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Support for families and carers of children

Necrotising Fasciitis can be a life changing infection not just for an infected child, but also for their family or carer. Here, Lucy, our Parent & Child Support liaison provides insights and advice following her experience of NF with her son Frankie.

What is Necrotising Fasciitis

Pronounced “necro-tising fasc-ii-itis” or NF for short. The term “Necrotising Fasciitis” comes from the  words “necrosis” and “fascia”. “Necrosis” means death of a portion of tissue, and “fascia” is the name  given to the sheets of fibrous tissue that cover and connect our muscles. NF is an infection which causes  the fascia to be destroyed. The bacteria releases toxins that destroy nearby tissue. 

What causes Necrotising Fasciitis? 

The disease is caused by bacteria and although there are a variety of bacteria that can cause NF, the  leading cause is from a bacteria known as Group A Streptococcus (you may hear this referred to as  Group A Strep or Strep Pyogenes). The bacteria Group A Strep can live on the skin or in the throat but if  it invades the body via the bloodstream, this can lead to a variety of different illnesses. NF Is described  by Public Health England, as “a serious complication of a Group A Strep infection. A child could develop  NF after surgery, chicken pox or even from something as simple as a graze to the skin. Essentially any  break in the skin can provide a vessel for the bacteria to enter the bloodstream. Every case is different,  so it is best that you speak with the infectious diseases team at the hospital where your child is being  treated. They will be heavily involved in the care of your child and will be able to support your under standing of the infection. However, it is important to know that as frustrating as it may be, the doctors  may not be able to establish where the source of the infection began.  

Can Necrotising Fasciitis be cured? 

NF can be treated with antibiotics and surgery. Early diagnosis is crucial to the outcome and time is vital  to the extent of surgical intervention needed. Antibiotics are utilised to kill the bacteria and control the  spread of the infection and surgery may be needed to remove any infected tissue. Once the infection is  controlled it may be that the surgeons need to perform skin graft surgery, which involves the transplantation of healthy tissue from one part of the body to another. This is to close any wounds created by the  infection and surgery. 

Life after Necrotising Fasciitis. 

Necrotising Fasciitis can be a life changing infection. As their family, you know your child best and you will  adapt unknowingly with the support of the medical staff. Children are very resilient and play therapy is  vital to help rehabilitate your child. Also books are powerful tools that can be used to distract your  child from pain or during dressing changes. There will be a play therapist and a physiotherapist who  will be able to help support your child. In addition to this there will be a ward psychologist who you  can speak to away from your child. This will help you understand your thoughts and feelings. The Lee  Spark NF Foundation are a charity that provides information and support to families of children who  have suffered from Necrotising Fasciitis. They have a website and also a Facebook group where you  can speak to survivors and also parents and families of children who have suffered NF. Below, there is an introduction from a parent and trustee of the charity with contact details should you want to get in touch. 

From one parent to another

Lucy shares her story below – if you’re a family or caring for a child with NF it helps to know others’ experience.

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Support for parents and carers of children with NF

Frankie in 2013 when he first left intensive care and was moved to a ward.

A message from Lucy

Hello! My name is Lucy Dove and in 2013 my 16 month old son, Frankie developed NF.

Frankie had NF in 75% of his back, left side and left thigh. Every case is different, but I know as a parent how scary this diagnosis is and how frightening the future can feel.

As a parent I was not aware that such a disease existed. Nor did I know the journey that my son was on as he fought for his life in intensive care. The doctors had never seen this disease so extensive in such a young child and could not tell us what the chance of survival was for Frankie. Many of our questions could not be answered. I remember having so many questions and concerns I felt isolated and afraid because this was not a com- mon childhood illness or infection. There were no leaflets or books we could read and we were told not to search the internet.

Frankie received extensive skin grafting after his battle with NF. He has had many operations and procedures since then.

As a parent I wanted to understand how he was feeling physically and emotionally and so I started to speak to other survivors and found other parents who had children that had suffered from NF. This was made possible through the charity The Lee Spark NF Foundation. They have a website and also a Facebook group where I was able to speak to people who understood what we had experienced. I am now a trustee for this charity and as well as being a big support to those affected by NF, they are heavily involved in research, education and raising awareness.

I hope you have found this information helpful and find some comfort in knowing that your child is not alone and you, as a parent, are not alone. As previously mentioned, the charity have a very supportive network on the PRIVATE Facebook group, full of survivors and families affected by NF. You can also contact us through the website.

Best wished from Lucy, Frankie and the Lee Sparks NF Foundation

Support for parents and carers of children with NF

Frankie today (2019)

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