On August 5th 2001 our beautiful fourth child came into this world weighing a healthy 8lb 1oz, Lewis Jack Prior. After the normal newborn tests we were given a clean bill of health and discharged from hospital, Lewis was twenty four hours old. We were very excited about returning home to our other three children, Kelly, Andy & Tom, and they could not wait to see their new baby brother.

We found that Lewis did not feed well, and just seemed to sleep a lot, the midwife said he was just setting in. But at five days old he still did not feed well, a few ounces at a time then back to sleep. Our midwife told us she would go and get some different teats for Lewis’s bottles, the same ones he used when in hospital. She returned two hours later and held our son up to the window as she said she did not like his colour. At that exact time Lewis collapsed and went all floppy in her arms, he was not breathing properly and an ambulance was called.

The next few hours were and still are like a slow motion dream, we could see it all unfolding before our eyes but it was not happening to us, it was someone else. One minute we were all at home with our four children, getting used to family life again, then we were whisked off to special baby care and our newborn was ventilated, with wires and tubes all over his little body. We were told Lewis had a serious heart defect, Hypoplastic left heart syndrome. Basically the left hand side of his heart had not developed properly. His tiny body was in total shut down. Our local hospital in Shrewsbury had to transfer Lewis to Birmingham Children’s Hospital for palliative surgery. They warned us he may not survive the journey. We were told Lewis could have three stages of surgery which should hopefully take him into adulthood, his only other option then would be a transplant.

Well he did survive the journey and after lots of tests he had his first stage of open heart surgery at ten days of age, he had stage two at four months, he caught and beat the MRSA superbug twice, but once Lewis was discharged we did have a small bit of normality. Lewis returned home, and although he was on ten different kinds of medication which started at 6 am and his last dose was midnight, we managed to cope and get into a routine. We even managed to take him and our other children to Euro Disney on his first birthday, a birthday we did not think we would ever see. We took him to the seaside, safari parks and the zoo, even though we had a very sick child we were determined to treat him normally. It was not always easy, but we had our four children together and that was all that mattered.

From Shrewsbury to Birmingham and on to Great Ormond Street Hospital -

travelling in hope.

Lewis began retaining fluid, which meant he puffed up, which gave him problems with his breathing. He was again taken to Birmingham Children’s Hospital where, after an echocardiogram, they informed us he had a severe leak in his tricuspid valve. His third stage of surgery was no longer an option as they thought it too risky. They told us we would have to go to Great Ormond Street hospital (GOSH) to be assessed for Lewis to be placed on to the heart transplant list. We can remember being shocked at the words “to be assessed” - we were told that not all children are accepted on to the list due to other medical problems.

In December 2003 we arrived at GOSH. Lewis again had to be prodded and poked in order for them to assess his condition. He had been through so much in his short life; he was always happy and smiling. He was a fighter. After what seemed like an eternity we were given the news that Lewis would be placed on to the transplant list. We were given lots of information and issued with a bleeper and sent home.

We tried to return to a life of normality, it was so important for us to allow Lewis and his brothers and sister to have normality. We carried on with his medication and we waited. We made sure we had a fantastic Christmas.

February 2004: After catching a cold Lewis was re-admitted to our local hospital with breathing problems, it was here whilst they tried to take blood that he collapsed again and stopped breathing. Doctors and nurses came from everywhere. Again we were sent to Birmingham Children’s intensive care. After five days Lewis was off the ventilator and on the ward. But this time we were told he would have to stay in hospital until a donor heart became available.

Day after day we sat with him in his room, each time the phone rang we would think this is Lewis’s call but it was not, days turned into weeks, and into months. We wanted to get that call so much, but we felt guilty because we knew that for our son to live another family had to lose their child. Mother’s Day 2004 was the last day I had all my four children together, yes it was on the ward but they were happy.

A few weeks later Lewis collapsed again. Again he was ventilated on intensive care, willing him to fight and stay with us, willing the telephone to ring. On a regular basis we were called to intensive care in the middle of the night by staff to tell us to come straight away as he had arrested again, each time he fought back but each time it made him weaker and weaker, and still the telephone did not ring. Our son had beaten off MRSA twice, infections, bugs of all sorts. His consultant said he had knocked on heaven’s door but got no answer, so he came back.

Now he was in a room, surrounded by medical staff and not one of them could do anything for him until he got that call. We prayed and we bargained with God - perhaps now we did silly things but at the time we would have done anything.

April 6th 2004: We were taken into a side room and told that there was no more they could do for our son. We had to let him go. We heard the words they were saying but could not take it in. They wanted us to turn off our son’s life support - how could we do that? We said one more day, the call may come. They said even if it did he was too unstable to move from intensive care. So at 11.30 on Tuesday April 6th we had to make the most difficult decision in our lives. We turned off our son’s life support and cuddled him as he slipped away from us. He was two years and eight months of age.

We feel he was let down by a system that does not work properly, a system which needs looking at, more awareness. Our son died needlessly, he should not have died. He should have been given another chance. He fought so much on his own, but when it came to the stage where he needed support all we could do was watch and wait for a call that never arrived. We are his parents we should have been able to do something, no parent should outlive their child.

We set up The Lewis Prior Foundation in Lewis’s name. We raise awareness of organ donation to whoever will listen. It’s not about us but about our brave son. We believe a change in the current donor system is a much needed thing. We aim to support a change and have Lewis’s name connected to that change. We refuse to let our son’s death be in vain.

Please visit www.thelewispriorfoundation.org by clicking on the family's trust logo below:

Transplants can save lives money and misery,

but for the Prior family their hope turned to despair.

Which alternative would you want for your family?

If you support organ donation prove it -

ring 0300 123 23 23 now.