{"id":3891,"date":"2022-04-12T15:29:08","date_gmt":"2022-04-12T14:29:08","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=3891"},"modified":"2026-04-29T11:02:57","modified_gmt":"2026-04-29T10:02:57","slug":"what-is-charge-syndrome","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/what-is-charge-syndrome\/","title":{"rendered":"What is CHARGE syndrome?"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page tells you all about CHARGE syndrome, including the origin of the name, the physical symptoms and behavioural signs.<\/p>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10  align-right  size-medium\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Get our emails in your inbox<\/h2>\n\n\n\n<p>Join over 87,000 others, and be part of the movement driving change for disabled people. <\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/get-our-emails-in-your-inbox\/\" class=\"button  button--primary\">Sign up now<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n\n\n\n<p>Although CHARGE is a complicated condition, Sense knows many children and adults who, with the right support, have been able to overcome the barriers they faced and lead full and meaningful lives.&nbsp;<\/p>\n\n\n\n<p>On this page:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li><a href=\"#what\">What is CHARGE syndrome?<\/a><\/li>\n\n\n\n<li><a href=\"#common\">How common is CHARGE syndrome?<\/a><\/li>\n\n\n\n<li><a href=\"#why\">Why is it called CHARGE syndrome?<\/a><\/li>\n\n\n\n<li><a href=\"#symptoms\">Other symptoms of CHARGE syndrome<\/a><\/li>\n\n\n\n<li><a href=\"#behaviour\">Behavioural signs<\/a><\/li>\n\n\n\n<li><a href=\"#life\">What is the life span for someone with CHARGE Syndrome?\u202f<\/a><\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"what\">What is CHARGE syndrome?<\/h2>\n\n\n\n<p>CHARGE syndrome is a genetic syndrome with a known pattern of features.&nbsp; It&#8217;s a complex condition, involving physical disabilities that vary from person to person.<\/p>\n\n\n\n<p>The early years can be medically very challenging. Babies with CHARGE syndrome may need to spend months in hospital.<\/p>\n\n\n\n<p>Some features of CHARGE are not always present at birth.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"common\">How common is CHARGE syndrome?<\/h2>\n\n\n\n<p>CHARGE syndrome occurs in approximately one in 10,000-15,000 births worldwide.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"why\">Why is it called CHARGE syndrome?<\/h2>\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<p>The name CHARGE was first used in 1981 as an easy way to refer to a range of symptoms commonly seen in a number of children:&nbsp;&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><strong>C<\/strong>oloboma (an eye condition).<\/li>\n\n\n\n<li><strong>H<\/strong>eart defects.&nbsp;<\/li>\n\n\n\n<li><strong>A<\/strong>tresia choanae (choanal atresia; nasal passages blocked by bone or tissue). <\/li>\n\n\n\n<li><strong>R<\/strong>etardation (delay) of growth and\/or development.&nbsp;<\/li>\n\n\n\n<li><strong>G<\/strong>enital abnormalities.&nbsp;<\/li>\n\n\n\n<li><strong>E<\/strong>ar abnormalities.&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>Although the name CHARGE is still used, it is now known that the condition has many more symptoms \u2013\u202fwith more than 120 now identified.&nbsp;<\/p>\n\n\n\n<p>Not everyone with the condition will develop all of these symptoms.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Coloboma\">Coloboma<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>A coloboma is fissure (crack) in the eye, usually at the back.&nbsp;<\/li>\n\n\n\n<li>It affects about\u202f70\u201390% of people with CHARGE.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Atresia choanae (choanal atresia)<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>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 (atresia).&nbsp;<\/li>\n\n\n\n<li>This affects 43% of people with CHARGE.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Retardation (delay) of growth and\/or intellectual development<\/strong>&nbsp;<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Around 75% of children with CHARGE are shorter and weigh less than average.<\/li>\n\n\n\n<li>Delayed physical development is due to a lack of growth hormones and\/or feeding difficulty.&nbsp;<\/li>\n\n\n\n<li>70% of people with CHARGE have lower IQs, ranging from nearly average to severe <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/learning-disabilities\/\">intellectual disability<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Genital abnormalities<\/h2>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Underdeveloped genitals are a tell-tale sign of CHARGE in males, but not so much in females.&nbsp;<\/li>\n\n\n\n<li>80\u201390% of affected males have underdeveloped genitals (small penis).&nbsp;<\/li>\n\n\n\n<li>15\u201325% of affected females have underdeveloped genitals (small labia).