are many others in Australia who have successfully completed the Graz tube weaning program. There are also a growing number of Brisbane medical professionals who are becoming aware of the Graz program.
- - University Professor Dr Marguerite Dunitz-Scheer University Professor Dr Medical Peter Jaron Zwi Scheer from the University Children’s hospital in Graz, Austria will be visiting Australia, including Brisbane on Monday 24th January, 2011 to present the Graz method to interested Professionals and also families. Their visit is being supported and sponsored by the Mater Children’s hospital. There will be a Family Information session where families can learn more about the Graz tube weaning method and to ask questions directly of the Professors. This will also be an opportunity to meet and talk with other families with tube feeding dependent children. This session is FREE for families and will include lunch and an opportunity for tube dependent children to participate in a Play Picnic. Note - places will be limited. If you would like more information on this visit please contact Francesca on 07 3217 2261 or Keren on 07 3311 5415.
Further Reading / Links:
1 ICAN: Infant,Child, & Adolescent Nutrition “Prevention and Treatment of Tube Dependency in Infancy and Early Childhood (http://can.sagepub.com/cgi/content/abstract/1/2/73)
