Lori Hoogewind
14st neurofibromatosis Tumour
Lori Hoogewind
Lori and Gary Hoogewind led a perfectly normal life in Michigan. They were married in 1984 and adopted a little girl 13 years later in 1997. All was well until the winter of 1998 when Lori’s life was about to be turned upside down.
When she was born her mother noticed a small lump and a fairly large birthmark on her back. Nothing much was thought of it at the time, but it was to prove very significant.
Neurofibromatosis is caused by the mutation of a single
gene which distorts the CNS (Central Nervous System) and leads to the spontaneous
development of small, usually benign, tumours all over the body. By the
time Lori was married she had undergone several operations to remove these
small tumours. At this time, doctors were afraid to operate on the
original lump on her back. In 1984 a malignant tumour was found on Lori’s
body, for which she underwent radiotherapy which stopped the cancer but
had a catastrophic side-effect.
The radiotherapy, rather than shrinking the residual tumour, caused an explosion of growth in the benign tissue. Within a matter of months, the tumour had grown to immense proportions and was consuming vast quantities of her blood supply. The tumour ballooned rapidly to 14 stone, double her original body weight, and wrapped around from her back to her stomach.
At
this point Lori and Gary Hoogewind could not find a doctor willing to
treat a tumour of this size, and the local health services began
counselling for, what they believed to be, her imminent demise. A lucky
break put them in touch with Dr. Priscilla Short who introduced them to
Dr. McKinnon.
Dr. McKay McKinnon Clinical Assistant Professor of Plastic Surgery began to assemble his team of experts, including Dr. Madelyn Kahana, Medical Director of Paediatric Intensive Care and a leading anaesthetist, and Dr. David Song, Chief Resident of Plastic Surgery who would plan the complex operation. The size of the tumour presented particular problems, not least of which was arranging some form of support to hold such a massive growth.
The removal of the biggest tumour in medical history would take many hours and would require every one of the many blood vessels contained within the tumour to be cut and sealed one at a time to prevent huge haemorrhage which would almost certainly cause Lori to bleed to death.
During the second half of the operation, major problems set in. Lori began to bleed and Dr. McKinnon had a critical decision to make. To stop the operation and Lori would die, but to continue may have the same outcome. Finally he decided to continue but cut around a particularly bloody portion of the tumour located close to the spine and leave this for later removal.
After 18 hours of surgery and 50 pints of blood the tumour was removed. This left Lori with a 40% skin loss which over the next 8 weeks would require 5 major skin grafts. Ultimately, the operation was a success and Dr. McKinnon and his team made medical history. Lori Hoogewind recovered fully and has returned home to her husband and daughter.
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