&nbsp;<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Ear abnormalities<\/h2>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>86% of affected people have visible deformities of the outer ear, such as floppy ears or missing earholes.&nbsp;<\/li>\n\n\n\n<li>60\u201390% of affected people have inner ear problems, such as abnormal\u202fsemicircular canals\u202for nerve defects, which may result in hearing loss, balance problems, fluid in the ears and frequent ear infections.&nbsp;<\/li>\n\n\n\n<li>97% of people have hearing loss.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"symptoms\"><strong>Other symptoms of CHARGE syndrome<\/strong>&nbsp;<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Cranial nerve abnormalities<\/strong>&nbsp;<\/h3>\n\n\n\n<p>The cranial nerves are a set of 12 paired nerves in the back of the brain. Cranial nerve abnormalities in people with CHARGE syndrome include:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Total loss or reduced sense of smell (anosmia): 90\u2013100% of people.&nbsp;<\/li>\n\n\n\n<li>Swallowing difficulties: 60\u201380% of people.&nbsp;<\/li>\n\n\n\n<li>One-sided facial weakness or paralysis (facial palsy): 50\u201390% of people.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Development<\/h3>\n\n\n\n<p>Lack of\u202fpuberty\u202fwithout hormone treatment: 80\u201399% of people.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Eyes<\/h3>\n\n\n\n<p>One or both eyes may also be too small (microphthalmia) or missing (anophthalmia).<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"Face\">Face<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Arched eyebrows.&nbsp;<\/li>\n\n\n\n<li>Asymmetrical (unbalanced), square face.&nbsp;<\/li>\n\n\n\n<li>Flattened cheekbones.&nbsp;<\/li>\n\n\n\n<li>Large eyes.&nbsp;<\/li>\n\n\n\n<li>Low-set, cupped ears.\u202f&nbsp;<\/li>\n\n\n\n<li>Occasional droopy eyelids.&nbsp;<\/li>\n\n\n\n<li>Prominent bridge on the nose.\u202f&nbsp;<\/li>\n\n\n\n<li>Prominent forehead.&nbsp;<\/li>\n\n\n\n<li>Undersized jaw.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Hands<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>\u2018Hockey-stick\u2019 crease in the palm: a thick crease across the palm close to the fingers that widens like the end of a hockey stick.&nbsp;<\/li>\n\n\n\n<li>Square palm.&nbsp;<\/li>\n\n\n\n<li>Short fingers (symbrachydactyly, brachydactyly).<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Heart<\/h3>\n\n\n\n<p>Tetralogy of Fallot\u202f(the mixing of oxygen-poor blood with the oxygen-rich blood being pumped out of the heart and into the blood vessels).<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Mouth and throat<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Cleft lip or cleft palate.<\/li>\n\n\n\n<li>Hole between the trachea (windpipe) and\u202foesophagus (gullet)\u202f(trachea-oesophageal fistula). <\/li>\n\n\n\n<li>Small mouth.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Muscle<\/h3>\n\n\n\n<p>Low muscle tone.\u202f&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Neck and shoulders<\/h3>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Sloping shoulders.&nbsp;<\/li>\n\n\n\n<li>Short neck.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Spine<\/h3>\n\n\n\n<p>Scoliosis (curved spine)<strong>.<\/strong><\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"behaviour\">Behavioural signs<\/h2>\n\n\n\n<p>Children with CHARGE syndrome often display behaviours that challenge.&nbsp; This could include:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Repetitive behaviour \u2013 biting, pacing or talking.&nbsp;<\/li>\n\n\n\n<li>Sensation-seeking \u2013 for example, wanting bright colours or strongly flavoured food.&nbsp;<\/li>\n\n\n\n<li>Difficulty using self-control, especially when stressed or overwhelmed.&nbsp;<\/li>\n\n\n\n<li>Difficulty shifting attention and moving on to new things.&nbsp;<\/li>\n\n\n\n<li>Difficulty with focus and concentration.&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>They could also be diagnosed with other conditions, like <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/autism\/\">autism spectrum disorder<\/a> or Tourette&#8217;s. <\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"life\">What is the life span for someone with CHARGE syndrome?<\/h2>\n\n\n\n<p>The early years are very challenging and there is an increased risk to mortality.&nbsp;<\/p>\n\n\n\n<p>However, whilst they may continue to be fragile, the life span of people with CHARGE syndrome can be normal.&nbsp;<\/p>\n\n\n\n<p>Children diagnosed with CHARGE syndrome have a 70% chance of being alive five years after diagnosis.&nbsp;<\/p>\n\n\n\n<p>As people with CHARGE get older, causes of death can include infection, accidentally inhaling fluids or food (aspiration), and sleep apnoea.&nbsp;<\/p>\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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