James at 8 days - immediately after surgery

James at 8 days – immediately after surgery

Maroussia.  The perfume.  Russian.  Cheap.  Strong.  Not bad if you’re into cheap, strong Russians.  (Ahem.  My husband is half-Russian … )

What’s that got to do with the rather graphic photograph of my youngest son?

It’s one of my strongest memories of this traumatic time.  The intensive care nurse assigned to James wore Maroussia.

It’s rather strange going through this two inch thick file of his medical records.  So many names – ‘service providers’ – that I don’t recognise.  Which is because most of the people involved in his care over that mad two weeks I never actually met.  Reams of bills and invoices, tens of thousands of dollars worth.  Reams of medical records which detailed his every breath, every movement – and mine – during that time.  Measurements by the minute.  A thoughtless comment by a nurse who couldn’t possibly have understood what I was going through watching my son fight for his life.

Dr Cooper.  Were you one of the anaesthesiology team?

Dr O’Grady?  No idea.  Sorry.  Dr Sunjoto?  Dr Dennis?  Dr Taylor?  Doctors.  Lists of them.  Nurses.

I have no idea who you are or what you did for my son, but thank you.

Dr Buckner.  I clearly remember you holding up my newborn son for me to see and saying, “He’s perfect!”  Which, of course, he was.

Until he went blue.

Dr Shumack.  I had no idea that you didn’t know until months later that something had gone wrong.  I have a photo of you holding my my wailing son.

“He’s perfect!”

Dr Nunn.  You, sir, are a true hero.  I told you once –  as you were sitting on the floor playing with my then six-week old baby – how grateful I am that there are people like you who are brave enough to put their great big hands into tiny little chests to try to fix delicate broken hearts.  I have no words for you.  Just gratitude.  And Dr Hawker, Dr Halliday, Dr Poki.  And countless others.

Blue.

I have no patience with the ‘natural birth vs caesarean’ bullshit.  Quite frankly a healthy mother and baby is *the best possible outcome* and if you disagree with that, you’re reading the wrong blog.

We had gone into the birth of our first son well-prepared, hoping to do it the old-fashioned way but accepting that sometimes things don’t go to plan.  Birthing centre was booked.  Bags were packed.  The day arrived and off we went to have our first child.  To cut a very long story short, after two days of labour an emergency caesarean delivered a gorgeous baby boy who had been starting to become a little distressed.  You should have seen his mother at that point!

Two years later and a different ob-gyn who asks me how I felt about that first birth.

“I_want_a_caesar_thank_you_very_much_I’ve_thought_about_it_there_is_no_way_in_hell_I’m_doing_that_again_so_we’ll_do_this_MY_way!”

So on the appointed day we drove to the lovely private hospital because I was doing it all differently to the way the first one had gone and I was not spending another 48 hours in labour.

It was actually really enjoyable.  A fantastic cast of medical characters who sail through caesars each and every day.  Jock – who I suspect could do these with his eyes shut.  Prasad – the funniest, most entertaining anaesthesiologist this side of anywhere.  “G’day, I’m Prasaaaaad … what would you like?  Spinal or epidural?”  Oh, you mean I get to choose?  Then Prasad to his assistant, “Can you just hold that book open to page 7 so I can see how to do this again?”  Very funny, Prasad.  No, really.  I like your style.  You give great spinal.  A nurse from somewhere behind a mask, “Oh you’re off the radio, aren’t you?”  Me, “Not from that angle I’m not!”

Literally minutes later my husband said to me, “Oh, he’s nearly out, I’d better take a photo!”  True story.  Best. Caesar. Ever.  Thank you to everyone involved.

That brings us to the blue bit.

“Pink is good, blue is bad!”  No shit, Sherlock.

“Sticky lungs … we’ll pop him into the nursery with some oxygen for a couple of hours and he’ll be just fine.”  Oh, OK … well I guess I could do with a stitch or two at this point so I’ll just get that tended to while you get my boy’s lungs de-stickied.  “He’s not improving.  I think it might be a problem with his heart.”  Phil, our paediatrician.  I suspect Phil felt like a shit at about this point after earlier telling me, “He’s perfect!”  Phil, however, not only worked out that it was likely to be a heart problem, but also which specific heart condition.

“Transposition of the Great Arteries.” he said, perched on the end of my bed.

What?  Is that bad?

“Yes.” said Phil and he proceeded to do a little illustration for me to explain that my baby son’s heart was, in a word, fucked.  His aorta and pulmonary arteries were switched.  “He needs surgery – this is incompatible with life.  He may last a few days …”

I hadn’t held my little boy yet.  And it would be another two days before I did because later that afternoon they wheeled him to my room in his humidicrib on the way to the ambulance that would take him to the John Hunter Hospital for further tests and to await the neonatal transfer helicopter.   I gingerly put my hand through the little porthole on the side of the humidicrib and stroked his head.  Reeling.  In pain.  Physically and emotionally.  Raw distress.  Still paralysed from the ribs down.  Unable to go with him.

