My love. My motivation. My heartache.

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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

 

 

59 thoughts on “My love. My motivation. My heartache.

  1. What a wonderful, gut-wrenching post. What a story. So wonderful to see that photo of your son, looking very cheeky and cute, and obviously HEALTHY and pink. What inspirations these little people are, and how wonderful is our country and our medical system that it covers our children for these very intricate, and very expensive, procedures.

  2. Makes you appreciate what we have! Thanks Carol.

    1. I’m lucky, my child is fine, a real man-mountain. I went to Canberra last weekend to visit Dainere, and I was cranky for days afterwards – for no good reason. At least that’s what I thought until I accepted that perhaps knowing one day I’ll be going back for her funeral … if you get inspired, please write on her blog. She is an unbelievably gifted young writer. She’s only 12 — her intelligence, warmth, compassion for others, lack of selfishness … this little girl just floors me.

      Can you imagine writing like this at 12? Or being this aware?

      http://www.dainere.blogspot.com/

      xxxx

  3. Thanks for sharing your story. So much detail…heck you are a journo. Loved seeing a photo of your little James at the end. I agree, thank goodness for our medical system.

  4. Wow. That was absolutely moving. Could not but help the tears welling up (and the occassional chuckle). Love your style. As many others have mentioned….really puts things in perspective. Thanks for putting it out there. Glad to hear the happy ending.

    1. Thanks Mark, there’s plenty of parents, and their kids, who aren’t as lucky as we are. Now THAT is perspective. 🙂

  5. I’m literally sitting here with tears streaming down my face, and as others have commented, I want to race down the road to school and give my kids just an extra squishy hug after reading that.

    I’m so glad James was able to get the expert medical attention he needed.

    1. Aren’t we lucky?! And I know how you feel, I often feel like that at work when I read a tragic or sad story about children in the newspaper. The desire to pick up my bag and go get my boys can be hard to fight!

  6. Oh … what a gorgeous little boy. So sad you had to go through all that, but thank goodness for the outcome. It’s times like these that we can really appreciate where we live … thank you for sharing.

  7. Hi Carol, I read your story and was instantly transported back to King George IV Feb 10th 1989, my beautiful 7lb3oz 2nd child Adrian was diagnosed 6hrs after birth with Transposition of Greater Arteries. Adrian and I were transported accross to Camperdown Childrens Hospital for Dr Celemeyer to perform a septal defect till the switch could be performed. Adrians Switch operation was performed on 16/02/1989. I was able to take Adrian home on 24/02/2010 and the Drs and nurses advise was traet him like a normal little boy, as now he is one.

    Forward to present day, My little (sic) Adrian is now close to 6ft, turned 21 last Feb and the proud father of a beautiful little boy, and soon to be a father again. He has 2 brothers and a sister and more importantly I would never be able to thank Dr Nunn enough, such a quiet man, but his skill is that of a Saint.

    We are definatly in the luckiest country in the world.

    1. Wow Holly, thank you for reading my blog and telling me about your ‘little’ boy! I have loved all the ‘evidence’ I’ve seen over the last few years about TGA babies that are all grown up! It’s wonderful. I few years ago I read about a young woman in the US who was about to become the first ‘switch’ operation baby to give birth. Wonderful! x

  8. Incredibly brave Mama you still are Im sure. Handing over you baby to the drs to operate is a flattening experience. Poppy had surgery again 2 weeks ago. Jy went in with her to hold her hand and she told him she was only a little bit scared this time. Is James in the clear? He is so cute. We are driving by in October and will/must arrange a visit:)

    1. Hi honey, you know, I’ve often said that. Doesn’t matter *what* the operation is, how big or little, same amount of sheer parent-terror applies. Yes, he’s fab, he needs checkups forever – just in case – but he’s great. And yes, you must come visit with your clan!!!!! xxxxxxxx

  9. oops meant to say Re: our health system

  10. I got this link off a RT on twitter from a Food critic…things you find! What a beautiful piece.I cried all the way thru. The universe chose not to let me have children but I have many nieces & nephews who I adore & I know the hurt I feel when I see them hurt so I can only begin to imagine what you experienced. Your son is simply adorable & I’d imagine you’d be celebrating every step & breath he takes everyday.Re: Damn straight – This really is the lucky country. Thankyou for sharing.

    1. Aren’t the interwebs fabulous? x

  11. Having spent hours sitting beside my son in a humidicrib.
    Having seen him come from my body and clearly not be in a good way – pink is great, purple is fine, blue is bad.
    NICU nurses telling me weeks later they were sure they were going to lose him that first night.
    Surgeries at 10 days old. Literally wrapped in cotton-wool to protect him from the cold of theatres.
    Weeks in hospital.
    Learning to breastfeed.
    Being on a labour ward with no baby.
    Leaving hospital with no baby.
    Finally able to take him home and so incredulous at being able to do so the first place we went was back to the original NICU he had been in to show him off.
    Our end story is not the story-book happy ending as such – our boy has a rare genetic disorder, cerebral palsy and a moderate intellectual disability.
    But that boy made me a parent. Made me a mum.
    He changed my life forever and continues to do so every day.
    I am indebted to those doctors and nurses who cared for him (and the ones who do so these days as well).
    Life.

