Sepsis is a serious condition where the body has a life-threatening inflammatory response to an infection that can damage its own tissues and organs. While many children and young adults recover fully after sepsis, about one-third of survivors experience long-term impacts known as Post-Sepsis Syndrome.
What is Post-Sepsis Syndrome?
Post-Sepsis Syndrome (PSS) refers to ongoing physical, cognitive, psychological, emotional, and behavioural challenges that some people face after recovering from sepsis. Children with severe cases of sepsis, particularly those with septic shock or multiple organ complications, are more likely to experience these long-term effects.
Every child’s journey is unique; some may face several challenges, while others may not encounter any. As parents and carers navigate these complexities, it’s important to remember that support is available, and seeking help can lead to a smoother path to recovery for both children and their families.
Cognitive and social impacts after sepsis
Children who have had sepsis sometimes face ongoing challenges with their thinking, attention to tasks, learning, remembering, and making decisions. This can lead to noticeable changes in their school performance as they may find it difficult to stay focused, to understand information and to complete their schoolwork.
You may also notice changes in your child’s social interactions. This may be due to several factors including time away from friends, uncertainty about how to re-engage or how to explain what they have experienced and feeling “different” from their friends. Additionally, physical effects such as increased fatigue may impact their ability to participate in usual social activities.
Tips for managing cognitive and social impacts after sepsis:
- Maintain open communication with your child’s school
Inform your child’s school team about their sepsis diagnosis, discuss any ongoing challenges and consider strategies to support your child in the schooling environment. - Support your child’s re-engagement with their friends
Help your child reconnect with their friends by normalising and validating their feelings about any possible changes they are experiencing and by creating opportunities for quality time together. Encourage open communication between your child and their friends and consider speaking with their parents about your child’s behaviour so they in turn can support their own child.
Emotional and psychological impacts after sepsis
While all care is taken to ensure every child has the best possible hospital journey, it is common for children with sepsis to experience some level of stress during their treatment and stay. This stress response can last for up to a year after they leave hospital and can have significant emotional impacts on the child and their family.
Many children will experience common trauma symptoms, like emotional distress, trouble sleeping, feeling tired, feeling tense or upset, having flashbacks of what happened, or changes in behaviour (avoidance of activities or withdrawing from others). Some children may also develop depression or anxiety.
For most children, support from parents and other family members, getting back to a routine, and doing things they enjoy can help in reducing the frequency and severity of stress and trauma symptoms.
However, for one in five children with sepsis, these symptoms may continue for more than 6 to 12 months post discharge. In these cases, this would be defined as Post Traumatic Stress Disorder (PTSD).
It is also very common for parents and family members to be deeply affected by their child’s sepsis diagnosis and hospital stay. Many experience long periods of moderate to high distress, trauma and PTSD after their child comes home. This may include symptoms such as headaches, numbness, irritability, low energy and changes in sleeping and eating patterns.
Tips for managing psychological and emotional impacts after sepsis:
- Create a self-care plan
When we experience a lot of stress and don’t take time to care for ourselves, the stress can build up and start to affect our everyday lives. But if we regularly practice self-care, we can manage additional stress. It’s like building your own “self-care armor” to protect yourself during challenging times. - Seek professional support
For many people, support from family and friends and actively engaging in self-care, will be enough to manage these emotional impacts. But if you or your child have been feeling ongoing stress or trauma symptoms for more than six months, or if these impacts are making it difficult for you to engage in everyday activities, it may be time to seek extra support. community Psychologist or Mental Health Accredited Social Worker can help.
Physical impacts after sepsis
Children diagnosed with sepsis often take a lot of time (up to 2 years) to recover back to their usual level of health and functioning. Children diagnosed with severe sepsis and septic shock are more likely to be readmitted to hospital within 12 months of discharge and to need regular check-ups and treatment through General Practitioners (GPs) and community health therapists.
The range of physical impacts are extremely varied and depend on where the infection started. For example, if the infection was in the lungs, a child may experience breathing problems or get sick more easily.
Physical symptoms that are commonly experienced by most children diagnosed with sepsis include headaches and other pain, tiredness, trouble sleeping, changes in appetite, and changes in muscle tone or weakness.
Top tips for managing physical impacts after sepsis:
- Allow time to heal
Focus on the basics such as getting plenty of sleep, eating healthy food and having time to rest and recover, being aware that this may take up to 2 years. - Talk about feelings
Give your child a safe place to talk about how they feel physically and emotionally, especially their feelings about being unable to do things that they used to enjoy doing. - Encourage gentle activity
Help your child return to fun and familiar activities, even if for a shorter period of time. - Plan a slow return to activities, including school, social and sporting activities.
- Watch for signs of tiredness
Fatigue can sometimes show as challenging behaviours. Plan quiet times for rest throughout the day. - Keep others informed
Speak with your child’s teacher or day care provider about the physical and emotional impacts of sepsis so that they can better understand and support your child. - Connect with a GP or key medical specialist
Regular check-ups, even when your child is well, can help monitor recovery, note any signs of concern early and offer appropriate care.
Seeking support
If you suspect your child is experiencing long-term effects of sepsis, consult with their GP, specialist, teacher, or therapist.
Feel empowered to share information about sepsis and Post Sepsis Syndrome with your healthcare team to ensure any questions or concerns are appropriately addressed.
It can also be helpful to seek support from your family and friends. Share your experiences and concerns with them to increase their awareness and understanding of the long term impacts of sepsis.
Managing these long-term effects can be challenging, but you’re not alone. Consider connecting with other parents or carers through attending a Queensland Paediatric Sepsis Program Family Event or registering for our Peer Mentor Program, where mentors can offer understanding and support.
Our bereaved parents and carers
Whilst much of this article discusses the long-term effects on children who survive sepsis, and their families, it is important to also recognise the long-term impacts for those who are bereaved due to sepsis.
While you may be able to relate to some of the experiences explored in this article, you may feel that your journey is more about attempting to navigate this new world that you never expected.