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Down's syndrome

Photo: All children with Down's syndrome should have their hearing tested regularly

Many children with Down’s syndrome have some degree of hearing loss. Often this is caused by glue ear (a build-up of fluid in the middle ear) but there can be other causes.

It’s important to find out if your child has a hearing loss as early as possible because deafness that isn’t managed or diagnosed can have a negative impact on a child’s social and language development, especially if the child also has a learning disability.

I’m worried about my child’s hearing, what should I do?

All children with Down’s syndrome should have their hearing tested regularly. If you’re worried about your child’s hearing you should make an appointment with your family doctor (GP) who will refer your child to your local audiology service for hearing tests.

If your child has already been diagnosed with a hearing loss then depending on the type or degree of deafness they might have their hearing tested every three to six months when they’re young. Older children might have their hearing tested every year. If you feel your child’s hearing may have changed between appointments ask for an earlier appointment.

The Down’s Syndrome Medical Interest Group publishes guidelines for professionals on how often children with Down's syndrome should have their hearing tested.

Visit our section on hearing tests to find information and resources that explain the different types of tests used to find out your child’s level of hearing.

My child has glue ear, what treatments are available?

Around 60–70% of children with Down’s syndrome have a conductive hearing loss (when sound can’t pass properly to the inner ear) caused by glue ear.

Most children who have glue ear grow out of it by about the age of eight. However, children with Down’s syndrome often get glue ear before the age of one and because their eustachian tubes (the tube that connects the throat and middle ear) stay small throughout their life, they may have recurrent episodes to the age of 10 or even longer.

For this reason it’s recommended that you seek treatment for your child's glue ear. Depending on your child and the degree of deafness caused by the glue ear, several options are available.

Antibiotics, antihistamines and decongestant medicines

If glue ear is caused by an ear infection, or repeated infections of the breathing passages, your doctor may prescribe a six-week course of low-dose antibiotics. This may be combined with a decongestant medicine to help dry up the fluid. Some children may need a further course of antibiotics the next time they get an infection.

Using decongestant nose drops isn’t recommended as long-term use can lead to too much mucus being produced.

Evidence suggests that antihistamines aren’t effective in managing glue ear in children with Down’s syndrome.

Grommet surgery

Grommets are tiny plastic tubes, inserted into the ear drum, which help air to circulate in the middle ear to prevent fluid from building up. If glue ear doesn’t respond to antibiotics or clear up by itself, an operation to clear the fluid from the middle ear and insert a grommet can be recommended.

Grommet operations can be very difficult in young children with Down’s syndrome because the ear canal can be too narrow for the surgeon to operate. In this situation hearing aids may be helpful until the child is older and the operation to insert grommets can be performed.

For about 1 in 5 children without Down’s syndrome who have had grommets, glue ear comes back again. This is much more likely in children with Down’s syndrome but, because the glue is more sticky, the grommet itself often becomes blocked and the improvement in hearing may be short-lived. This may mean that further grommets need to be fitted.

It’s possible to put grommets in about three times. However, repeated grommet operations aren’t recommended as every time one is put in the eardrum is punctured and when it falls out a scar is left. Because of this, some Ear, Nose and Throat (ENT) doctors recommend hearing aids as the preferred treatment for glue ear in children with Down’s syndrome.

Sometimes removing the adenoids (fleshy pads at the back of the nose and throat area) is also recommended. If the adenoids enlarge they may block the eustachian tubes. Removing them means glue ear is less likely to return when the grommets have fallen out.

If your child is having grommet surgery you may find our tips on preparing your child for surgery helpful.

Other hearing issues in children with Down’s syndrome

Glue ear is the most common cause of hearing loss in children with Down’s syndrome but it can be caused by other things. For example about 10–15% of children with Down’s syndrome have sensorineural deafness.

It's important to look out for any issues that can affect your child's hearing such as:

Earwax

Wax is a common problem for children and adults with Down’s syndrome because it easily blocks the narrow ear canals and can cause hearing difficulty. For children who use hearing aids, wax can cause feedback (a whistling noise). You can buy ear drops for wax removal but when the ear canal is very narrow, it can easily become even more blocked by the drops and wax combining. It’s a good idea to ask your audiologist to check your child’s ears every four to six months and arrange for wax to be removed by your Ear, Nose and Throat (ENT) doctor if necessary.

Hyperacusis

Hyperacusis is sensitivity to noise. Studies have shown that a few children with Down’s syndrome are particularly sensitive to noise. These children may be distressed in some situations especially when there is a lot of background noise. If this seems to be a problem, discuss this with your child’s audiologist. The British Tinnitus Association has lots more information about hyperacusis.

How can I make communication easier?

Developing good communication skills that fit with your child’s and family’s needs is very important.

When your child is a baby, you will be communicating by using facial expressions, body language, gestures and tone of voice to show love and let your child know that you are there. Because speech development may be delayed in children with Down’s syndrome it can be very helpful for families to learn some sign-based language to help their child communicate. Learning and using sign-based languages early on will not prevent speech from developing as long as normal spoken language and signs are used together.

Depending on their age, ability and level of deafness, children with Down’s syndrome may use spoken language, makaton (a language programme using signs and symbols, often used by people with communication and learning difficulties), sign language or a combination of these.

It’s important to remember that you don’t have to make a choice for life. The communication approach you use may change as you learn more about what your child needs.

References

This information has been produced with the help of The Down's Syndrome Medical Interest Group (UK) and The Down's Syndrome Association. We are grateful to Mr Patrick Sheehan, Consultant Paediatric Otolarynologist, and the Audiology Department at Royal Manchester Children's Hospital.