    1. So many stories, Kim. Life. Is wonderful. Tragic. Inspiring. Heartbreaking.

      You never quite know what it’s going to throw at you.

      I’m not sure I’d have it any other way.

      I don’t want to live a ‘beige’ life.

      xx

  12. Thanks for the perspective just what I needed this afternoon. We are bloody lucky. I especially loved the part about natural versus ceasar and having no time for that debate. Absolutely agree, A friend recently tried to recruit me to the protest rally about Home Birth, I just couldn’t get on board. I needed to have an emergency ceasar and I will be electing for one next time.

    1. So much birth dogma … honestly … women feel too free to terrify other women sometimes.

      x

  13. Hi Carol

    I saw Jayne Kearney tweet this post earlier (although I also follow you on Twitter). What an amazing read and thanks for sharing. I was born with a congenital heart disease to my single, 21 year old mother. It has only been recently as I contemplate starting my own family that I have reflected on how truly harrowing that must have been for her at the time, and James’ story also brings that home. She has said that I was about 5 years old before she noticed in my medical records that they had drained all the blood out of my body while performing the surgery. For weeks after I was born she also thought I might die. It gets me teary even thoinking about my yet-to-be conceived child in such circumstances.

    Interestingly, in planning for pregnancy, I have been told that despite my surgery being a complete success, they’re not 100% sure how my heart will cope with pregnancy because babies born before me just died from my condition. It’s a rare condition so I will be one of the first to experience pregnancy with this corrected condition. I’m not frightened and I trust it will ultimately be fine, but it’s just so fascinating nonetheless.

    Thanks again, Carol.

    1. Hey Jess,

      A few years ago I read about the first pregnancy to a young woman who had the same operation as my son.

      Best wishes for you and your pregnancy plans! I’m sure you’ll be fine because you’ll be monitored closely during it all.

      And it IS fascinating! Don’t worry, the journalist in me wouldn’t stay quiet during the whole thing, even when the mother in me was in tears.

      xx

  14. I love seeing your beautiful James in the last pic. What a happy, healthy, gorgeous boy he is. And I couldn’t agree more about how lucky we are in this country. Damn lucky.

  15. What an amazing and, ultimately, beautiful story. Having just moved back to this wonderful country I can confirm that knowing we have the resources to help in those most shocking and painful times without fear of bankruptcy (or worse, no help at all) is a blessing that we should be grateful for each day.
    I’m so glad you shared this…and that James is also happy, healthy and getting up to the mischief all young boys should do!

  16. Oh Carol, even though I knew your story had a happy ending I was still teary-eyed, and actually quite anxious as I read this. What an harrowing experience for your entire family.

    The best bit? Seeing a pic of your absolutely, drop-dead gorgeous and, more importantly, healthy son at the end. You can see he really does have a special heart xo

  17. Being a parent. Being a mum. Opens you up to the dizzy heights of pure joy. And the underlying fear. I feel superstitious even writing it, but so far, my fear has been pushed aside and hasn’t had to come out. But – I tell you – when you’re a parent, you know you’re alive. I love the way you tell stories Carol.

  18. What a story. It’s funny the little details we remember, such as perfume and stuff, that form such a small part of the whole event, but are nevertheless etched into the memory.

    Reading this reminds me that we are so so lucky and grateful that our son’s two holes in the heart have largely healed themselves. Thanks again for your advice to me during my time of need 🙂

  19. I have to agree about our amazing Health care system.
    Not only do they treat the patient but they also have to treat the basket case parents. Our 1st son was born by emergency C section. I wasn’t allowed in & had to sit in the waiting room. After he was born the doctor came & told me he was in critical condition & they would let me see him for a minute before rushing him through to John Hunter. All I saw was a tiny body wrapped in foil & on a respirator as they raced him to a waiting ambulance. I can still hear the wail of the ambulance & although the sound seemed to be traveling so slowing. I kept thinking that while ever that siren wailed it was a signal that we have a live baby on board. I can’t remember how I drove to Newcastle & I remember walking into hospital thinking the worst but was greeted by a beaming nurse who said that my son was going to pull through & within a few hours I had my hand in a humidicrib with a tiny hand gripping my finger.
    Our 2nd son was perfect but when he was 17 he got Leukaemia. The Staff at the Mater were amazing & they always went out of their way to treat & inform.
    The Dungog/Maitland pallative care team are the best & I saw on the news that Australia is one of the best in that department as well.
    Here in Australia whether the news is good or bad you are assured of the best care possible.

