… … … .. A TRUE STORY
Hi, this is Alex my grandson, he was born on December 23rd 2006 with a rare heart condition called Transposition of the Great Arteries. This condition is where the heart forms back to front, so oxygenated blood flows the wrong way slowly suffocating the child. It is extremely rare for children to live more than 4 weeks with this condition and it is always terminal unless treated.I hope it will be both informative, and helpful to those going through it or who have been through it themselves. It is also a tribute to the skilled surgeon, anaesthetist and nursing staff at Leeds General Infirmary, England.
This is Alex’s story as told by his Dad,
“A DAY NEVER TO FORGET – MONDAY 15TH JANUARY 2007
I was at work when the health visitor Sally called around to see how Alex was progressing. Marie and I had some concern regarding Alex’s feed as he was taking less than half the recommended amount of milk. He became tired very quickly during feeds. The health Visitor noticed how the ends of his fingers were pale, almost white even and made a doctor’s appointment for Alex that very day.
I received a call at work from Marie and took the rest of the afternoon off to go to the Doctors. Within minutes the Doctor had dialled for an ambulance, something he pointed out he never did on a whim. Holding an oxygen mask over Alex’s face as we sped to York hospital was very surreal but I remember not being overly concerned as it was suggested to be nothing more than a virus. Rushed into an empty room, Alex was ex-rayed and had bloods taken before being attached to various monitoring devices, one of which required the shaving of his head. There was very little protest from Alex but with hindsight this more likely because he was far too weak.
Two hours past as expert after expert crowded around his bed taking readings, monitoring him and discussing various courses of action. When the Ex-rays arrived the room fell silent, the silence you can almost hear. From where I was sat helplessly looking on I could see the picture of his heart, it looked like an upside down walnut, the Doctors laughed at the shape but under the humour they knew something was wrong, very wrong. We were taken to one side and told that the children’s unit at Leeds was far better equipped to help Alex and so an ambulance had been arranged to transport him to the hospital who also kindly paid for Marie and I to go by Taxi as there wouldn’t be room to travel with Alex. Another 90 minutes past as they put our little boy into an incubator that looked like a something from the 6 million dollar man, we watched him being put in the ambulance and be driven away, it would be three more hours before we saw him again. Neither of us spoke in the taxi, I just stared out of the window looking at star filled sky, I remember the odd cloud blowing across the night sky and for the first time a tear trickled down my cheek, Alex was not even three weeks old, what if it was his heart, what if I never got the chance to look up at a star filled sky with him.
Once at the Leeds General Infirmary we made our way to Ward 10 where we were quickly taken to the ‘Parent room’ where a nurse did her best not to tell us anything *(I mean that in a nice way) she told us Alex was still being examined, brought us tea and kept us company. 45 minutes later we were joined by the specialist, he was a very professional man, though coming across as cold I think it was more a way of switching off from the obvious emotional side, he handed us a sheet of paper with a colourful heart picture on it with the words ‘Transposition of the Great arteries’ in large bold black print and asked us to read it.
TRANSPOSTION OF THE GREAT ARTERIES.
Transposition of the great arteries (TGA) is a congenital (present at birth) heart defect that occurs when the large vessels that take blood away from the heart to the lungs, or to the body, are improperly connected.
Normally: oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped through the pulmonary artery into the lungs where it receives oxygen.
Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped through the aorta out to the body.
In transposition of the great arteries, the aorta is connected to the right ventricle, and the pulmonary artery is connected to the left ventricle — the exact opposite of a normal heart’s anatomy:Oxygen-poor (blue) blood returns to the right atrium from the body, passes through the right atrium and ventricle, then goes into the misconnected aorta back to the body.
Oxygen-rich (red) blood returns to the left atrium from the lungs, passes through the left atrium and ventricle, then goes into the pulmonary artery and back to the lungs.
Two separate circuits are formed — one that circulates oxygen-poor (blue) blood from the body back to the body, and another that recirculates oxygen-rich (red) blood from the lungs back to the lungs.
Other heart defects are often associated with TGA, and actually may be necessary in order for an infant with transposition of the great arteries to live. Openings in the wall separating the left and right sides of the heart, called atrial septal defect or ventricular septal defect, will allow blood from one side to mix with blood from another, creating “purple” blood with an oxygen level somewhere between that of the oxygen-poor (blue) and the oxygen-rich (red) blood.
What causes transposition of the great arteries?
The heart is forming during the first eight weeks of fetal development. The problem occurs in the middle of these weeks, allowing the aorta and pulmonary artery to be attached to the incorrect chamber. Some congenital heart defects may have a genetic link, either occurring due to a defect in a gene, a chromosome abnormality or environmental exposure, causing heart problems to occur more often in certain families. Usually this heart defect occurs sporadically (by chance), with no clear reason for its development.
“70% of patients born with Transposition of the Great Arteries are male.”
“The specialist told us it was a rare condition which could be operated on, it had a 98% success rate, but we could still fall into the 2% quite easy. It was made quite clear that the condition was fatal and without an operation Alex would die, I remember grabbing Marie’s Mug of tea as she let out a cry. The clock chimed eleven.
The operation was scheduled for a week in advance, and then only if Alex was strong enough, he wasn’t and his operation was brought forward 4 days. It was quite clear he had been diagnosed just in time. Luck was on his side though in a strange sort of way, because although his heart had formed back to front pumping the blood in reverse, he also had a hole in his heart allowing a small portion of blood to oxygenate, it was this hole keeping him alive.
