{"id":6294,"date":"2022-04-21T13:32:19","date_gmt":"2022-04-21T12:32:19","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=6294"},"modified":"2026-04-22T11:49:19","modified_gmt":"2026-04-22T10:49:19","slug":"charge-syndrome-eating-and-drinking-difficulties","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-eating-and-drinking-difficulties\/","title":{"rendered":"CHARGE syndrome: eating and drinking difficulties"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page is about eating and drinking difficulties commonly experienced by children with CHARGE syndrome.<\/p>\n\n\n\n<p>It covers the types of behaviour and their risks, and how various features of CHARGE, as well as early medical interventions, can cause specific difficulties.<\/p>\n\n\n\n<p>You\u2019ll also find a brief overview of approaches taken by occupational therapists and speech and language therapists to manage eating and drinking difficulties.<\/p>\n\n\n\n<p class=\"is-style-default\">On this page:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li><a href=\"#how\">How common are eating and drinking difficulties with CHARGE syndrome?<\/a><\/li>\n\n\n\n<li><a href=\"#why\">Why do children with CHARGE syndrome have difficulty eating and drinking?<\/a><\/li>\n\n\n\n<li><a href=\"#cranial\">Cranial nerve problems<\/a><\/li>\n\n\n\n<li><a href=\"#respiratory\">Respiratory (breathing) problems<\/a><\/li>\n\n\n\n<li><a href=\"#tracheo\">Tracheo-oesophageal fistula<\/a><\/li>\n\n\n\n<li><a href=\"#cleft\">Cleft lip or palate<\/a><\/li>\n\n\n\n<li><a href=\"#choanal\">Choanal atresia<\/a><\/li>\n\n\n\n<li><a href=\"#sensory\">Sensory integration problems<\/a><\/li>\n\n\n\n<li><a href=\"#executive\">Executive function difficulties<\/a><\/li>\n\n\n\n<li><a href=\"#obsessive\">Obsessive-compulsive disorder<\/a><\/li>\n\n\n\n<li><a href=\"#nasogastric\">Nasogastric tube feeding<\/a><\/li>\n\n\n\n<li><a href=\"#frequent\">Frequent early medical interventions<\/a><\/li>\n\n\n\n<li><a href=\"#managing\">Managing eating and drinking difficulties<\/a><\/li>\n<\/ul>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10  align-right  size-medium\">    <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\"><strong>Sense is here for everyone with CHARGE syndrome<\/strong><\/h2>\n\n\n\n<p class=\"is-style-default\"><a href=\"https:\/\/www.sense.org.uk\/our-services\/support-in-your-area\/\">We offer support all over the UK<\/a>. Whether you need some expert advice, a place to socialise, or help with communicating or getting around, we offer something for everyone. Because no one should be left out of life.<\/p>\n\n\n\n<p class=\"is-style-default\">To find out what kind of support we could give you or your loved one, speak to one of our friendly team.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-secondary\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\">Contact us<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h2 class=\"wp-block-heading\" id=\"how\"><strong>How common are eating and drinking difficulties with CHARGE syndrome?<\/strong><\/h2>\n\n\n\n<p>Studies suggest that as many as 80\u201390% of children with CHARGE syndrome have great difficulty eating and drinking.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Behaviours can include:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Refusing food.<\/li>\n\n\n\n<li>Gagging.<\/li>\n\n\n\n<li>Holding breath.<\/li>\n\n\n\n<li>Holding food in the mouth.<\/li>\n\n\n\n<li>Forcing food out of the mouth.<\/li>\n<\/ul>\n\n\n\n<p>These difficulties can lead to risks of:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Dehydration and malnutrition.<\/li>\n\n\n\n<li>Food going down the wrong way into the airway.<\/li>\n\n\n\n<li>Choking.<\/li>\n\n\n\n<li>Infection.<\/li>\n\n\n\n<li>Delayed development of eating and drinking skills.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"why\"><strong>Why do children with CHARGE syndrome have difficulty eating and drinking?<\/strong><\/h2>\n\n\n\n<p>Children with CHARGE syndrome have difficulties eating and drinking because of many features of the condition and some related early treatments.<\/p>\n\n\n\n<p>See our full definition of <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/what-is-charge-syndrome\/\">CHARGE syndrome<\/a>. <\/p>\n\n\n\n<p>Below, we&#8217;ll look at the specific causes of eating and drinking difficulties related to CHARGE syndrome.