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Marking Spina Bifida Awareness Week
The mother of a Staffordshire eight-year-old boy living with spina bifida has revealed his biggest challenge was “accepting he was different” as they mark a nationwide campaign.
Leo Keates, from Uttoxeter, was born at Burton Hospital in 2012. Prior to his birth, his mother Faye Leason had attended all her routine scan appointments and was told everything was “fine.”
However, shortly after birth, Leo was diagnosed with lipomyelomeningocele, a form of spina bifida.
Following her son’s diagnosis, Faye instructed medical negligence experts at Irwin Mitchell to investigate the care they received under the Burton Hospitals NHS Foundation Trust and whether the condition should have been picked up during pregnancy.
The legal team successfully secured a settlement for Faye in 2017, which will help Leo access the specialist therapies and support he requires.
Faye and Leo are now joining with their lawyers to mark Spina Bifida Awareness Week by raising awareness of the condition and the support available to people affected, in particular through the charity Shine, which provides specialist support from before birth and throughout the life of anyone living with spina bifida.
“Leo has not had the easiest of starts to life, and he has had to come to terms with what his spina bifida means for his future.
Through our work, we sadly see many families who face uncertain times due to illnesses and health conditions; we hope that this settlement will make life a little easier for Leo and his family by helping to fund his care, therapy and equipment needs.
Spina Bifida Awareness Week is the perfect opportunity to share their story and make other aware of the support available through the work of the national charity, Shine.”
Guy Forster – Partner
Faye was 20 when she fell pregnant with Leo. She was referred to Burton Hospital for her maternity care and, at her 12-week scan on 26 October 2011, she was given a due date of 12 May 2012.
She underwent routine screening tests, involving a blood test to assess her risk of a Down’s syndrome baby and a detailed anomaly scan at 20 weeks gestation to check the health of her baby. She said she was told everything was “fine.”
Four days after her due date, Faye began leaking fluid and was taken to Burton Hospital and put on a heart rate monitor. A midwife said her heart rate was dropping, so she was taken to theatre and given a spinal block. Leo was delivered by caesarean section shortly after.
A lump was found on Leo’s spine and he was examined by a paediatrician. Faye and her partner, Marc Keates, were advised that their son may have spina bifida, which is described as an anomaly in the development of the spinal cord and surrounding bones leaving a gap in the spine. The couple were told that Leo needed an MRI scan but that it wouldn’t be carried out until June.
Faye, 29, said: “When we took Leo home, Marc and I did not know what to think. It was supposed to be a happy time, but we were so worried about Leo. The wait to see how Leo would develop was unbearable.”
Leo was given an MRI scan on 1 June, and was diagnosed with lipomyelomeningocele, a type of spina bifida. He underwent untethering surgery and Faye was told the spina bifida may affect his development and walking, and also cause issues with his bowel and bladder functions.
Faye and Marc received vital support and information from spina bifida charity Shine, and began attending meetings with other families affected by the condition.
Faye added: “At the time of Leo’s diagnosis, we found everything a real struggle. We just kept thinking why us?
“Shine really helped and we will always be grateful for the support they gave us.
“As he got older, Leo’s biggest challenge was accepting he was different, as he enjoys playing on his Playstation like any other boy his age. He also plays on an electronic dirtbike in the field behind our house, but it can be difficult for him to keep up with the other children and he will always need that extra support.
“We have shown him videos of Paralympians to prove that there are so many different people in the world with many different disabilities, and the main thing in life is not to let it hold you back from your dreams and what you want to achieve.
“We are devoted to him and are determined to make sure he has the best life possible.”
Spina Bifida Awareness Week runs from 23 to 29 October and is held to raise awareness of the condition and bring the ‘Back to the Front’ of people’s minds.