He spent the four days in Ward Ten, others there were not so fortunate, having to wait months before their children could undergo surgery for the various heart conditions the ward dealt with. You looked at each in sympathy, knowing all too well of the journey they were undergoing, the fear, the worry, the anguish, the what ifs. Alex apparently had a good heart condition to have because there would be few after effects, if he survived. Not sleeping, and keeping a bedside vigil we hoped and even prayed…please don’t let us be in the 2 percent
THURSDAY 18TH JANUARY 2007
“The operation will take 9 hours, if he survives that there is a critical 48 hour period”
There were no visible signs of deterioration in Alex but each day became more of a struggle for survival, luckily we were living in the hospital and not sleeping we were there as much as was physically possible. The day before the operation we were given a choice whether to take him down to the anaesthetist, something we decided not to do at the time but would later change our minds.
The staff at the hospital actually ordered us to go out that night, we left mobile numbers and ventured to a nearby Bella Italia. Another surreal moment as we talked about everything but the operation. We discussed Alex’s future, where to go on holiday, the wine, anything until we couldn’t help but end the night and head back to his bedside. The clock handles seemed to speed up for the first time since our arrival and come 7pm Alex was called to theatre, where the clock stopped or so it seemed at the time. We did take Alex down to theatre in the end, walking the equivalent of the Green mile. We walked eventually into a small room, full of aproned and masked personnel, I verified my signature for the operation to go ahead and Marie reluctantly handed Alex over where he was placed on the table.
The anaesthetist placed the gas mask over his little face and for the first time he fought, legs lashed out, his eyes startled staring back at me begging for help and then he fell asleep and was rushed into theatre, that was it. We sat outside the room for a while, the nurse who was waiting to take us back to the ward, stood at distance quiet and respectful. The image of Alex in the anaesthetic room haunts us both to this day, no wonder they tried to put us off. Weeks later both Marie and I both said we hoped that wouldn’t be the last image we had of Alex, that look of hurt, did he wonder why we were letting them do that to him? Silly really but all sorts run through your mind, and it wasn’t over yet not by a long way.
Nothing can take your mind off the operation, reading, writing, nothing. We stayed in the room waiting for a phone call to say Alex was out of theatre. 6 pm was the time we had been given. Tick tock tick tock, drowning in tears I felt numb, helpless, somewhere my three week old son was having major heart surgery, how do they operate on something the size of a plum? Tick,tick. The phone rings, its one pm, our hearts sink to our stomachs, tears well in our eyes, shit, it’s too early it’s too early they shouldn’t have finished yet. I answer the phone, believe it or not it’s some idiot salesman who receives a not to polite few words. Tick tock tick tock, 2pm. What is he going through, I try to read Edward Rutherford’s Sarum, my stomach full of knot’s, I feel sick, the book fails to grab my attention. Tick tock, tick tock, tick tock, time continues to move snail like and we don’t even have a bedside to sit next to, I can’t stroke his little head, hold those tiny fingers. 3pm….6pm finally arrives and passes 6.15, check the phone is it still working…Yes its fine, quickly replace the receiver in case they try to ring.
Marie goes for some fresh air 6.20pm. All this time and Marie and I just couldn’t comfort each other anymore, when one broke down the other was strong.
6.25 the phone rings but I can’t answer it, I freeze like a rabbit in car headlights, what will they say, the phone continues to ring, swallowing a lump in my throat I choke on the word ‘Hello’
9 hours 20 minutes later and Alex was coming out of the theatre. I ran through 5 hospital corridors, took the lift down four floors and dashed outside the hospital, told Marie the news and we both ran back up to Ward Ten. Yes Mr and Mrs Boardman Alex’s surgery has finished but Doctor Watersson wants to see you first. And that temporary moment of euphoria was gone, we plummeted back to a world of uncertainty, had he survived?
The surgeon, Doctor Watersson sat opposite us with a thin smile. “Alex has come out of surgery, but I must tell you the next 48 hours are critical, there could be Brain damage, it’s rare but a possibility” He stood and held out his hand, I have no idea how many times I said thank you, shake his hand! I could have hugged him. What a genius.
At about eight o’clock we got to see Alex again, he was in Ward four now, He lay in his incubator fast asleep, bandaged hands and feet holding in various connections, a bank of at least 8 drugs, Morphine being one of them regularly dripped into him, wires ran to various gadgets and a sign had been stuck on his belly it read simply ‘Chest Open.’
I remember stroking his head and him moving, then the nurse saying it stimulates him and it’s too early for him to wake. so we had to sit vigil with no contact, occasionally a machine beeped and a nurse came over full of cheer to twist that, push this and attach the other. I didn’t care my son was alive.
Alex continued to improve daily, his skin was no longer white but a nice healthy pinky colour and eventually when swelling went down enough, the sewed up his chest better than the finest tailors! One morning we arrived in Ward four to hear that he had attempted to pull his tubes out his nose, he still hates things near his nose to this day.The crucial 48 period was passing and it was all good news so far, so to relax we went to the cinema, choosing The Last King of Scotland, not the most relaxing film as it happened but exceptionally good.
JANUARY 23RD 2007.
Was my 33rd birthday and I received a present that will never be beaten. Alex was taken back to Ward ten and for the first time in what seemed an eternity we were able to hold him properly. Surgeon Doctor Waterson informed us that he was happy with the progress and that there was no ill effects, Alex had come through with flying colours, his heart was the right way around the hole sewn up now he just needed fattening up.”
Alex and Nic
Thank you for reading this story – just one of thousands that was successful.
We also remember those who sadly lost the battle for life.