Christopher's Story

At this early point in my life, I was far too ill to remember anything that happened, so I have asked my Dad to tell you the following story

Christopher
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This is the story of Christopher Edward Diamond, a remarkable little man with a zest for life and more courage than an army of men. Christopher was born in April 2004 and for the first few months of his life, was just like any other baby, then as the months progressed and the constant sickness and vomiting got worse, we began to realise that all was not as it seemed. Christopher was suffering from chest infections on a regular basis spending one week on antibiotics, one week off, one week on, one week off, and so on, and the vomiting seemed far more than normal, but the GP's assured us that he was just a ‘sicky’ baby, catching infections from his siblings. So on we plodded with him, week after week, back and forth to the GP’s, sometimes as often as everyday, only to be sent away with more antibiotics and inhalers. Until, when Christopher was 10 months old we saw a different GP who had the foresight to send us to the paediatricians at the hospital to ‘check him out’. Within days we were in Newcastle Paediatric Immunology & Infectious Diseases Unit and Northern Supra Regional Bone Marrow Transplant Unit For SCID and Related Disorders! The very name alone, realising our darkest nightmares.... Christopher was seriously ill.

We were sent there for tests, which were meant to take a day or two, but each test lead to more tests, and more Doctors coming to assess him with regard to their own specialist field, including Immunology, Gastroenterology, Pulmonology and Cardiothoracic, followed by an array of medical personnel including Registrars, SHO’s, Physios, Radiographers, and more nurses than one could wish for, but one thing that failed to follow them all, was answers.....

Within days, Christopher had deteriorated badly and went down from 18lb 6oz on arrival, to 16lb 2oz on day three. Pneumonia had now set into Christopher’s lungs and as his mum and I stood by helplessly, our little boy slipped further away from us by the minute.

  
CHRISTOPHER ON DAY 2 IN THE 'BUBBLE ENVIRONMENT' ON WARD 23 NGH.

Christopher was now on intravenous antibiotics and due to dehydration was also on replacement fluids by IV drip. Christopher lay there for two days, getting thinner and thinner, waking only to cry then crying back to sleep. After a couple of days, Christopher started to wake for an hour or so each day, and when he was awake he was very unhappy, not the usual laughing Christopher that we all knew so well. Not wanting to play or eat, Christopher had little else to do except return to sleeping which he did well, and in great amounts. Slowly, over the next day or two, he started to wake more regularly and for longer each time. All the while we were still waiting for some explanation as to his illness, but still nothing. Christopher slowly started picking up and eating more and more each day until his appetite was normal again, but his digestion certainly wasn’t!! Something was causing him to have constant diarrhea. In a search for answers, Christopher was taken into theatre for a full exploratory work-up, to include a bronchoscopy, endoscopy and colonoscopy and to take biopsies from his intestines.  Within a few days the results started coming in, some of them eliminations, some of them indications.

The results started revealing the extent of his illness. Christopher was found to be suffering with a rare genetic condition called Intestinal Lymphangiectasia, where by the lymph vessels in his gut were dilated and leaking lymph fluid, which contains nutrients such as immunoglobulin and albumin. This also meant that Christopher was also unable to digest conventional fats, including lard, vegetable, sunflower, and olive oils, as well as all dairy products like cheese, milk, butter, etc…  all the things we had been feeding him to help him regain weight!. Time for a total diet change…

Christopher started on a ‘MCT’ diet consisting mainly of a formula milk made from MCT oil. MCT oils are so called as they contain Medium Chain Triglycerides (or fats) as opposed to all the fats which he can’t have which are LCT’s, Long Chain Triglycerides. This was tremendous, over the next few days Christopher’s weight rocketed to over 20lb, although some of this was water he was retaining due the loss of albumin in his gut. Albumin is a chemical in the blood which facilitates the transportation of water through the blood stream, and consequently, without it, the water just stayed where it was until such a time as the levels of albumin were high enough again to drain the fluid away.


 
CHRISTOPHER ON THE DAY BEFORE COMING HOME, SWOLLEN BUT RECOVERING!

As well as, and because of,  this initial condition, Christopher was found to be losing immunoglobulin, which explained why Christopher had suffered so many infections, in particularly, chest infections; he was ‘Immuno-Deficient’. Arrangements were made for Christopher to receive Immunoglobulin replacement and several weeks after arriving in Newcastle for a two day visit, we finally returned home, with Christopher, a journey we had come to dread would never happen.

At this point , great thanks and appreciation must be given to all the staff on Ward 23 BMT unit with special thanks to Rachel, Christopher's named nurse and most of all to Dr Mario Abinun, Consultant in Paediatric Immunology. We owe you everything and will never be able to repay you.
As we were in the bone marrow transplant unit, where the vast majority of the equipment is bought with money raised by ‘The Bubble Appeal’, great thanks must also be given to the ’The Bubble Foundation’.  

CHRISTOPHER ON HIS FIRST NIGHT BACK HOME - AGE 12 months

Christopher returned to Newcastle on a 3 weekly basis for treatment and has now been transferred to more local hospitals for his long term care. He receives weekly injections at home to replace the immuno-globulins and is on long term antibiotics, plus a nebuliser to help his breathing and strengthen his lungs. He continues to go from strength to strength and apart from the odd asthma attack and a couple of bouts of ‘chicken pox’, Christopher has just turned 5 and is doing comparatively well now, apart from still suffering chest infections and occasional swellings, he is living life to the full, spending almost every waking moment laughing, joking, playing and having as much fun as he can. He has also regained his tremendous appetite and loves to eat anything he can have, which considering he is on a fat free diet, is quite restrictive, but as his favourite foods are jam, crackers, and a pot o’ tea (with skimmed milk), he has great fun. This will be a life long illness for Christopher, but to see him coping so well with it when he is so young has given us strength and faith. Throughout his illness Christopher has taught us one thing more than anything else…
  

KEEP SMILING...