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Being a "Blue Baby"

By Edward Mansell

HELLO - my name is Edward, I was born in London in October 1933. Cyanosis [blueness] was noticed from the age of two weeks and this was diagnosed as a condition called Fallot's Tetralogy - we were called 'blue babies'.

Dr. Fallot [in Marseilles], who published a paper in 1888 setting out the four faults involved, first defined this illness. One fault is the narrowing of the opening into the pulmonary artery another is a ventricular septal defect [hole in the heart]. This causes the heart to pump a mixture of venous blood into the circulation.

As a result of these faults we became out of breath on exertion, the fingers and toes were clubbed and growth was retarded. I walked and talked at a normal age but was rarely able to walk more than 25-50 yards before becoming breathless when I, like most blue babies, squatted.

From the age of 5-10, I had severe attacks of unconsciousness if I cried or over exerted myself in any way. The winter made things worse and I went even more blue than usual so I was even allowed to wear long trousers to help my poor circulation.

Thus my early life was that of a handicapped child. There was no treatment available and life expectancy was very poor. Dr. Campbell at Guy's Hospital gave the following statistics - 50% reached the age of 7, 20% reached the age of 14 and not more than 10% survived to 21. I went to school but had to be carried from classroom to classroom by my fellow pupils.

In the words of Nadas & Bing we were "miserable, blue, squatting little children unable to run or play". In 1947 an American surgeon named Alfred Blalock, from the John Hopkins Hospital in Baltimore, came to Guy's Hospital. Dr. Blalock, together with a Dr. Taussig, had devised an operation which they first carried out in November 1944. This operation used one of the body's own arteries to create a shunt thus bypassing the obstruction to the pulmonary artery. The artery used was the right subclavian [which supplied the right arm] and for several years after the operation I had no pulse or blood pressure in that arm.

I was 13 years old when Guy's Hospital chose me to be one of the children operated on by Dr. Blalock himself. I was only the second child in this country to be operated on by him! The operation was carried out under conditions that were very different to today. No heart and lung machines, no intensive care units and none of the sophisticated equipment found in modern operating theatres. However, the operation was very successful and restored children like me to full health. I was able to live a normal life and play games although I was very under-developed for my age. Though the operation was not a cure [as the national papers suggested], it was a highly successful palliative operation. As surgery advanced it became possible to operate inside the heart itself. As a result my life was totally transformed. I was suddenly able to do all the things that had until now been impossible.

Eventually I was able to marry, have children and work normally. In 1972 my heart began objecting to the load that had been imposed on it. So in 1973, After further tests, I was again admitted to Guy's Hospital, this time for open-heart surgery. The surgeon, Mr Alan Yates, was able to seal the hole in my heart with a Dacron patch and also unravel many of the original faults. Once again I was restored to full health and went on working full time until last year when I retired. I now have the opportunity of enjoying all the things, which once would never have been possible, including the pleasure of seeing my baby grand-daughter growing up. I was indeed most fortunate to live at a time when treatment became available. I have since made myself available to hospitals to be used for demonstration, education or examination purposes - not always to the liking of the students examining me. I am now a member of GUCH PA (the former name of The Somerville Foundation) and am very happy to help promote their aims and objectives.

Printed in GUCH News - Issue 23, December 1999

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