A military man I know who is also a man of the cloth, recently fathered a half-hearted child. The child is a boy. Although the boy is now four months old I cannot tell you his name: as well as heart-deficient this boy is nameless. Into the vacuum where a name should sound and resound I have secretly named him Bert.
Bert was born with an Hypoplastic Left Heart. Of all the congenital heart defects consistent with life, this is the most severe. When early prenatal scans demonstrated the defect, doctors warned the mother and father: The child might not be born alive. Of all the cities in the world to be born thus, Melbourne might be the very best. For in this location the very worst heart enjoys the very best outcome. And Melbourne is home to the Royal Children’s Hospital, where the cardiac surgeons achieve results superior to other centres around the world. Paediatric surgeons from the greatest hospitals in the USA perform the same procedures but without the same success. Their specialists visit the RCH to learn how the Melbourne team does it.
When my soldier friend told me of Bert’s heart condition my own heart sank. Without an adequate left ventricle circulation is critically impaired, the baby is breathless and often blue. The situation is serious, prone to deteriorate rapidly. Surgery of the highest intricacy is needed with critical urgency. Further surgery will follow within months, and more still as the child grows. If the child grows.
But Bert’s family are strangers to despair. Their faith buoys them. They pray. Their large family prays, their congregation prays, sister congregations join in a tidal wave of prayerful hope. The soldier father sets about studying Hypoplastic Left Heart Syndrome. He interrogates the cardiologist, the cardiac surgeon, surgical texts and research papers in the learned journals. Meanwhile baby Bert lies in Intensive Care puffing mightily, as his too little heart labours to circulate oxygen-poor blood around his body – most crucially to his brain.
The baby undergoes his first operation. Some hold their breath. Others pray. Bert comes through.
The nurses ask, ‘What’s his name?’
The parents reply, ‘We haven’t given him a name yet.’
‘When will you?’
‘When he’s fit enough we’ll circumcise him and we’ll give him his name.’
The nurses are confounded. They’ve come to love this little baby who puffs and puffs and keeps pulling through. Love demands a name. Administration demands a name. A non-name is given, a name for nurses to love him by, a name for administrators to administer by. Obeying the same imperative, I looked at the bony little battler and secretly started calling him Bert. But his true name, the name that will come to him dynastically or by parental vision or by revelation is not known. The day is not yet come.
A close bond weaves itself among the team that comprises on the one side a mother, a father, bigger brothers, grandparents, uncles and aunts, and on the other, a cardiac surgeon from Belgium, a cardiologist with a Chinese name, ultrasonographers, physiotherapists, cardiac nurses. The father masters and explains to me the eye-watering anatomic detail, embryology, circulatory physiology and pathology as well as the sequence of cardiac surgeries that is needed for Bert to live and to grow. And (in the locution of the family), God willing, to undergo ritual circumcision and to receive his name.
When I visit Bert in Intensive Care, I find the usual grim intent of such a Unit softened. A tenderness prevails, a gentleness, the amalgam of a family’s faith and the distinctive ethos of the institution. It is in Paediatrics where you find the kindest clinicians, and human sensitivity at its highest. The Chinese cardiologist procures for himself a religious almanac so he can know the dates and times when the family will observe Sabbaths and Festivals. He doesn’t want to cause them needlessly to contravene the strictures of telephony at such times.
Bert learns to smile. An MRI searches for hypoxic and other brain damage and finds none. Bert learns to suckle, taking in nourishment made specifically for him, taking in too, mother love, mother touch, smell and sound. Bert lies at his mother’s breast and feels that heartbeat that reassured and made him through the months that he grew, until he came into the world without a fully formed heart. Bert’s bony cheeks begin to flesh out, but he gains weight painfully slowly. The cardiologist explains Bert’s heart has to work so hard it burns up almost all the energy he consumes. The date of the second surgical operation must be brought forward, lest a wonky heart valve be damaged further.
The soldier rabbi father and I became friends when he himself was a runted collection of skin and bones and spirit, aged four years. It was he who knocked on my door one Sabbath morning with a request from his mother to visit his sick sister in their house around the corner. That sister was sped to hospital that morning, never to return to her home. None of us has recovered from her ordeal and her loss.
Tomorrow, or as soon as an Intensive Care bed becomes free, the baby son without a heart and without a name will undergo his next surgery. If you are the praying kind, spare a prayer for him. You can call him Bert.
This meant a lot to me. This year a young man got married. Both his older sister and younger brother were born, and died, of Hypoplastic Left Heart syndrome. I heard about the sister in 1978 as I was nursing my healthy newborn daughter, and knew something of the mother’s agony. When the younger brother was born in 1982, he survived for three months and they made an attempt to operate, but the skill and knowledge to succeed was still in the future. I am willing Bert to survive.
When we met in 2015, we talked about our children’s children… my daughters had not yet chosen to have babies. Now, we are expecting one grandchild (half Jewish) in a month’s time and another (half American) in 6 months time.
What joyful news!
We reach a rich time in our lives when we become grandparents
It’s a time when our children use their sexual organs for our pleasure
Grand parenting is the best job I’ve ever had
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With elation for you
Very had his op two days ago and welters in heavy seas as he recovers
Doing moderately well
His parents remain immoderately brave
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Thank you Francesca