Matt and Laura’s story
Matt and Laura live in Somerset with their one-year-old, Sam. We spoke with Matt and Laura about their experience after Sam was born.
After discovering that Kit had died from neonatal herpes (the cold sore virus), I set out to learn as much as I could about this devastating disease. I was astonished by the lack of awareness amongst the general public and, most disturbingly, by the huge gaps in knowledge of symptoms and best practice in the UK medical profession. It became clear that Kit’s death had been preventable and that the lack of knowledge about transmission, recognition and treatment was to blame.
When no existing charities could take on research into neonatal herpes, we founded the Kit Tarka Foundation (KTF) to prevent newborn baby deaths through research and education. With the incredible support of James, our trustees and community, we raised enough to co-fund a major study with the British Paediatric Surveillance Unit. This revealed rising cases of neonatal HSV and showed that babies often lacked the ‘classic’ symptoms of infection.
The research led to greater awareness among doctors in the UK and beyond, with more considering HSV for a diagnosis no matter whether the ‘classic’ symptoms exist when it may have never crossed their minds before. As a result, more babies were being given preventative antivirals.
We also created resources for parents and professionals including the THANKS (Think Hands and No KisseS) campaign to highlight the importance of good hygiene around young babies. I regularly worked with health professionals and the media to raise awareness of neonatal herpes, and the dangers of the cold sore virus by sharing Kit’s story. We also successfully pushed for HSV awareness to be included in the NICE (National Institute of Clinical Excellence) Antenatal Care guidelines.
Although I was incredibly proud of the work we had done and warmed by stories of babies whose lives we saved thanks to our work, it came at a personal cost. It was also becoming particularly challenging against a backdrop of economic uncertainty; feeling like we had to fight for every penny. We always relied on friends and family to support our work which was never our intention and sat particularly uncomfortably in the current climate.
This added stress combined with being immersed in the baby loss world and regularly recounting the trauma of my son’s death led me to the conclusion that it would be best for me and my family to step away and attempt to find a calmer way of living.
I started to look around and see if any other charities would be able to take on the awareness work and was delighted that The Lullaby Trust, who coincidentally were looking at expanding their work beyond safer sleep, offered to continue the work and Bliss offered to publish a neonatal herpes info page on their site. Confident that these charities would do a fantastic job, we decided to wind down the charity, knowing that babies would continue to be saved and Kit’s legacy would remain strong.
We have been delighted to see how The Lullaby Trust have continued the work we started, expanding and developing and reaching many more families and health professionals but always done in a sensitive manner and keeping Kit in their hearts.
Our infection prevention work
The Lullaby Trust is dedicated to continuing the work that the Kit Tarka Foundation started, in Kit's honour. We won't stop until no baby dies suddenly and unexpectedly.
More stories:
Gemma’s story
Gemma lives in South Yorkshire with her husband Thomas, and their two children, three-year-old Olive and one-year-old Jack. She shares Olive’s battle with an infection, and developing sepsis.
Lan’s story
Lan lives in Crystal Palace with her husband John, and her four-month-old son, Minh. Lan spoke to us about her experience of setting boundaries with her family to prevent infection for her baby.