I had heard of ‘holes in the heart’ before, but the enormous world of congenital heart defects was completely unknown to me.  I feared that I would never see my son alive again.  I feared that he would die before I got to hold him.  Before they got him to the Children’s Hospital at Westmead where they would attempt to save his life.

James prepared for emergency flight to Sydney

Being freshly post-operative, they couldn’t let me go with my baby boy.  They transferred him to the John Hunter Hospital where the cardiologist, Dr Warner, arrived to examine James’s heart and prepare him for the transfer to Sydney with the neonatal intensive care team.  On arrival James underwent a balloon septostomy – basically a procedure to create a hole in his heart to allow his fresh and ‘blue’ blood to mix and to allow oxygenated blood to travel through his body.  Something that hadn’t been happening since his umbilical cord had been cut.

“Transposition of the great arteries with the aorta lying anterior and giving rise to a left aortic arch …”

I was transferred to Westmead by ambulance the following day – still not able to hold my new son.   Still believing he was going to die.  Shocked beyond belief.  Grieved beyond words.  How could such a tiny being possibly survive what they were saying needed to be done to him?

“Open his chest, sever and swap his aorta and pulmonary artery, and then sever and move both of his coronary arteries … the size of a hair in a newborn … ”

Eight days old.  That’s when his surgery was scheduled for.  The septostomy was to allow his blood to receive some oxygen and our job was to feed him up and await this enormous and frightening operation.  An Arterial Switch Operation – the ‘Jatene’ procedure, only successfully performed for the first time a decade or two earlier by a Dr Jatene.  Until his devised this operation, the only other surgical options were palliative.  OK, but not great.  Not a ‘fix’ or a repair.  But sometimes enough to allow people to survive to adulthood.

“Bypass time: two hours and twenty nine minutes.  Aortic cross-clamping time: sixty eight minutes.  Core temperature: twenty eight degrees centigrade.  Cold blood cardioplegic arrest of the heart together with topical cooling repeated each twenty minutes ….”

They stopped my son’s heart.

James’s heart – taken from Dr Nunn’s headgear camera

I can’t really remember how long it took.  Hours.  I spent a good part of it with my head under a blanket in the parent’s hostel at Westmead.  Terrified that my son would die.

I’ve done some pretty tough stuff in my life.  Trying to resuscitate my mother is up there with the toughest.  But I think walking to the theatre with my tiny boy wrapped in a blanket and *handing him over* to the people who were going to cut his chest open and stop his heart … that was rough.  I can’t remember who we handed him to.  I think it was one of the anaesthetists and a perfusionist.  Perfusion.  This is what they call getting you onto a heart-lung machine.  One of the reasons this sort of heart surgery is relatively new in babies is their tiny size.  Their hearts are the size of a walnut, their arteries and veins are very small and they simply don’t have enough blood in their bodies to actually get through the plumbing circuit that is a heart-lung machine.  Donor blood is required to ‘prime’ the machine.

“Bypass was established with distal aortic cannulation with venous drainage through separate caval cannulae …”

James’s surgery was very successful.  A complete repair.  He will have to have checkups for the rest of his life but his life is normal.  He plays sport, he does whatever he wants to do.  He has a ‘zipper’ and a few other interesting scars to go with it.  He is well.  This was not an easy time.  But he is well.

What I know now is that 1 in 100 children are born with a congenital heart defect.  Some minor that will never require intervention.  Some truly terrible that they will never survive.  Some live with a degree of disability all their lives.  Sometimes short lives.  We are very lucky.

“I then released the aortic cross-clamp and de-aired the heart through the original cardioplegia delivery site.  The heart returned spontaneously to sinus rhythm and the patient was re-warmed as the pulmonary artery was being reconstructed.”

What’s the point of sharing all of this with you?

We’re fine.  James is fine.  They ‘re-plumbed’ him!  He remains warm to this day and will hopefully stay that way until he is at least 100 years old.  He assures me he is going to be 100 one day.  His heart is great.  He suffered no brain damage – something that sadly is common when people, young or old, go onto heart-lung bypass.  To a lesser or greater degree.

I have written this to remind myself that I am lucky.  My son is lucky.  Lucky to have been born in this country, at this time, with a healthcare system that meant that our final bill was $26 for a can of special formula to take home to help fatten James up – he’d lost a bit of weight during his two weeks in hospital.

In other parts of the world, babies like my son die.  Simple as that.  There are no surgeons, no Medicare, no hospitals or helicopters or heart-lung bypass machines.  No blood.  No anything.  They die.  And in other parts of the world where these things might exist but you have to pay for them – if you can’t, your baby dies.

So.

Tell me again how bad things are here?

James 2010

 

** Update **

 

James – 2018