    1. David, my husband made the drive – on his own – at 1am following the rescue helicopter to Westmead. I don’t know how he did it. I thought he was going to have an accident because of his own distress. It was a crap night.

  20. Speechless. Thank you for being the person who shares. Sharing puts life into perspective. Brad x

    1. Too much information? Thanks for heading an organisation that tries to answer these godawful questions.

  21. I couldn’t read this and not comment. You see, your story is what mine so easily could have been. My second son was born with heart defects (a missing tricuspid valve and transposition as well) but I was lucky – a random minor car accident at around 35 weeks led to me getting a late ultrasound and the guy noticed that my son’s heart wasn’t symmetrical. I had 3 weeks to see specialists, find out what the plan might be and get my head around the idea that there was something wrong with my soon-to-be-born baby.

    Those 3 weeks made a much bigger difference than I would ever have thought. I’m so glad your story has a happy ending, mine does too.

  22. Absolutely beautiful, Carol. xx

  23. Touching, absolutely touching. Hard to imagine what you went through.

    The surgeons are the real miracle workers in this world particularly the paedeatric variety.

    It’s great he is doing well these days, I’m sure he will get to a ripe old age.

    Chris 🙂

  24. Oh. Oh, wow. I had NO idea that you went through all that. My son was born with a twisted bladder & had to have surgery almost immediately after his birth- and I thought *that* was scary, but this…. those photos are brilliant. That final shot of him brought tears to my eyes. My sister is a paediatrician specialising in neonatal emergencies… I have just emailed her this blog but I know she’ll love the way you thank those unknown doctors, and because she will rejoice in your success, in your and James’ great escape. What an incredible blessing.

  25. That was a beautiful, gut-wrenching, heart-warming (no pun intended) story, beautifully told.

  26. Fantastic to hear you and your son both came out of it OK. So many stories…. My wife and I went through a bit of hell when our eldest daughter (now almost 21yo) was born but they’re both more than OK.
    Thank you so much for sharing your story because we all need to hear them and be reminded of just how fortunate and blessed we are.
    All the very best and all God’s blessings to you and your family.

  27. Amazing story. Beautiful boy. I’m with you – healthy mother + healthy baby = the only birth ‘experience’ worth having. So glad there was a happy ending.

  28. That first photo is not the way you want to see your precious baby.
    “Oh you’re off the radio, aren’t you?” Hillarious.
    “He may last a few days …”
    Bless your little boy. And bless all those wonderful doctors who cared for him.
    “the size of a hair”?
    Oh my God, that picture of them operating on his heart.
    Yes we do live in a lucky country.
    What a story Carol.
    When you talk about your boys again, it will never be the same.
    Thank you for sharing.

  29. What a moving post Carol. We are so very very lucky in this country that I fear we sometimes can’t see the wood for the trees, such is the luxury of complaining.

    We had 24hours of absolute terror when I had the 19 week scan for my second pregnancy. It was obviously nothing at all to compare with what you have been through, but it gave us a tiny glimpse into a parent’s worst fears. The sonographer had found an abnormality with our daughter’s kidney and the OB wanted to ‘take another look’ to check through all the major organs to establish whether there was extensive (or any) damage to the heart/lungs and the extent of the kidney problem. We just had to wait until the next day for that next sonogram. So many things, and yet nothing at all (except sheer worry) went through my head for that period. When they had given us the all-clear for the major organs, we then had to wait until after she was born to rule out kidney surgery and whether she would have ongoing problems. Philip Buckner was our paed as well – what a lovely, soft-spoken man with such a beautiful manner. Prasaad was my aneasthestist too. Various tests later, we had the best possible outcome for our girl – only one working kidney but it was a beauty, and it’s all she needs. Apart from a hip issue, she was in good working order. I sat with another mum at the hip clinic who was in tears at the thought of having a baby in a brace (as mine was), of having an anything-other-than-perfect baby. She had bought all these 000 clothes that wouldn’t fit around the brace. I could not have been happier to sit in that clinic to get (free) treatment for a totally non-invasive, fixable problem, especially after having glimpsed what could have been. Sometimes it is about perspective, which can be easy to lose. Thank you for sharing yours.

