Having just returned from a week in Chicago, which was spent with a number of families from Northern Ireland who live in exile there with their sick children I posed myself a more fundamental question. That is in relation to the standard and levels of care provided by health service. I approached the trip with a measure of scepticism, believing that few fall through the cracks. Having been approached in the Autumn to provide professional services to the Billy Caldwell Foundation (www.billycaldwellfoundation.com) – a charity helping children with severe, intractable epilepsy – there was a healthy doubt in my mind that Billys story was an isolated case. Now, I am not so sure and I am left wondering how many more cases exist out there of children who were given no hope and who were sent home to die? Taking it a step further, I now wonder how many have died or are dying supposedly under the watchful eye of the National Health Service?
The Billy Caldwell Foundation was established in October this year by Billy’s mum Charlotte and launched at Parliament Buildings by the First and Deputy First Ministers. Billy is a three year old boy from Omagh who has severe, intractable epilepsy and Angelman’s Syndrome. This is Billy’s Story (more below).
Watch this camera phone clip of Charlotte and Billy recorded last week in Chicago. Apologies, but it is not the best quality. http://uk.youtube.com/watch?v=1ymlHR3iFjU
When Billy was 4 months old he awoke from his sleep stared wide-eyed for thirty second and then seemed to doze off. He repeated this two more times that night at thirty minute intervals. Charlotte rang the out-of-hours doctor who directed her to her local general hospital to get his stats checked out. The receiving medical staff there detained him overnight and transferred him by ambulance the next day to the Pediatric ward in the Erne Hospital, Enniskillen. On his way there, Billy had his first major convulsion which continued for six hours. Charlotte prepared herself that Billy was going to die.
Between seizures, Billy was transferred to a Belfast hospital for further care under a specialist Neurological Paediatrician. Billy remained there for the next fourteen weeks where he experienced the full range of seizures; petit-mal; grand-mal; tonic-clonic; absence attacks and status seizures. Drug after drug was administered without success. These included Topramax, Phenobarbitone, Sabril, Medazalim, Chloral Hydrate, and many more. On one occasion, the specialists put Billy into a deep anaesthetic sleep in the Paediatric Intensive Care Unit, in an effort to end the seizures. This was to no avail.
Billy was reduced to a lifeless doll with no smiles and no head control, just his large blue eyes staring back out. Eventually the consultant told Charlotte that he could do no more for Billy. Charlotte was told by the specialist that the most she could do was to take Billy home and make him comfortable. She was told that he would never talk, walk or even sit up. In fact, their prognosis was that his death was inevitable and likely within six months. When the doctor prescribed Morphine for Billy, Charlotte believed this could only shorten his life so she refused it.
Charlotte, believing there was hope out there, pleaded with the consultant to refer Billy to Dr. Helen Cross in Great Ormond Street Hospital, who she knew from research on the internet, was the leading specialist in the UK on the subject of children with seizures that were difficult to control. He agreed to do so but in an Insight programme broadcast late last year, Dr. Cross stated Billy had not been referred to her until eighteen months after discharge and only then after intervention from the Health Minister. The delay, one must bear in mind, in terms of seizures may have led to further neurological damage and developmental delay.
Charlotte then took things into her own hands and started to do research on the internet where she found Childrens Memorial Hospital in Chicago and Dr. Nordli. In the US, a doctor who specialises in the care of children with seizures is termed an eptologist. There is no such specialist in the UK. Charlotte started to fund-raise soon after her initial contact with Dr. Nordlis department. She raised £200,000 http://www.billycaldwellfoundation.com/fundraising_1.php to take Billy to the US and meanwhile Billy was continuing to have multiple seizures and with increasing frequency. He was beginning to go blue during his seizures, indicating that his oxygen levels were dropping to a dangerously low level during the attacks. So much so, that the paramedics in the ambulance were having to bag him.
Back in Belfast the consultants response to Billys deterioration was to add further medication with the inevitable side effect of making Billy more and more drowsy. He was already on a cocktail of drugs and it was only when Charlotte had booked flights to the US and arranged initial assessment that Billy was referred to Great Ormond Street.
On 11th September 2007, Charlotte sat in Dr. Nordlis office in Childrens Memorial Hospital, Chicago and asked him the question that was most important to her and to Billy.
Is there hope for Billy?
ABSOLUTELY ! was Dr. Nordli clear answer, without any hesitation.
Dr. Nordli started Billy on the Ketogenic diet and weaned him off the more toxic drugs. He established an exact diagnosis for Billys condition (Angelmans Syndrome) and in addition, the intensive physiotherapy, OT and speech therapy has proven to be very helpful to Billys development. Over the last 9 months his major seizures have been abolished. He only rarely has a minor one. He can now take 60 steps with minimal support. He can say Mum, which he uses to great effect when he wants fed or when he is tired. But most of all he can communicate best with his beautiful big blue eyes.
This is a story of hope but also one which poses serious questions about the NHS.