With the growing pressure to reduce the number of specialist cardiac teams operating in the UK, I decided it was time to open up an old wound and share my story, so those people making decisions at arm’s length, might take a different view and alter their strategy.
I also hope my story, with extracts from my diary will give others faith and hope if they are faced with a similar journey through hell and back that I endured in 2003.
Anger and guilt: a volatile combination, the former often resulting in aggression the latter in self-flagellation; so together they can be an explosive mix.
Fortunately for me, and everyone else, I vented my fury on the clothes horse. It was the first thing I came across as I made my way through the house in an effort to escape the news I had just been given by Great Ormond Street Hospital.
But there was no escape for me, my husband and more importantly, my son. His condition was critical and they had organised immediate hospital admission.
The clothes horse was trashed. The date was 26 March 2003, 46 days before my son’s 3rd birthday and 1 day after I had become angry with him for not wanting to go swimming.
The day I was told my son had a serious heart condition:
partial atrioventricular septal defect (AVSD)
dysplastic left atrial valve
“The only way I can deal with this is to forget it, pretend the doctor didn’t say it, just keep pretending …
I feel so guilty forcing him to do things like swimming”
Dates, days, hours and minutes would, over the next few weeks, be an essential element of my and my son’s everyday life.
- 27 March Great Ormond Street Hospital for tests
- 28 March 2pm Arrived at GOSH
- 29 March More tests
“It’s weird. I feel like I’ve put myself into some kind of automaton world, somewhere that
is reached when you have to function outside normality …”
- 31 March 8.30 Gowned up and prepped for the operation
“I told him the nice people were going to make him better today”.
10.45 We are told the op is cancelled because they found an infection in his blood test.
- 2 April Operation day. H still has the infection but the surgeons decide the risk of delay was higher than the infection risk
11.45 The procedure starts
Have you ever said goodbye to your child as they wheel them into theatre?
6pm The op is finally over
The team tell us what happened and that H still has a long way to go, in other words, they are preparing us for the worst.
- 3 April 4.30am We are woken and asked to return to the hospital. We fear the worst has happened. The surgeon tells us:
“His heart has taken such a hammering during the operation, it was just too tired”
His tiny heart was not coping so they had to put him onto the Extra Corporeal Membrane Oxygenation or ECMO machine
- 4 April His blood was not clotting correctly and they gave him a brain scan
The pacemaker was removed and the paralysing drugs reduced
- 5 April “I’m so excited!”
11.25am “His hand and mouth moved”
9.45pm “His hand was literally waving in the air and he opened his eyes! Amazing!”
“There’s a guy here, about 60 I’d say, his son is in the next bed in a worse condition than H and has been moved from one hospital to another awaiting a heart transplant”
- 6 April The ECMO machine is removed
“It’s like having a new child develop in front of you. I so want to talk to him and he to me”
- 8 April “I’ve been thinking about earlier days here, when he was attached to the ECMO machine, how alien he looked, mechanical, like a robot being repaired. He has a food tube in his nose…I have been wondering about the effect of having a tube poked into his delicate little nose covered in plasters for so many days”
“The guy who’s been here for 2 weeks has just told me his son has little hope and he’s been asked whether they want to switch off the machines. What a choice? How do you make that sort of decision?
I didn’t know what to say and felt guilty about my happiness.”
- 9 April 2pm They closed his chest and reduced the paralysing drug so he could wake up
“That was a little unnerving because he was moving his hands, arms, head, mouth and eyes.”
His little body looks so emaciated
- 10 April The chest drains are removed
“H is aware something is not right, he knows he is in a strange place. He cried today which was difficult for me”
We are told this is something we are going to have to face and deal with because they want to bring him round soon.
- 11 April H is more awake but more distressed
“They put him in my arms but I don’t think I’ll do it again, when they remove the feeding tube it upsets him”
- 12 April H is still on the ventilator and part of his lung collapsed
- 13 April I am hauled over the coals for questioning staff and not following hospital protocol
“I gave them a profound apology because it was the only way. I was terrified it would affect my son’s care”
- 15 April 11.30am Taken off the ventilator with the caveat he may have to go back onto it or even have another operation
10pm “So far he’s done brilliantly”
“God it was amazing, he said ‘mummy I want to sit on your lap’ so most of the day spent
with him on my lap. Wonderful!”
- 16 April Moved out of ICU to ward. They removed the pacemaker wires
- 21 April “A day of celebration but also concern”
We are discharged
“Very nervous about giving the medication”
- 22 April H stood unaided today
- 24 April Check-up at GOSH. Liver remains enlarged
“He walked from the hall to the kitchen”
- 28 April H walked without any help and stayed in his own bed tonight
The large scab on his chest bothers him
- 1 May Life is starting to take on a more ‘normal’ routine
- 3 May H is showing much more enthusiasm for taking part in things even if it’s just going on the roundabout at the playground
- 11 May A day I feared he would never reach – his 3rd birthday
“He was genuinely excited. He didn’t stop all day”
Things progressed each day; it was just like having a new baby but with a fast-forward button as we saw the return of all the things he had done previously.
The guilt will never leave me, the months of making him do things, sometimes as simple as climbing the stairs at bedtime, when all along he was not being a difficult toddler, he simply was unable to do it.
But for the decision makers, who think our cardiac teams should be reduced, look again; look at the story of my son. I now have a strapping no holds barred teenager who lives life to the full. OK he still has a leaky heart valve but I wonder, had you gone ahead with your closures in 2002, would I too have had to make that impossible choice the man next to us had to make.
Perhaps if we had less people making financial decisions we could retain the people who make the important decisions.