Medical Experts And Medical Negligence Lawyers Supporting Family Of Boy Who Developed Condition Linked To Cerebral Palsy

A mum is campaigning to raise awareness of a rare life-threatening neurological condition following her son’s death. 

Isaac Redgrave was left severely disabled and developed cerebral palsy after he was starved of oxygen following maternity care failings during his birth. 

After suffering involuntary muscle spasms and seizures, Isaac, was not diagnosed with status dystonicus until September 2019 when aged 10. Children with cerebral palsy are most likely to develop the condition which involves sustained muscle spasms leading to abnormal posture and movements. 

Isaac sadly died aged 11 as a consequence of his conditions. 

Lawyers and medical experts support Isaac's family in raising awareness of status dystonicus

Mum, Lizzie Redgrave, from Clayton, Bradford, has now joined with her legal team at Irwin Mitchell - which secured the family a settlement in connection with her and Isaac’s maternity care - and medical experts to raise awareness of the signs of the condition. 

Lizzie, aged 42, is using World Cerebral Palsy Day to speak for the first time about her family’s loss and of the need for greater understanding of status dystonicus.

Samuel Hill is the specialist medical negligence lawyer at Irwin Mitchell, supporting Lizzie.

Expert Opinion

“Isaac’s story is another reminder of the devastating circumstances families can be left to face because of maternity failings.

“While his family did everything they could to provide him with the best life possible, Isaac faced many challenges because of his condition.

“It’s only now that Lizzie feels able to speak out and try and turn her tragedy into positivity.

“We join her in raising awareness of status dystonicus, not only so other families are aware of the symptoms but so they can also access the specialist care they may need to support their loved ones.” Samuel Hill

Medical negligence: Isaac Redgrave's story

Isaac was born in a poor condition in July 2009. He was deep purple and had to be resuscitated. It was around 10 minutes before he breathed on his own and he subsequently suffered from seizures.

As a result of his brain injury which was caused by a lack of oxygen during his birth, Isaac was diagnosed with dyskinetic cerebral palsy, affecting all his limbs, aged about five months.

Isaac had significant feeding difficulties and had to fed via tube. He was unable to sit, stand or walk unaided, required round-the clock-care and was fully dependant on others. 
 
Lizzie, who was forced to give up work as an administrator and husband Phil, instructed expert medical negligence lawyers at Irwin Mitchell to help them access the specialist support, therapies and rehabilitation Isaac required. 

Specialists at Leeds Teaching Hospitals NHS Trust diagnose Isaac with status dystonicus

Isaac would often be taken to hospital after suffering seizure-type symptoms. However, on many occasions, his symptoms were not acted upon and Lizzie’s concerns were dismissed because of the lack of understanding of status dystonicus. It was only after he was referred to specialists at Leeds Teaching Hospitals NHS Trust that he was diagnosed with status dystonicus in September 2019. 

Whilst Lizzie was informed that the condition was a life-threatening 999 emergency, she felt relieved to finally have a diagnosis. Isaac had an emergency operation in October 2019 to fit a specialist pump to deliver a muscle relaxant called Baclofen directly into his spinal canal. Unfortunately, by the time of Isaac’s diagnosis his stomach was unable to absorb sufficient medication to help manage the condition. Isaac had a torrid recovery following the emergency surgery but then showed signs of improvement. Unfortunately, Isaac later developed sepsis. 

Sadly, Isaac died in March 2021. Whilst Lizzie has said she is not angry that Isaac’s condition had gone undiagnosed for so long, in hindsight, she feels that Isaac would have had a much better chance in life had he been diagnosed and treated appropriately earlier.

Lizzie reveals impact rare condition had on Isaac 

Lizzie who together with Phil, have another two children, Toby, aged 11, and Luca, aged three, said: “I kept raising concerns for years. Isaac would become hot, sweaty, thrash around and scream out loud. Because he didn’t suffer from classic seizure-type symptoms, my concerns were often brushed away and it felt that nobody could really get to the bottom of what was happening to him. 

“He would go into dystonia and would be like that for hours until he finally went to sleep. Once he fell asleep, he wouldn’t wake for hours. There was no rhyme or reason to his seizures or when and where they would happen. It was so harrowing. He would go grey; you would see the terror in his eyes and him pleading ‘help me mummy’. 

“He would retch and vomit until blood came out of his mouth. He wouldn’t stop and it was like he was running a marathon with someone with a gun behind, chasing him.

“He did this throughout his life and it became worse around the time of puberty when the episodes lasted much longer. It was only when I saw the specialist that things started to become clearer. They were surprised that Isaac had even got beyond the age of 10.” 

Family raise awareness of status dystonicus as Isaac's legacy

Lizzie added: “Isaac means the world to us. We are so proud he was our son and it breaks our hearts that he’s no longer part of our family. 

“All we wanted was to help him and sometimes it felt we were powerless to do so because of his condition.  

“I can’t thank all the specialists who diagnosed Isaac’s status dystonicus for everything they did for him and our family. 

“Whilst it appears that there is a slowly growing understanding of status dystonicus in the medical profession, it very much remains something that isn’t well recognised.  

“I don’t blame the medical professionals for not diagnosing Isaac earlier, I just don’t think that they were aware of status dystonicus. I just hope that by sharing our story we can help other families. This has got to be Isaac’s legacy.”

Isaac's story used to help train junior doctors

Dr Mike Taylor, a consultant paediatric neurologist at Leeds Children’s Hospital, uses Isaac’s story during regular training sessions for junior doctors, covering status dystonicus. 

He said: “Dystonia is a movement problem where the muscles contract and twist repetitively with a range of causes from brain injuries to genetic disorders. 

“Status dystonicus is a severe exacerbation and is a life-threatening movement disorder emergency with a 10% risk of death in each episode. It is often under recognised and under reported due to its relative rarity. 

“It is important that any child who has dystonia is assessed and treated, and parents and clinicians are aware of this complication. Isaac inspired me to teach this to my resident doctor colleagues ensuring his legacy persists.”

Find out more about Irwin Mitchell's expertise in supporting families affected by cerebral palsy access specialist support at our dedicated cerebral palsy section.