Barbara - 8 year old double amputee from Drogheda

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Hi. My name is Agnes. I am Barbara's mum.

I think many of you knows Barbara, an eight year old school girl from Drogheda, who had a Strep A septic shock in May 2023. It led to multiple organ failure and cardiac arrest but thankfully she was brought back to life and thanks to ECMO treatment in Karolinska University Hospital in Stockholm, she survived and has been bravely facing her new challenges ever since.

As a result of the septic shock, she had a double below knee amputation in July 2023, and also lost some of her digits in both hands.

You can read more about Barbara's illness here :

https://www.independent.ie/regionals/louth/news/louth-schoolgirl-8-was-minutes-from-death-after-strep-a-infection-caused-septic-shock/a1500074869.html

For the last 12 weeks she has been doing her intense rehabilitation programme in National Rehabilitation Hospital in Dun Laoghaire and this programme is coming to end just before Christmas. She learnt how to walk on her prosthesis, she got her muscles stronger after intense physiotherapy sessions and learnt how to use assisted technology at school.

At the of December she is coming back home and will be ready for her school after Xmas break.

Barbara’s hands and fingers are still not fully functioning and she lost the ability to draw, write and use her fingers the way she was using them before. She requires help with dressing, washing, she is not able to push herself on a wheelchair - prosthesis user still needs to rely on wheelchair and mobility aids, as prosthesis are quite heavy, also they have silicone liners, which with prolonged contact with skin, especially during summer months, make lots of problems and simply are just awkward, hence the need to use wheelchair in between. Brilliant occupational therapists team in Dun Laoghaire was working very hard with her to make the most of her fingers, and practised with her how to use cutlery, how to make a sandwich, how to peel vegetables, however she will require extensive physiotherapy after her discharge for most of her life to relieve stiffness in her residual fingers, thumb and wrists. Her index fingers in both hands will require more operations to straighten them up as at the moment they are totally stiff and she is unable to use them. With good physio she will be able to write and draw again. She will also require physiotherapy sessions during her lifetime to strengthen her muscles for using prosthesis as she grows. At the moment we are concentrating on making her hand stronger to be able to push the wheelchair herself at school.

Public waiting lists are so long and going private is very expensive. Us parents help Barbara with exercising her fingers, doing hand therapy at home few times a day and the results are great, but it will need to be continued all the time during her life and needs to be evaluated by professional occupational therapists from time to time.

In future Barbara will be independent to some point, as with prosthesis she will be able to walk, drive and lead normal life as a teenager and an adult but she will never fully recover from her disability and will be permanently relying on artificial legs, mobility aids and technology to make the most of the use of her hands. She will be requiring new sets of legs as she grows, basic walking prosthesis will not let her to run, jump and do sports - she will need a specialised set of legs for that which are not funded by HSE. She is only 8 and before her illness she was cycling, running, swimming, jumping and was about to start dancing lessons. We know she will be able to do all these things again, but it will require lots of resources, dedication, time and patience.

The same as all the parents of a child with disabilities, we are thinking about the time when we are no longer with her, and we want to make her life as easy as possible when she grows up, not let her worry about meeting the ends and choosing physiotherapy over food.

She had such a difficult half of a year but she recovered so quickly with such a great attitude. She is always smiling, never looking back. She is so resilient and a happy child, looking forward to her new normal life. She is very good at sports and is supported by a brilliant sports facilitator from the Irish Wheelchair Association. Now we know there is a life for Barbara without her legs but it will require patience, hard work for all of us and financial resources.

We are so happy to have her back and we are looking forward to her enjoy her life again. Barbara is the bravest girls we have ever seen. We want to make her life as easy as possible and take the worries she may face in future off her. She really deserves it.

Barbara's progress can be followed on her Instagram account : https://www.instagram.com/barbara_the_bravest