The impact of meningitis on children and their siblings

As the Support and Membership Manager here at Meningitis Research Foundation, I have supported many families dealing with trauma, loss and the after-effects of the family unit changing forever. I am also a parent and understand how challenging dealing with your own emotions can be, whilst supporting your children through theirs. To mark Children’s Mental Health Week (1-7 February 2021), I would like to bring this subject to light and discuss the support available for both you and your children.

Any family affected by meningitis, septicaemia (sepsis), or both will know what a heartbreaking and serious disease this can be. Whether you have sadly lost a child, or you are all living with life-changing after-effects, it is important to know that you are not alone and that there is help available.
As parents or guardians, the natural urge is to protect, so to watch your child endure meningitis is extremely difficult. You may find that supporting their siblings through the disease is also just as tough.

You will hear people say that children are resilient, and they are. We are constantly amazed by the way that children overcome disease and obstacles put in their way. But they also hurt and feel, and this needs understanding and support.

Children may not want to talk to their friends for fear of them not understanding, telling other people at school, or being bullied. They may also be reluctant to talk to people in their household, because they do not want to upset anybody more than they already are.
We know that children deal with things differently than adults. Experts believe our brains do not fully mature until our early 20s, and adults are able to rationalise thoughts and emotions through the frontal vortex (the part of the brain that enables us to think about the effects of the decisions we make). For a child dealing a sudden upheaval – whether it that’s grief, disability or trauma – it is difficult for them to express how they feel and to rationalise this.

It is important to look for signs that your child is not themselves and to reach out for help and support.

You may notice your child:
  • Bedwetting or soiling
  • Behaving differently, becoming aggressive to you or other family members and easily upset
  • Withdrawn or spending more time in their room, not wanting to see friends or family in the usual way
  • Neglecting their hygiene and self-care
  • Changes to the frequency that they eat food
  • Self harming or feelings of wanting to end their life

It is very important that if you are worried about your child’s safety, you must reach out and tell a medical provider as a matter of urgency. Your family will not be judged and there is immediate help available. To do this you can call your GP surgery or NHS111 and explain exactly what your concerns are. Alternatively, you can call our dedicated helpline and we can support you to do this step by step.
As children, the first experience of bereavement may be losing a family pet, or an older relative such as a grandparent. It is a sad but natural process of growing older and prepares children for loss. With support within the family they learn the complexities of grieving process, the emotions that come with losing someone, and the resilience that comes moving forward.

To lose a sibling is a devastating event for anybody, especially a young person. Our family unit is what makes us feel safe. We all have our roles in the family and when someone dies, there is a hole that is left. Children often feel unsettled, confused and sometimes carry unnecessary guilt that their sibling passed away.
It can be incredibly difficult to support a child when you are dealing with your own grief. It is important that you reach out for support. Dedicated rief counselling support services can help.

Limb loss
Every 2 years, we hold an event called ‘Pushing The Boundaries: Life After Limb Loss’, where we invite families to come together following the devastating effects of a child living with limb loss. For some it is the first time that a sibling of the child has seen other children like their brother or sister, and this helps reduce a feeling of being ‘different’, or isolated. We also discuss the medical, financial and practical problems that can affect a family. Moving home, not being able to do the things that you once did as a family, and the care that a child now needs, can affect not only the child but their siblings.

We understand this and we can help.

Brain injury and mental health changes
When a child is poorly with meningitis, the infection can cause lasting damage to the brain. Your child may have been diagnosed with an acquired brain injury, or awaiting neurological tests for this. Bringing a child home from hospital that has a brain injury can be extremely traumatic for the whole family. They may react to things differently, need extra care, and they may not be able to converse in the way they did, or laugh and play in the same way. This may not only affect the child themselves, but also their siblings who used to enjoy their brother or sisters sense of humour, or play times.

As a family this can be challenging, but as time progresses and families adapt, it is important to remember that their new behaviours and capabilities will once again fit in to the family roles as they did before.
Some children who have been poorly or spent time in hospital may become depressed and withdrawn, suffering from anxiety or developing PTSD like symptoms. They may not like to visit a doctor or a hospital for an appointment, and become scared of needles and medical professionals. This is completely normal, and something that our dedicated helpline can support with.

Lastly, it is important that you remember that as a parent, you must care for yourself in order to care for others. It is ok to feel scared or confused, and as a parent myself, I understand just how hard it is to watch your child face difficulties you never thought would affect your family.  You are not alone. If you need support, guidance or just a friendly ear, please reach out to us.
Please call 080 8800 3344 or email if you have any queries, concerns, or if you just need to talk. Other helpful organisations include:

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Ensure our support services are there for people affected by meningitis
Ensure our support services are there for people affected by meningitis
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Cat Shehu
Support and Membership Manager

My name is Cat, I manage the Support service and Membership here at MRF.

My professional background involves Complex mental health, Safeguarding and providing a safe and consistent Support service to anyone who needs to access it. I am immensely proud of the support that we have delivered to so many people over the last 30 years. I am very lucky to meet some amazing members, ambassadors and people who reach out to our expertise in this awful disease and my passion is to continue to make knowledgeable, inclusive support available to anyone who needs it. Outside of MRF I am a mum, and I love to travel and explore new countries. If you have any questions or need support please contact me.

Tel: 0333 405 6267