We posted a piece on social media on 3 May about three-year-old Isaac Onyeka who very sadly died last year whilst receiving emergency treatment for sepsis.
We subsequently received a number of enquiries about sepsis in adults who have Down’s syndrome.
Our Medical Advisers from the Down Syndrome Medical Interest Group UK and Ireland have written the following information:
Sepsis occurs when the body’s response to an infection starts to attack the body itself, affecting the way that organs, such as the heart, lungs, liver or kidneys, work. Depending on which organs are involved, there may be problems with the circulation (such as cold, mottled skin or a fast heart rate), shortness of breath, problems passing urine, or confusion, agitation or drowsiness, or a combination of these.
The type of infection might be a virus, bacteria, or fungus. Sometimes the type of infection makes sepsis more likely to happen. Sometimes it’s something to do with the person themselves that makes sepsis more likely to happen.
People who have Down’s syndrome are more likely to have other health problems (such as heart problems, breathing problems, digestive problems, etc) and this can make sepsis more likely.
People who have Down’s syndrome may also have an immune system that is less efficient than it should be. This can mean that infections are more common and that sepsis is more likely.
It can be very difficult to tell if someone has sepsis.
Some clues include a fast heart rate, fast breathing rate, being confused or drowsy, or passing less urine than usual.
‘Soft signs’ might be noticed by family or carers. These are different for every person and might include things like not wanting to eat a favourite food, not wanting to watch a favourite TV programme, or being quieter than usual.
It can be difficult for doctors to tell if someone has sepsis sometimes, too. Blood tests might help, but there is no specific test that can confirm or rule out sepsis. Often doctors will balance up whether someone is likely to have sepsis or not, and they might start treatment before they are sure.
It can be more difficult for doctors to tell if a person who has Down’s syndrome has sepsis than it might be to diagnose it in people who do not have Down’s syndrome.
This can be because of difficulties the doctor might have in understanding the person, or difficulties the person has in understanding the doctor. The person might not know how important their symptoms are, when to tell someone or how to explain how they feel. There is also the problem of “diagnostic overshadowing”, when a doctor assumes that symptoms are due to Down’s syndrome, or another underlying condition, rather than an infection or sepsis.
The treatment of sepsis often involves antibiotics and may also involve treatments to help with organ function, such as intravenous fluids or oxygen. Sometimes a person might need help from an intensive care or high dependency unit, but this isn’t always the case. It depends on the type of infection and the amount the organs have been affected.
If you are worried someone might have sepsis, it is important to explain symptoms clearly to a healthcare professional, including any ‘soft signs’ that you have noticed. Don’t be afraid to ask if it could be sepsis and to remind them that people who have Down’s syndrome are at increased risk.
To help prevent sepsis, keeping up to date with vaccinations (including the annual flu vaccine, and any additional advised vaccines depending on age or associated illness e.g. Covid, pneumonia or shingles) is important. It can also help to avoid contact with people who are unwell, and to follow infection control advice, such as washing hands well after using the toilet and before eating, keeping any wounds covered and making sure to seek help if they appear infected.
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