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We  frequently work with children born with a range of genetic syndromes. Among these, are children with CHARGE syndrome who, with the help of our feeding team, are able to improve their eating skills – or even learn to eat for the very first time, like Luna.

Luna’s history: Luna is almost 2 years old when she comes to NoTube EAT Campus with her parents. She was born with CHARGE syndrome. Due to her symptoms, many medical interventions and long inpatient treatment, Luna is completely fed by tube. She has a PEG tube and gets small amounts of tube formula directly into her jejunum throughout the day via a feeding pump. Luna and her parents have experienced a lot in the short time since Luna was born. As they take this next step, her parents seem prepared and ready to let Luna learn to eat. The doctors in charge have given their permission. Luna is self-determined; “she is of strong character,” her father says. It appears this will be an advantage; Luna is clearly ready to get started .  During her first Play Picnic at NoTube’s Eating School, she puts her fingers, and even her whole hands, in a tub of custard. Before long, she is covered in custard from head to toe. As the weaning process progresses, Luna dares to do more and more.  Her father, in particular, can see her potential and Luna is provided with the foods she likes best. Her favourite is fruit yogurt: only strawberry or banana will do. Sometimes her father is allowed to feed her, but Luna prefers to self-feed. Her father helps: they alternate between red, blue, green and white spoons. During the Eating School, Luna has a lot of fun and participates willingly in all of the therapeutic activities;she is even the last one to leave the Play Picnic. Once she is back home, Luna increases her intake even more. In aftercare treatment, she gets completely weaned off her feeding tube. Meanwhile, baby jars containing all the  different flavours begin appearing on her table. After 2.5months, Luna does not need any tube feeds.

But what does it mean when a child is born with CHARGE syndrome?

A syndrome always describes a group of symptoms that are typical for a specific illness, and this is the case  in CHARGE syndrome, also known as CHARGE association. It is a congenital defect, leading to malformations of different body regions and organs. Each letter in the acronym CHARGE stands for one of the most common symptoms of this illness:

  • “C” in Charge stands for “coloboma” of the eye, in which the optic cup doesn’t close adequately leading to one of many possible vision or eye problems.
  • “H” in cHarge stands for malformation of the heart. There may be single or multiple malformations, frequently requiring surgical intervention.
  • “A” in chArge stand for choanal atresia.  The choanae might already be blocked at birth on one or both sides, or there might be stenoses.
  • “R” in chaRge means retarded growth after a normal birth weight, which can be associated with developmental delays.  
  • “G” in charGe refers to various malformations of the genitals.
  • “E” in chargE stands for malformations of the ears and auditory canal. Frequent symptoms are hearing problems with a variety of characteristics.

As with many genetic syndromes, the CHARGE association can present with a range of  individual symptoms and characteristics. The diagnosis is based on specific criteria and confirmed by genetic testing. Worldwide, one in 15000 children is affected.

Additional symptoms are malformations of olfactory nerves, esophagus or larynx. Researchers state that at least 80% of all children with CHARGE syndrome have aspirated at least once, and 25% have a tracheostomy. Nearly 90% of all children develop eating problems, such as gastroesophageal reflux or sucking or swallowing disorders, at a very young age. This is understandable  when one remembers that children born with this syndrome have to fight for their lives and have severe medical problems that need to be solved. The typical learning-to-eat process, which happens naturally in healthy children, does not take place in children with CHARGE. Many examinations, interventions and surgeries are necessary, a feeding tube is placed, and learning to eat fades into the background. In some cases, oral feeding is not even possible in the early weeks.

After all urgent medical problems have been solved, the health situation is stable, the swallow is safe, and the feeding tube not necessary anymore, it is possible to wean children off their feeding tubes and help them learn to eat, step by step. An interdisciplinary and individual approach is crucial. We at NoTube use such an approach to accompany families and children throughout the process in our Eating Schools and via our Netcoaching program.

We have helped many children with CHARGE syndrome and their families to live a tube-free life and look forward to supporting you, too.

References:

  • Hudson, A., Macdonald, M., Blake, K. Packing and Problematic Feeding Behaviors in CHARGE Syndrome: A Qualitative Analysis. International Journal of Pediatric Otorhinolaryngology. 2016. 82: 107 – 115.
  • Dobbelsteyn, C., Peacocke, S.D., Blake, K., Crist, W., Rashid, M. Feeding difficulties in children with CHARGE syndrome: prevalence, risk factors, and prognosis. Dysphagia. 2008;23:127–135