Sunday, 28 February 2010

Anastacia Callisto Tryfona

The short life of my second daughter, Anastacia Callisto, has taught me a great deal of things. Here's a poor attempt to articulate only one or two of them, as it is not easy to go to sleep tonight...

I don’t remember exactly when, but it was definitely after that twenty-week scan that I suggested Anastacia for her first name. Maybe in anticipation of a miracle - ανάστασις (anastasis) is the Greek for resurrection. Very appropriately as it turned out (she was a beautiful little girl), Catherine named her Callisto - most beautiful (and a moon of Jupiter).

Right now, the night before I let her go for ever, I have a vivid memory of that milestone, twenty weeks into Catherine’s second pregnancy that we found out about her condition. She had a diaphragmatic hernia, a hole in her diaphragm, which allowed stomach and intestine to enter the thoracic area restricting lung growth and pushing the heart aside. Survival depends a lot on how much lung function will be present on birth and whether it is possible to stabilise the patient in terms of blood pressure and heart function among other things.

Twenty weeks later, Catherine had a very difficult labour that lasted nearly four days and ended in an emergency caesarean section. The induction drugs were just not working, their bodies alike wouldn't produce that chemical signal required to initiate labour. It is admirable how she coped with such a tremendously painful process, demonstrating such determination and focus. I will always be grateful to her for going through this torture, only to deliver our daughter safely to the world so she could take her chance to fight for her life.

Anastacia was finally born in the bitterly cold, early hours of 12 February. She was born with very little reserve. Her lung function was really poor. She needed aggressive support with a power oscillator, a powerful machine that regulates the intake of oxygen to her lungs with a finer control than conventional ventilators. Small, controlled bursts of life-giving oxygen at a highly regulated pace. And she was marginally responding to the medication treatment that intended to stabilise her blood pressure and palpitations.

But she fought what seemed to be inevitable for two days, remaining critically ill but relatively stable, during the course of which the doctors at the University Hospital of Wales moved heaven and earth. When their available options were running short they involved a team from Glasgow's Royal Hospital for Sick Children, who in return invited another team from Stockholm. And the MoD offered a C130 to facilitate an attempt to transfer her in Glasgow to receive further treatment in a heart-lung bypass (an artificial lung machine) that might have improved her chances of survival. Her little heart however arrested and gave up just before she was due to move, as the Swedish team arrived with the portable equipment she needed to be able to travel. She died on the 14th.

Although we knew that her chances of survival were split from early on and tried to prepare for the worst with a 50-50 prognosis, that is impossible to do when it gets to that stage. Yes, the surprise element is not there - but the pain is. And you’re always optimistic that things will work out. But there are no words to describe what a father feels when receiving and preparing the dead body of his young child, if not for any other reason, for that gruesome horror alone that bears with it, the cruel denial of every parent's ‘right’: to depart before their offspring.

We are however comforted in the fact that she received loving care and attention by professionals who did not treat her case merely as doing their jobs, but truly cared about her and us. We were amazed at how medics in Cardiff, Glasgow, Stockholm left no stone unturned just because there was a poorly child somewhere. At how midwives were loving and caring. At how all staff treated us. At how people of all or no faith remembered her in their prayers and thoughts and lit candles for her around the world. At the unconditional love and care we received by our immediate family, the love and support of our close and not so close friends and the people who merely knew us or simply heard of Anastacia's case and struggle for life. We are grateful and humbled by this experience.

In nearly 36 years of life, I was approaching middle age whilst thinking that, maybe because of my profession, I was and would remain young in mind. Well, I'd like to think so anyway, but the reality is that I had caught myself many times feeling rather pessimistic and cynical about man and our nature. Self distraction, exploitation of others, racial hate and discrimination, competition for limited resources, war, the emptiness of mass culture, it’s not a great picture for man’s future, is it?

Yes, I now realise how in a true marker of ageing, I had gradually started losing that youthful enthusiasm surrounding some other facets of human nature. The one that makes us wonder what we are and where we come from. The one that makes us compose and enjoy music. The one that pushes us to explore new frontiers. The one that makes us appreciate others. The one that makes us compassionate. The one that makes us fall in love. The one that makes us willing to make a difference in life. The one that makes us what we are.

It may sound paradoxical but yet, in my grief and devastation, the death of my daughter Anastacia resurrected this trust and faith in man and life.

