In Support of Cord Blood Research

Successful Cord Blood recipient, James English, is 16 years old. In this heartening story, his father, Darren English, has told of James' difficult start in life, his illnesses and, finally, how he was diagnosed with Aplastic Anaemia:

"Thanks for the warm introduction. Any discussion regarding James and everything he went through in his first five years needs to acknowledge the rough start to life that he had. You wouldn't know it to look at him now, but James was born three months premature on the 24 January 1990. My wife, Isla, suffered a severe case of Pre-eclampsia. As her blood pressure skyrocketed, and the toxins within her blood built up, it became necessary to have James delivered by caesarean section three months before his due date.

"Because he was born premature, James was required to stay in hospital for three months past his birth, residing in both the Royal Women's Hospital and Monash Medical Centre at Moorabbin. During those three months he took us on an emotional roller-coaster as he suffered a variety of complications related to his early birth. James finally came home with us on 13 April 1990.

"From around the age of 12 months James battled a number of relatively standard childhood diseases such as asthma, bronchitis, and pneumonia. All of these were attributable, to a degree, to his premature birth. He also achieved his childhood milestones, such as beginning to crawl and walk, three to four months behind schedule.

"What has always been present in James, however, is a steely resolve and determination that sees him through. By the time he was four his general health had improved. He was at kindergarten. He was extremely energetic, intelligent and stubborn.

"By early 1994, it seemed to my wife and I that we were in a position to finally put the worst behind us.

"June 1994, however, provided us with a rude awakening. James started having blood noses that would occur any time of the day. They would take ages to stop, and would commence again for no apparent reason. We took James to the doctor who, at the time, attributed this to James 'picking his nose too much'. We were told not to worry and that they would eventually clear up. They didn't.

"What became apparent next was the bruising. No parent wants to see bruises on their kids. Other adults look askance at parents, quite rightly, when a child is seen with excessive bruising. It was at this stage that blood tests were done. What we found was that James' platelets were well below normal levels, and his red and white cell count was not all that flash either.

"Over the next month a series of tests were undertaken upon James to try and determine what was wrong. At this point in time James started having his first blood and platelet transfusions, which would get him through a 7 to 10 day period until another transfusion would be needed. At this stage we were told it was likely to be a virus and that it would pass. Finally though, we got the diagnosis of Aplastic Anaemia.

"There is one part of the story that up until now I have not mentioned. My wife Isla was pregnant again, expecting our second son, Jason, who was due in September 1994. It was recommended to us that we take the umbilical cord blood during Jason’s delivery just in case it was needed to undertake an urgent bone marrow transplant. This would be possible so long as Jason and James were a suitable match. With only a 25% chance of this occurring it seemed like a long-shot to us.

"It is at this point I would like to introduce James. This is the first time that he has spoken at a public forum such as this regarding his illness. In his words he will explain what his disease was, describe the implications of his condition, describe his treatment, and his recollections from this time. After James has spoken I will return to explain what has occurred since James' transplant."

"Hello, my name is James and I am 16 years old.

"Twelve years ago, I was diagnosed with the disease Aplastic Anaemia. Aplastic Anaemia is a condition where the bone marrow does not produce enough, or any new blood cells. Anaemia refers to having a low red blood cell count, but aplastic anaemia patients have low cell counts on all three cell types. One of the known causes of this is when the white blood cells attack the bone marrow, but the cause of mine was unknown. The diagnosis for this could not be made until a bone-marrow biopsy was performed. After that the treatment is suppression of the immune system which involves a daily intake of medicine and in severe cases, a bone-marrow transplant, which is what I had.

"After the transplant, regular blood tests are required to make sure that the patient is still in a state of remission. At early stages of the illness, I was having nosebleeds and severe bruising, but my condition gradually got worse and occasionally I was bleeding from the mouth. I was later taken to the Royal Children’s Hospital in Melbourne where I was treated for my illness. At the time treatment of the disease was limited, and the treatment that I was receiving was simply not working. Towards the end I was put into a quarantined area in hope that my condition would not get worse.

"The last resort was a bone-marrow transplant, but neither of my parents was a match. Then my younger brother, Jason, turned out to be a match and the successful transplant was given to me when I was said to have only three weeks left. The transplant was provided to me after I underwent chemotherapy to kill off my existing bone marrow. This occurred in November 1994. Three days later 45ml of umbilical cord blood was injected into me via a syringe. From there it was twenty days until first my platelets and red and white blood cells started returning, restoring up to relatively safe levels after another two or three weeks.

"I cannot remember much of my time spent at the hospital, but I do remember when I had to have a needle inserted into my back for the bone-marrow biopsy.

"It's 12 years later and I am very grateful for the support of my doctors, my family and the ongoing research into cord blood so that we can treat diseases like the one that I had."

James' father continues the story:

"James left the isolation ward in December 1994 with the cheeky words "I am never coming back here again". His body had been through a lot, but his spirit was strong. As James’ immunity was rebuilding from nothing after the transplant, we needed to guard against infection. As such, James essentially spent the next year in isolation at home. Initially he was visiting the Royal Children's Hospital up to three times a week. As his platelet, red and white cell counts improved we were able to wean him off these visits. Professor Peter Downey at the Monash Medical Centre was able to state in1995 that James was essentially cured. But as parents, doubts naturally remain as to 'what could happen next'. Today James visits Professor Downey every two years to check on James’ development through his teenage years.

"Fortunately James' bouts of illness since the transplant have been standard children's fare since 1995. We have had to be careful, but James is now considered a normal teenager. So normal, in fact, that he recently returned from a two week Outward Bound trek in the East Gippsland wilderness as a part of his school's curriculum. James, as you are now aware, is extremely lucky to be here. In fact we are all lucky to have James here. My wife Isla and I were lucky to be pregnant at the time when James got ill. We were lucky that Jason was born at the exact moment when the cord blood was needed. With only a 25% chance of Jason and James being a suitable match we were extremely lucky that Jason and James were an exact match. Finally we were lucky in that 45 milllilitres of cord blood was enough to save James' life.

"If there is one thing to be remembered from our speeches today it is this. Cord Blood Can Save Lives. In those cases where no other avenues of treatment are possible, the use of cord blood for bone marrow transplants can assist children combat diseases such as Aplastic Anaemia and Leukaemia. The reality is however that implementing an all encompassing national and international register can only be achieved by the work of volunteers, and the assistance of corporations, media, and State and Federal levels of government all providing support for research and necessary infrastructure.

"Cord Blood Can Save Lives, but it will take all of us pulling together and all the resources at our disposal to make more stories such as James become a reality."

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