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Lewis Prior was born with complex heart problems and required medical intervention from day one. His mum, Karen, tells how her beautiful son lost his life waiting for a new heart.
Lewis was born in 2001 with an undiagnosed heart defect known as Hypo-Plastic Left Heart Syndrome. This basically meant the left hand side of his heart was under developed. At five days old Lewis collapsed at home and was rushed into hospital, his body in total shutdown.
We were given two options, either take our baby home to die peacefully or put him forward for three stages of open heart surgery. We were told this would not be a cure and eventually Lewis would need a transplant.
We knew we had to give our son a chance. He had stage one at ten days old, stage two at four months. Stage three was hopefully going to take place when Lewis was approx three years old...in fact the older the better. Sadly Lewis's health took a turn for the worst in December 2003. We were told stage three was no longer an option to risky they said, so our son was placed on the heart transplant list.
We prayed so hard for his bleeper to go off; it did not. In February 2004 Lewis collapsed and was admitted to Birmingham Children+s Hospital, and we were told he would have to remain there until a donor heart became available; his heart was on a knife edge.
Lewis got steadily worse; he collapsed again and again, how much could his little heart take? Each time the doctors prepared us for the worst, each time our brave boy proved them wrong and fought back. His consultant said he had knocked on heavens door but received no reply so came back. Our brave little fighter.
But we knew we were running out of time, still no call. Then one night Lewis arrested three times, it was so hard watching our son going through that. The doctors said that even if a heart became available Lewis was to weak to be taken out of intensive care, let alone survive an operation.
The time had arrived that we had always dreaded, April 6th 2004 we had to make the hardest decision of our lives; we had to turn off our son’s life support.
Lewis was two years and eight months. It was so unfair, he had fought it all; MRSA, infections, arresting; but when the time came, when he needed our help to keep fighting, when he needed a new heart...the system failed him.
So we now continually help promote organ donation. We cannot change the past, we cannot get Lewis back but in his memory we can help change the future...and that+s what we do.
The Prior Family now raise awareness about organ donation through the Lewis Prior Foundation http://www.thelewispriorfoundation.org/.
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