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"cranial\"><strong>Cranial nerve problems<\/strong><\/h3>\n\n\n\n<p>The cranial nerves are a set of 12 paired nerves in the back of the brain that send electrical signals between the brain, face, neck and torso.&nbsp;<\/p>\n\n\n\n<p>They help us taste, smell, hear, feel sensations, make facial expressions, blink and move our tongues.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Smell\"><strong>Smell<\/strong><\/h3>\n\n\n\n<p>Smell plays an important part in taste.<\/p>\n\n\n\n<p>Lack of smell affects your child\u2019s developing taste system, makes food less appealing and so hinders the development of normal eating and drinking behaviours.&nbsp;<\/p>\n\n\n\n<p>Lack of smell also affects infant and mother bonding.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Weak\"><strong>Weak suck\/poor chew<\/strong><\/h3>\n\n\n\n<p>Poor muscle and sensory control lead to chewing and swallowing difficulties.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Gastro\"><strong>Gastro-oesophageal reflux<\/strong><\/h3>\n\n\n\n<p>Gastro-oesophageal reflux is when acid from the stomach leaks up into the oesophagus (gullet).<\/p>\n\n\n\n<p>Apart from the physical difficulty this causes, it can also turn mealtimes into a bad experience for your child. This, in turn, can make eating and drinking even more difficult for them.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"respiratory\"><strong>Respiratory (breathing) problems<\/strong><\/h3>\n\n\n\n<p>Your child\u2019s breathing may be interrupted during eating and drinking.&nbsp;<\/p>\n\n\n\n<p>If they\u2019ve had a tracheostomy \u2013 a surgical hole through the front of the neck and into the trachea (windpipe) \u2013 this can interrupt the normal pattern of sucking, swallowing and breathing.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-secondary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<p>Other features that can affect breathing in children with CHARGE are:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Laryngomalacia \u2013 floppy or collapsing larynx (the voice box, including vocal cords).<\/li>\n\n\n\n<li>Tracheomalacia \u2013 floppy or collapsing airway.<\/li>\n\n\n\n<li>Subglottic stenosis \u2013 narrowing of the airway below the vocal chords and above the windpipe.<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h3 class=\"wp-block-heading\" id=\"tracheo\"><strong>Tracheo-oesophageal fistula<\/strong><\/h3>\n\n\n\n<p>Tracheo-oesophageal fistula is a faulty connection between the oesophagus (the gullet) and the windpipe.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"cleft\"><strong>Cleft lip or palate<\/strong><\/h3>\n\n\n\n<p>A cleft lip or palate is a&nbsp;gap or split in the upper lip and\/or the roof of the mouth.&nbsp;<\/p>\n\n\n\n<p>A baby with a cleft lip and palate may not be able to breastfeed or feed from a normal bottle&nbsp;because they cannot form a good seal with their mouth.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"choanal\"><strong>Choanal atresia (atresia choanae)<\/strong><\/h3>\n\n\n\n<p>Choanal atresia (atresia choanae) is when the back of the nasal passage is blocked or narrowed on one or both sides, or doesn&#8217;t connect with the back of the throat.&nbsp;<\/p>\n\n\n\n<p>This can interrupt the normal pattern of sucking, swallowing and breathing.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"sensory\"><strong>Sensory integration problems<\/strong><\/h3>\n\n\n\n<p>Sensory integration refers to how our senses work together to perform everyday tasks such as eating and drinking.&nbsp;<\/p>\n\n\n\n<p>Because of sensory integration problems, your child may not be able to stay alert or sit still to eat and drink. They may also fall asleep during eating and drinking.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-sensory-integration-problems\/\">Read more about CHARGE syndrome and sensory integration.<\/a><\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"executive\"><strong>Executive function difficulties<\/strong><\/h3>\n\n\n\n<p>Executive function refers to mental skills we use to organise and manage tasks in everyday life and control behaviour.&nbsp;<\/p>\n\n\n\n<p>Executive function difficulties can make it difficult to start mealtimes or to get your child to start eating and drinking.