Joseph Alexander Piper
Neonatal pneumococcal meningitis at one hour old
While living in Cyprus with our two boys aged nine and 11 we prepared for the arrival of our baby. Joseph Alexander was born six weeks premature, at the height of the tourist season, in September 1992 after a troubled but fairly uneventful pregnancy. When Joseph arrived it was immediately apparent that he was struggling to breathe and he was quickly diagnosed with Respiratory Distress Syndrome. Joseph did not cry but I was assured that he was okay and all would be well in a few hours. At this point we did not know whether to celebrate joy at his arrival or express sorrow at his distress. So I said thank you to God for him and asked his help for our family.
Joseph was then transferred to Hospital Archbishop Makarios III in Nicosia. My husband went home, and I got some sleep. We were expecting Joseph back in Limassol before breakfast: after all, his visit to Nicosia was a precaution, nothing else. But I was woken in the morning to be told that I being taken to see Joseph, and that something was wrong, I instantly knew that he was seriously ill. It was a shock to hear the staff at the hospital in Nicosia tell me that I couldn't possibly be Joseph's mother because he was so poorly, and the mother should be very poorly too! Joseph was being cared for in the Neonatal Special Care Unit; he was in isolation, hooked up to every kind of monitor possible and on 'life support'.
We decided that he should be baptised as soon as possible. It was from this moment that we began to live in a sort of 'unreal' world. Caring and keeping things as normal as we could at home for our other two children was most important. For the next six weeks I made the two-hour round trip to the hospital on my own. The Cypriot Hospital did not normally allow parents to see such a sick child but made an exception for me because I was English. Alan and the boys only saw him once during the next six weeks when he was 23 days old.
Joseph was diagnosed with Neonatal Pneumococcal Bacterial Meningitis at three days old and suffered heart failure on day five. He also closed his eyes on day three and did not open them again for three weeks. Our hearts were broken for him - what sort of life would he have?
Following an MRI scan when he was about two weeks old, devastating brain damage to brain stem and cortex was confirmed. We were told he was to be taken off life support overnight and that we should await a phone call to tell us when he had died. All we could do that night was pray for ourselves and him. No such call came, so in the morning I drove to the hospital where his doctor sat with me, and as tears ran down his face he said, "He should not have breathed, I've never known this happen before, I don't know what to do, as in all my years of looking after babies not one in his condition has ever breathed on his own before". I found myself comforting the doctor as Joseph flailed his arms around in an effort to breathe whilst fitting continuously.
Joseph had Encephalitis and needed fluid drained from his head every three or four days. He needed 'tube feeding' and large adult doses of drugs to slow his fits. Daily blood samples were taken from his stomach to ascertain whether he was in pain. Joseph had no reflexes, was almost certainly blind and deaf and was a 'cold temperature' baby. We had trouble keeping him warm in temperatures of over 32 degrees centigrade. He was quite probably the only baby to have a hot water bottle in his pram in the middle of the summer! But we loved him all the same. I tried to keep a certain detachment from him and was almost afraid to get too close.
We knew Joseph would not live long, a couple of years at the most it was suggested, if he had several operations. We made the heartbreaking decision to bring him home from hospital when he was six weeks old and not accept any operations. As a family, we got to know and love Joseph during the next very precious five weeks. Joseph died peacefully at home aged 11 weeks. His cause of death was from Bronchial Pneumonia and he is buried in Cyprus.
It was some years later before we heard of the Meningitis Research Foundation. We have no doubt that we would have benefited from their support during our family's time of need. We did, however, have the support of a good chaplain who helped us every step of the way. I understand the need for a 'listening ear' and wholeheartedly support the work of the Foundation.
I now help the Foundation so that others may recognise the signs and symptoms of the disease and the speed at which it can develop. I now realise that the signs aren't always easily recognised in newborn and especially premature babies. From the time of conceiving Joseph to the time of his death and burial life was like a dream. Everything stopped and was put on hold: nothing was more important than our family and letting our other boys have time with Joseph to talk, hold, love and push the pram. We extended our personal love and care to him after death by not sending him to an undertaker or having his body embalmed. The Military Hospital looked after him until, on the day of his burial, we closed the coffin ourselves.
Our memories of our son are not quite so average but they are ours and we still often cry. Time may travel by, but the memory does not. We cry for ourselves because of what could have been in our dreams for him. We remember with joy the people who helped us then and still do. We remember the people who enjoyed holding him in those precious five weeks at home and are glad to have had such a special child.
My life is in turmoil I don't know what to do
this thing that has happened I can't believe it's true.
The child I gave birth to is tenacious and tough
he clings to this life, though the going is rough.
He is so very tiny and fragile as glass,
if he stays in this world his illness won't pass.
The Doctors can't help him although they all try,
and my hope it gets dimmer as the time passes by.
I don't want to lose him, I've given him my heart,
but if he's to move onwards, then we must part.
I can't bear the pain, the hurt that's inside me,
but I'll make it through, with friends and family beside me.
Written for Wendy Piper by Rona Griffiths (1992)