Saving Little Hearts

Prior family heart story came from http://www.thelewispriorfoundation.org with permission from heart mom, Karen Prior.

Lewis was born on August 5th 2001, he was our fourth child. At 5 days old Lewis collapsed & we were rushed by blue light to the Royal Shrewsbury Hospital Special Baby Care. Lewis's whole body had gone into total shutdown, he was transferred to Birmingham Children's Intensive Care Unit, it was here we were told he had a condition known as Hypo-Plastic Left Heart Syndrome, this basically means the left hand side of his heart was underdeveloped.

He suffered a mini stroke, and at ten days old underwent the first of three stages of major open heart surgery. He remained on I.T.U, caught the MRSA Virus and was extremely sick. He had his second stage of surgery at just three months old, three to four months earlier than children with this condition generally have it. In December 2001, Lewis was transferred onto a ward, to spend his first ever Christmas in hospital, we traveled the 100 mile journey every day to be with him, or stayed with him which obviously meant being away from our other three children.

In January 2002, Lewis was transferred back to Shrewsbury hospital, then eventually allowed back home. We had to learn how to feed him through a feeding tube and give him his heart drugs, he was on eleven a day. Our day started at 6 am and he had his last drug at midnight, but at least he was at home.

Lewis needed to go for a routine catheter, they needed to balloon his aorta, the procedure generally takes half an hour, but Lewis arrested twice during it and was again place back on Intensive Care and we were once again on the emotional rollercoaster ride, living at Birmingham Children's Hospital, away from our family. He amazed doctors again by bouncing back so quickly and we again took him home.

The 5th August 2002, a day we thought we would never see, Lewis celebrating his first birthday with his family at home,we had a brilliant day, as we did for Christmas that year. From that time until August 2003 apart from the odd setback Lewis remained in reasonable good health, we even took him with his brothers and sister to Euro-Disney we had a fantastic time, with loads of brilliant photographs and memories.

Things started to go downhill December 2003, Lewis caught a simple cold, whereas with us a cold is stated 'simple', to him with his condition it is extremely serious. He was re-admitted to Shrewsbury Hospital and it was there during a routine blood test Lewis collapsed in our arms, and stopped breathing. Again back to Birmingham Intensive care, and he was place onto the Super urgent heart transplant list at Great Ormond Street Hospital.

He again amazed doctors and was after only four days of being ventilated back on a ward sitting up, smiling and eating, but obviously extremely sick. We were told his heart was on a knife edge, he could collapse again at any time and he had to remain in hospital until a heart became available. We were there for six weeks, praying for the call to come but nothing. Sadly Lewis collapsed again and was back on the Intensive care, we knew we were running out of time, he was on I.T.U for nearly three weeks, ventilated and on more adrenaline than a child of his age has ever been on. In the last week he arrested six times, three times in one day!

Still no phone call, and the day we had been dreading arrived, we were taken into a side room and told by doctors they could do no more for our son, even if a heart became available Lewis was far too unstable to be moved to Great Ormond Street Hospital. Our prayers had not been answered, our son had put up such a brave strong fight, we are so proud to of been his mum and dad, but still on Tuesday April 6th 2004 our beautiful son died in our arms, he was just two and half years old.

Its still very raw, still very hard, good/bad days, but we refuse to let our sons death be in vain, we intend to keep Lewis's name in peoples memories. So we have opened The Lewis Prior Memorial Fund, we help raise the much needed funds for the two hospitals that did so much for our son and helped give him the two years of life we know we were very lucky to have had.

Shrewsbury Baby Special Care/Children's Rainbow Ward, and Birmingham Children's Heart Unit are the two hospitals, we are an ongoing concern, and been issued with a Registered Charity Number. We make a yearly donation of £500 to Edward House, this donation helps with the upkeep of a room in Lewis's memoryAlso we now make a yearly donation of £500 to Hope House childrens hospice to help with the fantastic work they do there.