choose the most suitable tube weaning program fro your child








7 reasons to free your child








8 reasons parents continue to tube feed their children




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The heart is an essential organ in human beings that is susceptible to various malformations during a child’s intrauterine development. These are referred to as congenital heart defects.

The most common heart defects are:

  • Ventricular Septal Defect (VSD), a hole in the wall dividing the lower ventricles of the heart (the septum), is the most common congenital heart defect.
  • Tetralogy of Fallot is the name of a complex heart defect consisting of several malformations of the heart. One result of this defect is cyanosis, a bluish discoloration of the skin.
  • Atrial Septal Defect (ASD) is a hole in the wall dividing the upper chambers of the heart (the atria) that is present at birth.
  • Patent Ductus Arteriosus (PDA) is a condition in which the ductus arteriosus (the connection between the pulmonary artery and the aorta) fails to close, a process that would normally occur within several weeks after birth.
  • Aortenisthmusstenose als eine angeborene Gefäßfehlbildung (ISTHA).
  • Aortic Stenosis as a congenital defect of…?
  • Transposition of the Great Arteries (TGA), is a condition in which the aorta is being supplied from the right ventricle while the  pulmonary artery is being supplied by the left. This defect leads to a life threatening oxygen deficiency throughout the body when left untreated.
  • Pulmonary Valve Stenosis, in which the cusps of the pulmonary valve are thickened.
  • Aortic Valve Stenosis (AS), a narrowing of the valve between the heart and the main artery leaving the left ventricle.  
  • Atrioventricular Canal Defect (AVC)
  • Hypoplastic Left Heart Syndrome (HLHS) is a defect of the entire left side of the heart. After birth, it results in life threatening disorders in the circulation system.
  • Patent Foramen Ovale (PFO) where the natural hole (foramen ovale) in the interatrial septum, which is essential during intrauterine development, fails to close completely, leading to complications (e.g. cyanosis).
  • And many other conditions that a child may either grow out of or for which surgical intervention and correction are possible and necessary.

Heart defects often develop/occur in connection with other illnesses or defects, such as a genetic syndrome. About 50% of children who are born with Down Syndrome, for instance, suffer from a heart defect.

How many children are actually impacted?

On average, 1 in 100 infants is born with one of these conditions. While a heart defect was considered a death sentence 60 years ago, today approximately 90% of those affected survive, a number that is increasing thanks to advancements in medicine. A full recovery is not possible in all cases and some of these small patients contend with chronic illness throughout their youth and adulthood. Numerous surgical or catheter interventions can be necessary over the years. It is now fortunately possible to identify various heart defects during pregnancy. Many defects require intrauterine intervention, others will be operated upon immediately when the child is born. In many cases, however, an operation is not possible until several months after birth.

Because children with these conditions may be weak and unable to drink sufficient amounts to meet their nutritional needs, a tube is frequently placed immediately after birth. In certain cases, a tube may be placed in preparation for an imminent surgery, which naturally requires an optimal nutritional state. Depending on the severity of the heart defect and the number of procedures, a tube usually remains in place from months to years with the goal of supplying the child with adequate nutrition for them to thrive. Many surgical procedures also require that the child have reached a specific body weight. As this process unfolds, the goal of learning to eat slips, understandably, into the background.

What happens, though, when the heart defect has been repaired – can these children learn to eat?

Many parents have been envisioning feeding their child on their own since the birth, but  during this time of intensive medical intervention, the child had to spend direct all of their energy toward survival and learning skills for eating shifted into the periphery. Yet, once the family leaves this difficult time behind them and there are no more medically based obstacles, these little fighters can also learn to eat.

We at NoTube meet countless children with heart defects and are able to help them wean them from their feeding tubes through our several specifically designed programs. The children are able to playfully encounter eating and drinking in a safe environment with medical supervision (initially) and diminish the dependence on the feeding tube, as well as other fears that may be connected with learning to eat. Our success rate is over 90%. In particular, children with congenital heart defects demonstrate an extremely high weaning rate with the “Graz Model of Tube Weaning.”

(http://explore.notube.com/hubfs/Literature_pdfs/2006.Trabi_T_Dunitz-Scheer_M_Scheer_P._Weaning_in_children_with_congenital_heart_diseases_from.pdf).

We look forward to helping your child achieve a tube free life; a heart’s desire can be fulfilled.

Bibliography

https://www.herzkinder.at

Lindinger A, Schwedler G, Hense HW. Prevalence of congenital heart defects in newborns in Germany: results of the first registration year of the PAN Study (July 2006 to June 2007). Klin.Pädiatrie. 2010; 222(05): 321-326. DOI: 10.1055/s-0030-1254155 (german).