Indeed, because she taught me about decision making and responsibility. Opting to transfer her to Glasgow was originally a decision on a high calculated risk in the absence of portable ECMO equipment that, as it turned out, arrived from Sweden. Risking sending your child to its death away from you en route to further treatment, or sit by her side watching her dying in your hands waiting for a ‘late response’ miracle - that kind of decision making. I now find amusing bankers’ ‘important’ decisions about high-risk investment, or my ‘important’ decisions about buying a car, or moving house.

Because she also taught me that every little second of life is precious, that life itself is a miracle and fighting for it worth the pain that goes inevitably with it. She thus reminded me of how precious are moments - no matter how short - with our loved ones and how we usually take those moments for granted, as we are lost into the routine of our everyday lives.

And she also taught me how there is inexhaustible reserve in true compassion, solidarity and care in the people around me, how we are capable of the greatest things in life, as much as we, the same species, are capable for the worst. And I can only believe and hope that I will lead a life believing in this side of human nature, retaining that youthful look on the wonderful side of our existence. That one that makes us capable of such greatness, despite our unimportance in the universe. The one that Kazantzakis captures in this Zorba excerpt as (allow me to use the Greek version only for the time being please, I promise to translate it in due time for all):

Είμαστε σκουληκάκια μικρά μικρά, Ζορμπά, αποκρίθηκα, απάνω σ' ένα φυλλαράκι γιγάντιου δέντρου. Το φυλλαράκι αυτό είναι η γης μας∙ τ' άλλα φύλλα είναι τ' αστέρια που βλέπεις να κουνιούνται μέσα στη νύχτα. Σουρνόμαστε απάνω στο φυλλαράκι μας, και το ψαχουλεύουμε με λαχτάρα∙ τ' οσμιζόμαστε, μυρίζει, βρωμάει∙ το γευόμαστε, τρώγεται∙ το χτυπούμε, αντηχάει και φωνάζει σαν πράμα ζωντανό.
Μερικοί άνθρωποι, οι πιο ατρόμητοι, φτάνουν ως την άκρα του φύλλου∙ από την άκρα αυτή σκύβουμε, με τα μάτια ανοιχτά, τα αυτιά ανοιχτά, κάτω στο χάος. Ανατριχιάζουμε. Μαντεύουμε κάτω μας το φοβερό γκρεμό, ακούμε ανάρια ανάρια το θρο που κάνουν τα φύλλα του γιγάντιου δέντρου, νιώθουμε το χυμό ν’ ανεβαίνει από τις ρίζες του δέντρου και να φουσκώνει την καρδιά μας. Κι έτσι σκυμμένοι στην άβυσσο, νογούμε σύγκορμα, σύψυχα, να μας κυριεύει τρόμος. Από τη στιγμή εκείνη αρχίζει... [η ποίηση]

"We are little, minute caterpillars Zorba", I responded, "on a little leaf of a gigantic tree. This little leaf is our Earth; the other leaves are the stars that you see wandering around through the night. We crawl on this leaf, we search it with great anticipation; we smell it, it smells, it stinks; we taste it, it's edible; we tap it, it echoes and shouts like a living thing.

And some people, the more daring ones, reach for the edges of the leaf; from this edge we lean with our eyes open, all ears, towards the chaos. We shiver. We feel beside us this great cliff, we hear all of a sudden the sound of the leaves of this gigantic tree, we feel the juices flowing from its roots and our heart pounding. And leaning towards the abyss like this, we feel with all our heart, all of our soul to be taken over by a shiver. And from this moment… [poetry starts]"

I will. I owe it to my little Anastacia and to the people that loved and cared for her.

Anastacia Callisto Tryfona. A baby with severe congenital diaphragmatic hernia. Born at 3.24am on 12 Feb 2010 and died in the early hours of 14 Feb 2010. Safe journey my Darling.

1 comment:

  1. This sadly reminds me of our beautiful 8th baby Joshua James who was diagnosed with Hypoplastic Left Heart Syndrome at my 20 week scan. He sadly had one of the worst cases at birth and despite everyones efforts died when he was three days old.
    Letting go of your child is one of the hardest things we will ever have to do, yet like you, Joshua taught us so much. I now have 11 children. I cannot remember any of their first few days of life, yet Joshua's three days I can remember so vividly. We made the most of every single moment knowing those moments would have to last us forever.
    We have set up a very successful charity to help other bereaved parents since loosing Joshua, so his precious legacy lives on.
    God bless you and your beautiful Anastacia.