Alice Sloman, age 14, died following anaesthetic for an MRI scan. Alice was diagnosed with autism, hyper-mobility, visual impairment, learning difficulties and growth hormone deficiency, poor exercise tolerance, tired easy and used a wheelchair for long distances. She had been getting headaches which were presumed to be occurring due to a side effect of her Growth Hormone Replacement therapy. She suffered heart failure during the MRI , starving her of oxygen and causing multiple organ failure. She survived for 3 days on life support until it was removed.  

Alice was under paediatric care for almost 10 years of her life. She also had her own endocrine specialist.  As parents we just wanted to know our daughters condition better so we knew how to parent as best we could. Our concerns were never listened to or investigated. We want to find out how this happened at the inquest in December.

WE WANT ANSWERS!

Not only will this inquest give us the answers we desperately need it will also create recommendations that can be implemented throughout the NHS nationwide, which can help children with special needs, their families and carers to access intelligent healthcare that will understand the child before they arrive for a procedure.

Alice had autism and she tired easily. She had a growth defect yet she was never investigated thoroughly.

Alice did not have a heart check before anaesthesia. We believe that all children should have their heart checked before anaesthesia in order to save lives. An ECG takes just a few minutes and can be done in pre-op assessments or at the patient's bedside,  and most nurses are trained to perform this. We have been to parliament to meet Stephen Hammond MP to campaign to implement this.

We are also campaigning for children with special needs to have a flagging system on their medical notes which clearly states all medical diagnosis for each individual child, so that medical staff can care for individuals based on their individual needs. 

We are also hoping to change waiting times for special needs children who are attending an appointment, so as not to cause unnecessary distress, which can adversely affect blood pressure, heart rate and mental state. This will also include a strategy for pre-surgery arrival times. Most patients having procedures have to arrive at the hospital in the early morning and may not have the procedure until lunch time. In Alice's case, she arrived at 7:30am and had her procedure at 11:30am.  This caused unnecessary stress and hypertension putting a strain on her heart. 

Parents of special needs children have the understanding and capacity to manage their child before procedure effectively and believe waiting in an unfamiliar place, especially hospital, can cause a child to become stressed especially those with autism.

Alice's post mortem has revealed a catalogue of undiagnosed conditions which caused her life limiting problems: 

Alice's Heart

Firstly, when critical a quick scan discovered Alice had undiagnosed hypertrophic cardiomyopathy - a condition which could have been found had she had an echocardiogram or echo cardiograph. Neither were ever performed on her even though we raised our concerns of growth hormone therapy.

GH stimulates growth. Alice was only regularly monitored for her weight and height, even though we continued to ask for over seven years if it would grow any other part of her body. We were always told 'no' and tests were never carried out.

Alice's post mortem reveals that Alice's heart weighed more than twice the weight for a child of her weight. An average 40 kg child's heart should weigh 221g, Alice's was 756 kg.

We believe that all children should receive heart checks before anaesthesia to prevent unnecessary death. 

We also believe that children on GH should have a cardiologist so that their hearts can be monitored when on the treatment and that regular x rays of their internal organs should be performed to monitor internal growth.

Alice lungs were also over twice the average weight for a child who weighs 40 kg.

Mitochondrial disease

Alice's post mortem also shows she had undiagnosed Mitochondrial Disease.

Out of 13 symptoms on a mito website ALICE HAD 10, and they never put all her traits together.

Why are we raising funds?

It is important for us to access expert representation that will allow us to have a fair fight in court. Doctors have lawyers on stand by for when things go wrong, whereas we are not in a financial position to be so lucky.

Experts will also enable us to try and change basic patient safety aspects of the NHS to enable special needs children to have access to better overall individual care when in hospital.

Please help us by donating what you can and sharing the page on social media and via email with family, friends and colleagues!  We can't do this without you!

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