Lives lost waiting

LEWIS PRIOR

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

We found that Lewis did not feed well and seemed to sleep a lot.  The midwife said he was just settling in, but after five days things hadn't improved - only a few ounces at a time and then back to sleep.  Our midwife told us she would go and get some different teats for Lewis’s bottles.  She returned two hours later and held our son up to the window as she wasn't happy with his colour.  At that exact moment Lewis collapsed and went all floppy in her arms; he wasn't breathing properly.  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 surely it wasn't happening to us.  One minute we were all at home with our four children, getting used to family life again, and then we were whisked off to special baby care and our new born 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 and 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 had his first stage of open heart surgery at ten days old.  He had stage two at four months and caught (and beat) the MRSA superbug twice.  Once Lewis was discharged we did have a period of normality, even though he was on ten different kinds of medication which started at 6 am through to midnight.  We managed to take him and our other children to Euro Disney on his first birthday, a birthday we had not thought 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.

Lewis began retaining fluid which caused 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.  He would need to go to Great Ormond Street hospital (GOSH) to be assessed to be placed on to the heart transplant list.  We remember being shocked at the words “to be assessed” - not all children are accepted on to the list due to other medical problems.

In December 2003 we arrived at GOSH.  Lewis had been through so much in his short life, but 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 tried to return to a life of normality and we waited, making sure we had a fantastic Christmas.

February 2004: After catching a cold Lewis was re-admitted to our local hospital with breathing problems.  Whilst they were trying to take blood he collapsed again and stopped breathing.  Again we were sent to Birmingham Children’s Hospital Intensive Care Unit.  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.  Every time the phone rang we would think it might be Lewis’s call but it wasn't.  Days turned into weeks and then 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 in intensive care.  We willed 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.  Still the telephone did not ring.  Our son had been through so much; 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, but not one of them could do anything for him until he got that call.

6th April 2004: We were told that there was no more they could do for our son; we had to let him go.  We heard the words but could not take it in.  They wanted us to turn off our son’s life support - how could we do that?  We begged for one more day - the call might come.  They said he was by then too unstable to move from intensive care in any case.  So at 11.30 that day we had to make the most difficult decision of 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 old.

I do believe that our donor system works but it could work a lot better.  Our son should not have died; he should have been given another chance.  He fought so hard, but when it came to the stage where he needed support from others, 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 raise awareness of organ donation whenever we can.  It’s not about us - it's about our brave son.

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