&nbsp;<\/p>\n\n\n\n<p>They may even find it difficult to stop eating, despite being full.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"obsessive\"><strong>Obsessive-compulsive disorder<\/strong><\/h3>\n\n\n\n<p>Obsessive-compulsive disorder is a condition in which people can\u2019t stop having certain thoughts or doing things in a repetitive pattern.&nbsp;<\/p>\n\n\n\n<p>This can make it difficult to start mealtimes unless they follow very strict routines and patterns.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"nasogastric\"><strong>Nasogastric tube feeding<\/strong><\/h3>\n\n\n\n<p>Nasogastric tube feeding \u2013 a narrow, bendy&nbsp;feeding tube&nbsp;that goes through the nose and all the way down into the stomach.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"frequent\"><strong>Frequent early medical interventions&nbsp;<\/strong><\/h2>\n\n\n\n<p>Frequent early medical interventions for children with CHARGE syndrome can include making sure they have a secure airway and stabilising their condition.&nbsp;<\/p>\n\n\n\n<p>Both nasogastric tube feeding and frequent early medical interventions can:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Affect the natural development in a newborn baby of the link between oral feeding (being fed by mouth) and feeling full or satisfied.<\/li>\n\n\n\n<li>Lead to missing key critical periods for development because of a delay in starting oral feeding.<\/li>\n\n\n\n<li>Affect a baby\u2019s ability in the first two or three months of life to manage their level of arousal in response to internal or external stimuli (something that causes a reaction, such as sound or light). This is known as \u201cinfant state regulation\u201d.&nbsp;<\/li>\n\n\n\n<li>Affect a baby\u2019s ability in the first two to six months of life to associate mealtimes with enjoyable social activity.<\/li>\n\n\n\n<li>Affect a baby\u2019s ability in the first 6\u201336 months of life to develop a sense of self, including control and understanding their own physical and emotional states.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"managing\"><strong>Managing eating and drinking difficulties<\/strong><\/h2>\n\n\n\n<p>Occupational therapists and speech and language therapists with expertise in CHARGE syndrome can help through a range of approaches:&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<ul id=\"block-7531f8df-e346-4f86-9512-72dae09a45cd\" class=\"wp-block-list is-style-primary-bullets\">\n<li><strong>Messy play<\/strong> is a great way to help your child explore food in a fun and relaxed way, overcoming any fears they have about eating and drinking.&nbsp;<\/li>\n\n\n\n<li><strong>Exploring food textures. <\/strong>From those that fall off the fingers easily to those that stick to the hands and have to be wiped repeatedly \u2013 this can be a helpful approach to building up your child\u2019s tolerance of different food textures.&nbsp;<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/hand-under-hand-signing\/\">Hand-under-hand exploration technique<\/a><\/strong>. For messy play and exploring food textures, this technique can be a safe way for your child to develop trust and experience new textures.&nbsp;<\/li>\n\n\n\n<li><strong>Encouraging positive mealtime experiences <\/strong>can<strong> <\/strong>reduce the chance of your child developing an overreaction to particular types of due to their taste, feel, smell or temperature.<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n\n\n\n\n<p>It is also important that your child:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Moves from non-oral feeding to oral feeding (by mouth) as quickly as possible.<\/li>\n\n\n\n<li>Is examined for difficulties swallowing and for gastro-oesophageal reflux \u2013 acid from the stomach leaking up into the oesophagus (gullet).<\/li>\n<\/ul>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Support from Sense<\/h2>\n\n\n\n<p>We&#8217;re here for disabled people with complex needs and their families all over the UK. Get in touch to find out more about the services we offer.<\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/information-and-advice-service\/\" class=\"button  button--primary\">Find out more<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n\n\n\n<p>This content was last reviewed in July 2023. 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