Tuesday, 13 January 2009

My Autistic Son - Part 3 - a medical mystery?

If you haven't already read them, I recommend that you read part 1 and part 2 before reading this.

Here is a picture of Colm when he was staying in this attractive cot at the Royal Belfast Hospital for Sick Children, when...

The Royal Belfast Hospital for Sick Children hospital was quite close to my shop, so it wasn't long before I was in Colm's ward. I went straight to his cot. He wasn't there! I fought panic and nausea as I made my way to the Staff Nurse's room, as prepared as I could be for the worst news.

Immediately recognising me, the Staff Nurse told me that I had a very sick little boy and ushered me into a side ward. Colm had been transferred here, out of sight of the other tiny patients and their parents. My wife, sat beside him, looked up at me briefly, wordlessly, for a moment. Colm was lying prostrate and motionless in an oxygen tent with a plethora of tubes and wires attached to his little naked body, his perfect white skin exuding a deathly pallor.

But he was still breathing!

I was suddenly gripped with an incredibly intense emotion. My body convulsed internally and tears began to stream down my face. I sobbed uncontrolably. Colm looked so helpless.

The side ward was of claustrophobia-inducing dimensions. There was room for a bed (not a baby cot), a bank of winking, beeping electronic equipment at each side of the bed, two armchairs, a small bedside cabinet placed beside the side wall and not the bed, an intravenous drip and just about enough room to access them all. The ubiquitous fluorescent tube lighting was atypically dim – perhaps on purpose?

The door opened and a doctor appeared to look at Colm's charts. He appeared agitated and tutted softly.

Is Colm improving?” I enquired.

The doctor assumed his poker face. “Difficult to say” he replied ambiguously.

But he's not dying any more?”

There's always hope.” Then, pulling a non-beeping pager from his pocket and looking at it, said “I see I'm needed in another ward” and promptly exited.

Almost immediately after the doctor left, a couple of nurses appeared and removed one of the armchairs, replacing it with a recliner and a couple of thin, white, infant-size blankets. “You'll be wanting to sleep here”, one of the nurses said by way of explanation.

During an uncomfortable night, Sandy filled me in with the day's events. She had gone out for a short break from sitting beside Colm. She needed a cigarette and he was sleeping. On her return, he looked “different” she said, so she picked him up. As she lifted him, he gave a “sort of sigh” and went totally limp. There was a nurse nearby who noticed this and called in the emergency team. Colm's heart had stopped and they tried for several minutes (but seemed to Sandy like several hours) to get it going again. Just as it seemed that they were about to give up, Colm gave a kind of noisy wheeze and then began breathing erratically. He was placed in an oxygen tent. After some tests, they told Sandy that they had discovered that Colm had become anaemic and that his blood had an irregular composition, so a series of blood and platelet transfusions followed.

Next morning: “Oh, I see he made it through the night. We didn't expect that.” It was a different doctor, checking Colm's charts.

Is he going to live, then?” I asked.

Latest blood tests results are good, pulse is good, respiration is good. I think he's going to make it. We'll know better in another 24 hours.”

So what exactly is wrong with Colm?”

Well,” said the doctor, “I'm sure you can see that your son has an enlarged abdomen.” He nodded towards my son's still form. “That's because his liver and spleen are massively enlarged. If they were normal size, you wouldn't see them at all. To simplify matters, we'll say that the liver manufactures new blood and the spleen destroys the old, tired blood. They act together so that the blood supply remains constant. Except in Colm's case. For some reason that we don't know, Colm's liver and spleen have not been working together. His blood supply has gone up and down, and components in his blood haven't been at the correct levels either. When he was admitted here, he had too many white blood cells and leukemia was suspected; but then that changed to too few. Yesterday he had almost no platelets - that's the cells which are required to give blood its clotting properties - and we had to give him a transfusion to correct that.”

If it had been happening before, why did it become life-threatening now?”

The doctor shrugged his shoulders. “We don't have all the answers, I'm afraid.”

So will this happen again - is this going to continue like this?” I enquired.

Oh, I don't think it'll happen again. Our hope is that Colm's liver and spleen will eventually reach a satisfactory equilibrium and work normally after that,” the doctor replied.

And that is what happened – as far as I know. Next day Colm was pronounced “out of danger” and the reclining chair was removed from his room. A week later, he was home again.


We didn't get visited by social workers or child protection officers, so I think that the accusing doctor had a change of mind.


The following year I was chatting to my cousin about Colm. My cousin, whom I saw infrequently, was a consultant in the adjacent adult hospital. “Ah yes,” he said, “I remember hearing about that incident. Didn't know it was your son, though. Apparently there was some cross infection in that ward. Nearly killed your little one!”

This information is not on Colm's medical notes.

Now go to Part 4


diver said...

What a harrowing tale, and well written too. That cross infection connection must have just staggered you!

Nechtan said...

Our son was born premature and hooked up with lots of wires which broke my wife's heart every time she called- unfortunately I never saw him in person, only in photos at the time. But we knew why and we knew he would be OK however helpless he looked. To have this happen out of the blue with no explanation why and no clear indication of the outcome must have been a real shock to the system. The helplessness must have been crushing. I cannot even begin to contemplate how the two of your felt in that situation. And it sounds like the situation was not helped by somewhat aloof doctors- maybe the later discovery explains why.

The information you got from your cousin must have really numbed you. Just what do you do with that except get extremely angry but also know that no action can change what has already gone.

It really is heartbreaking to read what you went through. It is all so vividly written that I would imagine it is still as vivid in your head.

All the best


Crystal Jigsaw said...

I'm sat here shaking my head in disbelief at your last para. The reason for this is because when my daughter was born, within a few hours of her birth she started to, what I describe as, fit. I am epileptic so naturally I was worried that Amy had epilepsy too. I had two peadiatricians check her out before concluding that she was fine and it was "normal" for my new born to do this (I questioned it too).

Two years later, I had my daughter wired up twice whilst having an EEG. Fortunately both tests proved negative but by the time she was 3 and a half, she was diagnosed with autism.

Two years ago I requested hospital records from when we stayed in following Amy's birth. None of the records gave any mention of two paediatrians checking her out and there was no mention of my concerns about Amy "fitting".

Sorry to go on!

Bless you,
CJ xx

Robert said...

Diver - Until my wife & I were accused of child abuse by the hospital doctor, I believed that hospitals were trustworthy. Finding out about the cross-infection made me more wary about what health professionals were tellng me, and Ive been that way since.

Robert said...

Nechtan - Looking back, it was a stressful time; but at the time I just carried on and did what was needed to be done. However the memories are well and truly etched in my mind.

Robert said...

CJ - I guess that since the NHS is staffed with ordinary folk with ordinary hope & fears, the deliberate or fortuitous omission of data which could be detrimental to one's career or risk a law-suit is to be expected. It is unfortunate that it happens though, because those affected by "mystery" happenings never (or rarely) find out exactly what happened.

rosiero said...

What a worry it must have been for you to go through that with such a small baby.

Robert said...

Rosiero - as you well know from your own experiences, you just cope with the situation - whatever it is - at the time. It's only later that you realise how much it took out of you.

fizzycat said...

Good grief.Glad your son recovered.

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