  30. Sharkbait rocks! Beautiful raw post. I want to ask how this affects you now. How did you recover from this? Does the trauma recur? What about Peter? How did he cope? And Alexander, was he aware of what was going on? Sorry …so many questions. I think you may need a follow-up post.
    Love
    G

    1. “Sharkbait!” LOL .. yes, he does. Interesting questions you pose. I’ll do a follow-up at some point. Does the trauma recur? Kinda. Pete and I have what we call ‘Muppy moments’ (he has a selection of nicknames, mostly Mup)’. These are like sudden waves of short, sharp depression that engulf you and make you catch your breath as you realise what a close call it was. Grief? Maybe, even though we still have him it doesn’t erase what we went through at the time. Similar to the occasional sad spots I have about my mum. Suddenly – the carpet is ripped out from under you, the wave closes over you, you hit the sand and wonder, briefly, if you’re going to make it to the surface or if your number is up. A surfing analogy for you, Waxhead!

  31. Beautiful Carol…thank you for sharing your gorgeous boy’s story .Though I am sorry that your family & James had to endure it at all.
    As a paediatic nurse I have several memories of sending infants and newly diagnosed CHD babies a few months old to Westmead (and Camperdown) for heart surgery. I can still remember most of these babys’ names after many years…above all other babes.
    Yes we are so fortunate to have access to some of the best medical care in the world for next to nothing.

  32. Thankyou for sharing your touching story.
    Prasad is a funny man, and his magic helped my wife get through delivering our stillborn son.
    Looking at the picture of your beautiful boy, he looks a lot like what I think Lucas might have. You are lucky, but we all feel the limits of human experience, ups and downs, at some point. It must have been an unimaginably hard time. We have two beautiful girls now.
    It’s always amazing to hear someone’s most private and powerful stories. Thanks Carol.

    1. Oh Rob … I just cannot imagine. There are so many ‘babylost’ mamas and papas. My heart goes out to you and your wife.

      Feel free to borrow The Ninja anytime you want smelly, rough boy games – he works for treats!

      xx

      1. Hehehe, will consider it! 🙂

  33. […] This post was mentioned on Twitter by Wolfie Rankin, Rob Hayes, Craig Eardley, Nick Ellis, Helen Tzarimas and others. Helen Tzarimas said: Special. RT @carolduncan: Was writing, avoiding #masterchef – here are the fruits of my labour for you. Warning: graphic. http://ow.ly/2ep8N […]

  34. Wow, Carol. What a gorgeous boy you have in your life – and a strong little fighter to get through all that. Must get it from his Mum 🙂

  35. Carol, you and James the ninja are inspirational. Australia is indeed the “lucky country.”

    Life can be more than tough at times and the feelings of despair that accompany those times can be overwhelming and destructive.

    Thank you for sharing your story, your courage, your hope, your despair, your love for your son.

    xxx

  36. WOW. I totally felt like I was going through that with you. My step daughter had a similar problem, which, obviously I wasn’t a part of. I really felt your pain and distress and now know what Mike & his exwife would have felt like when Kylie was born. Thank you for sharing. He is a beautiful boy who I’m sure will live to 100! xx

  37. Powerful poignant and passionate piece of written & visual excellence which has both uplifted my spirits and made me more aware of what we take for granted in our first world “lucky country” thank you carol

  38. Great blog Carol, and another reminder of how lucky we are to have some of best medical people in the world working here. What a stressful time it must have been, seeing your newborn going through such a major medical crisis. James is such a gorgeous boy, and has such a great spirit. Like you, we count our blessings every day at how lucky we are too.
    PS Prasad looked after me the second time, and yes he was just fabulous and hilarious!

  39. Excuse me while I spend some hug time with my daughter, back in about 14 years. Thanks for this inspiring story.

    1. Yes, hello, welcome and love to your new girl.

      You have entered the ‘vulnerable’ zone. You are now vulnerable in ways you never imagined before becoming a parent.

      But it’s worth it.

  40. Thank you Carol. Your words were perfect. Your beautiful boy is perfect. And I really needed to read something like this to pick up my straps and stop fucking whinging about the little things. I had forgotten how lucky we are to have what we have x

    1. Nah, I still whinge. He’s a normal kid who gets in the normal amount of shit as any other kid. But yes, I don’t sweat the small stuff so much and I will forever wear my heart on my sleeve.

      Love, and be damned.

    2. Beautiful story never forget how lucky you are it was 10 years ago tomorrow that my 4 year old baby started chemotherapy at Westmead without the best healthcare system in the world we wouldn’t have a 14 year old that is blazing a trail and is healthy Hdthanks to weekly infusions of immunoglobulin – expensive to the nation but priceless – hundrDeds of Doctors a medical record that takes mulitipletrolleys and a zest for life can’t fault our health system and get mad when it is bagged by Johnny with a stubbed toe if a kid needs it now they get it now there’s no wait if it’s urgent and if need be they rewrite the manual tomake it work. I have wriitne his story mostly for him to explain why he is different and needs
      mess etc and you have inspired me to finish it til now and publish it

      1. I look forward to reading your son’s story, Marian.

        1. Thanks Carol just figuring out how to shorten without lossing relvance – he’s my hero

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