{"id":6261,"date":"2022-04-21T11:55:18","date_gmt":"2022-04-21T10:55:18","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=6261"},"modified":"2026-04-22T11:47:31","modified_gmt":"2026-04-22T10:47:31","slug":"charge-ear-hearing-loss-treatments","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-ear-hearing-loss-treatments\/","title":{"rendered":"CHARGE syndrome: CHARGE ear, hearing loss and treatments"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page covers hearing loss resulting from CHARGE ear and relevant treatments.<\/p>\n\n\n\n<p>It includes a brief overview of the parts of the ear affected, the features of CHARGE ear, tests you can expect your child to have, and hearing aids and cochlear implants.<\/p>\n\n\n\n<p>You\u2019ll also find links to more detailed information on some of the tests and symptoms included here.<\/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=\"#charge-ear\">CHARGE ear<\/a><\/li>\n\n\n\n<li><a href=\"#tests\">What tests should I expect my child to have?<\/a><\/li>\n\n\n\n<li><a href=\"#hearing\">Hearing aids<\/a><\/li>\n\n\n\n<li><a href=\"#cochlear\">Cochlear implants<\/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=\"charge-ear\"><strong>CHARGE ear<\/strong><\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"parts\"><strong>Parts of the ear<\/strong><\/h3>\n\n\n\n<p>CHARGE syndrome can affect various parts of the ear, including:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Pinna \u2013&nbsp;the outer ear.<\/li>\n\n\n\n<li>Earlobe or lobe \u2013&nbsp;the soft, fleshy part of the outer ear.<\/li>\n\n\n\n<li>Helix \u2013&nbsp;the outer rim of the ear.<\/li>\n\n\n\n<li>Eardrum \u2013 a thin piece of skin-like tissue that separates the outer ear from the middle ear.<\/li>\n\n\n\n<li>The middle ear \u2013 the part connected to the back of the nose and throat.<\/li>\n\n\n\n<li>Ossicles \u2013 three small bones in the middle ear that send sound from the eardrum to the inner ear.<\/li>\n\n\n\n<li>Inner ear \u2013 the part mainly responsible for detecting sound and maintaining balance.<\/li>\n\n\n\n<li>Eustachian tube \u2013 a small passageway connecting the middle ear to the throat.<\/li>\n\n\n\n<li>Cochlea \u2013 hollow, spiral-shaped bone in the inner ear.<\/li>\n\n\n\n<li>Cochlear nerve, also known as the auditory nerve \u2013 responsible for sending sound to the brain.<\/li>\n\n\n\n<li>Semicircular canals \u2013 three tiny, fluid-filled tubes in your inner ear that help you keep your balance.<\/li>\n<\/ul>\n\n\n\n<div class=\"wp-block  slab    is-style-textured-primary-tint-10  align-full\">\n  <div class=\"wrap\">  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\"><strong>Features of CHARGE ear<\/strong><\/h3>\n\n\n\n<p>Features of CHARGE ear include:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>The <strong>pinna<\/strong> may be an unusual shape, with small <strong>lobes<\/strong> and a misshapen <strong>helix<\/strong>.<\/li>\n\n\n\n<li><strong>Middle ear <\/strong>problems. The <strong>ossicles<\/strong> may be incomplete or stuck together.<\/li>\n\n\n\n<li>Regular<strong> <\/strong>ear infections or \u201cglue ear\u201d due to poor ventilation of the middle ear because the <strong>eustachian tube<\/strong> doesn\u2019t work properly.<\/li>\n\n\n\n<li>The <strong>semicircular canals<\/strong> may be missing completely, affecting balance. This is a key feature for a diagnosis of CHARGE syndrome.<\/li>\n\n\n\n<li>The <strong>cochlea <\/strong>may be incomplete (cochlear dysplasia).<\/li>\n\n\n\n<li>The <strong>cochlea<\/strong> may have a single cavity (space), instead of the usual spiral shape. (Mondini deformity).<\/li>\n\n\n\n<li>The <strong>cochlear nerve<\/strong> may be thin (hypoplastic) or missing completely (cochlear nerve aplasia).<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"tests\"><strong>What tests should I expect my child to have?<\/strong><\/h2>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"scans\"><strong>Scans<\/strong><\/h3>\n\n\n\n<p>If your child has been diagnosed with CHARGE syndrome, or it\u2019s thought they have hearing loss, they should have:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>A computed tomography (CT) scan. <\/li>\n\n\n\n<li>A magnetic resonance imaging (MRI) scan, where possible. <\/li>\n<\/ul>\n\n\n\n<p>An MRI scan is particularly important if it\u2019s thought your child has profound hearing loss (total lack of hearing) or that their <strong>auditory nerve<\/strong> is thin or missing.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"audiometric\"><strong>Audiometric testing&nbsp;<\/strong><\/h3>\n\n\n\n<p>If your child has a misshapen <strong>middle ear<\/strong>, they may have moderate hearing loss, which means they can\u2019t hear sounds below 50 decibels (dB).<\/p>\n\n\n\n<p>If they also have a misshapen <strong>cochlea<\/strong>, they may have inner ear hear hearing loss (sensorineural hearing loss).&nbsp;<\/p>\n\n\n\n<p>As a result of this damage to the <strong>middle ear<\/strong> and the <strong>inner ear<\/strong>, they may have mixed hearing loss \u2013 ranging from moderate to profound hearing loss.<\/p>\n\n\n\n<p>They should then have an audiometric test.<\/p>\n\n\n\n<p>Audiometric testing is a type of hearing test that measures how someone hears different sounds, pitches or frequencies. <\/p>\n\n\n\n<p>Audiometric testing should take into account:<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-primary-bullets\">\n<li>Your child\u2019s age.<\/li>\n\n\n\n<li>Their developmental age \u2013&nbsp;how well are they developed physically and mentally for their age.<\/li>\n\n\n\n<li>Any other sensory difficulties they may have.<\/li>\n\n\n\n<li>Any motor difficulties \u2013 anything that affects their ability to move.<\/li>\n<\/ul>\n\n\n\n<p>A number of audiometric tests may be needed over a period of time, as well as comments from parents and\/or carers about what they\u2019ve noticed in the child\u2019s behaviour.<\/p>\n\n\n\n<p>To get the most accurate result, your child may have an auditory brainstem response (ABR) test under general anaesthetic.<\/p>\n\n\n\n<p>Where possible, the results of an ABR test will be confirmed by behavioural tests \u2013 listening games that test how your fully awake child responds to sounds.&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"hearing\"><strong>Hearing aids<\/strong><\/h3>\n\n\n\n<p>The results of an ABR test can help to decide whether your child should have hearing aids and which type.<\/p>\n\n\n\n<p>If your child\u2019s hearing loss is due to a misshapen <strong>middle ear<\/strong>, or they have moderate to severe mixed hearing loss, the type of hearing aid will depend on which features of CHARGE ear they have.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology-mobility-aids-and-devices\/assistive-technology-for-people-with-hearing-loss\/hearing-aids\/\">Find out more about hearing aids.<\/a><\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-secondary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<h4 class=\"wp-block-heading\"><strong>Bone-anchored hearing aid<\/strong><\/h4>\n\n\n\n<p>If the <strong>pinna<\/strong> is severely misshapen, or there are chronic <strong>middle ear<\/strong> problems, it may be difficult to fit standard air-conduction hearing aids.&nbsp;<\/p>\n\n\n\n<p>So, your child may be fitted with a hearing implant, which sends sound directly to the inner ear through the bones of their skull.&nbsp;<\/p>\n\n\n\n<p>Increasingly, a bone-anchored hearing aid (BAHA) is offered. Usually, a soft-band version is tried first followed later by a device implanted surgically, if appropriate. <\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology-mobility-aids-and-devices\/assistive-technology-for-people-with-hearing-loss\/hearing-implants\/\">Read more about the different types of hearing implants.<\/a><\/p>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h3 class=\"wp-block-heading\" id=\"cochlear\"><strong>Cochlear implants<\/strong><\/h3>\n\n\n\n<p>Cochlear implants use electrodes to stimulate nerve endings in the <strong>cochlea<\/strong> to send sound to the brain along the <strong>cochlear nerve<\/strong>.<\/p>\n\n\n\n<p>Children with CHARGE syndrome have to be assessed very carefully to see if cochlear implants are right for them.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology-mobility-aids-and-devices\/assistive-technology-for-people-with-hearing-loss\/hearing-implants\/\">Read more about cochlear implants.<\/a> <\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"risks\"><strong>Risks and follow-up<\/strong><\/h4>\n\n\n\n<p>With cochlear implants, there is a risk that the facial nerve could be damaged during surgery, possibly permanently.<\/p>\n\n\n\n<p>Your child\u2019s surgeon should discuss this with you before surgery.<\/p>\n\n\n\n<p>For children with CHARGE syndrome, follow-up after surgery may be more intensive and time-consuming than it would be for other children.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"outcomes\"><strong>Outcomes<\/strong><\/h4>\n\n\n\n<p>If your child has a misshapen <strong>cochlea<\/strong> or a thin <strong>cochlear nerve<\/strong>, cochlear implants may not be as effective as you might expect.<\/p>\n\n\n\n<p>This is because the smaller number of nerve impulses reduces the amount of sound that can be sent to the brain.<\/p>\n\n\n\n<p>With cochlear implants, your child may develop awareness of sound, including speech, but to the same level as children who do not have CHARGE ear.<\/p>\n\n\n\n<p>Also, if your child has other <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/conditions\/charge-syndrome\/charge-syndrome-sensory-integration-problems\/\">sensory difficulties<\/a>, this will also have an impact on the effectiveness of cochlear implants.<\/p>\n\n\n\n<p>That said, many parents have found that cochlear implants can help their child to feel more connected to the world, to have greater awareness of life around them and be more willing to communicate.<\/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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