Thursday, 8 January 2009

My Autistic Son - Part 2 - the sick child

If you haven't already read it, I recommend that you read Part 1 before reading this.

We called our son Colm (an Irish name and the short version of Columba or Columbanus) for no other reason than we liked the name. Most people who comment on his name tell me how unusual it is, although the same people don't think Malcolm an unusual name. Malcolm means follower of Colm.

Colm was discharged from hospital when he was 5 weeks old, looking a little thin, but fit and healthy. He was a hungry baby and a couple of months later was soon the normal weight for his age. He started solid food at about 15 weeks and all seemed to be going well...until the 9th month. That's when Colm began to have an insatiable appetite. He was wanting to be fed all the time. “It's just a phase,” the hospital's health visitor said. “Just go with it. It won't last.” Within a month, Colm was obviously overweight. The Health Visitor told us not to worry – it would be a passing phase. Try giving him more drinks of water during the day. We were also told not to worry about the fact that Colm couldn't sit upright by himself – that was due to his prolonged stay in hospital at the start of his life.

By the 11th month, Colm was obese, and we were referred to the local hospital. Again we were told not to worry, but we had to limit Colm's food intake to help him go down to a more acceptable weight. We had to follow this diet no matter how much he cried. After the first day of his diet, Colm refused ALL solid food and would only take milk from his bottle. A week later, he was refusing to take anything but water. “Don't worry,” said the health visitor. “As long as he's drinking, everything is all right.” Soon afterwards he refused to take anything at all.

Now we were going to the hospital every couple of days for tests and to have Colm fed intravenously thus preventing dehydration. The tests only showed that Colm was a healthy baby. Still he wouldn't eat or drink. Nevertheless, we were still being told not to worry.

Here is a picture of Colm about this time. He doesn't look fat, but can you see how swollen his abdomen is? More on that later.

The ward doctor rang me up one morning, a couple of weeks later.

Hi there, I just wanted to let you know that the latest bunch of tests showed no abnormalities,” he said. “There seems to be no physical reason why Colm isn't eating or drinking.” He paused and sighed before continuing, “Perhaps it's time to look at other possible causes.”

What other possible causes?” I enquired.

The possibility that he is too upset to feed.”

Too upset to feed? What could make him that upset?”

Another sigh. Then, “This sort of thing has been known to happen in situations where the parents have been abusing the infant. What I'm saying is that we're going to have to refer this matter to the Social Services department so that they can look into it.”

I couldn't believe what I was hearing. Because Colm was now an extremely irritable infant, only quiet when asleep, I was at home for as much of the time as possible. I KNEW that my wife wasn't abusing Colm. And, of course, neither was I. Sandra and were very upset by this turn of events and it was an additional worry for us – as if we didn't have enough to worry about already.

Next morning, I had another call from the same doctor.

You need to take your son to the Royal Belfast Hospital for Sick Children straight away,” he told me. It was almost a command. “One of the tests has shown a very high level of white cells in his blood.”

A high level of white cells? What is the significance of that?” I asked him, forgetting that I was very angry with him for suggesting that either my wife or I was an abusive parent.

Well, I don't want to scare you, but all the signs are now pointing to your son having leukemia. I have arranged a bed for him there, and they are going to carry out further tests.”

He may not have wanted to scare me, but that's exactly what the doctor had done. I could think of nothing else but my son, dying from leukemia, as I drove with him to the hospital as quickly as I could, breaking all the speed limits on the way.

The infants' ward at the hospital was a rather grim place. It had the standard, pastel-coloured walls, grey plastic floor tiles and fluorescent lighting; but the management had tried to make the d├ęcor more cheerful by dotting cartoon paintings of animals, flowers and mythical characters on the walls. Instead of beds there were uncomfortable looking, silver coloured, metal cots with very high, thickly barred sides. Each cot had a couple of worn-looking chairs beside it. There was the constant sound of wailing infants and the smell of baby milk mixed with a chlorine-based disinfectant. Since parents and immediate family members of the tiny patients could stay with their babies or toddlers all the time, a waiting room had not been deemed necessary, but a small smoking room had been thoughtfully provided at the end of the ward. It was in this unhealthy, poorly ventilated room that I spent the next several hours, increasing the air pollution with my cigarette smoke.

Here I am, nursing Colm. I stayed with him as much as I could. Notice the lovely baby cot and curtains.

About 15 cigarettes later, a doctor appeared to announce that Colm most definitely did not have leukemia. However, he had a very swollen liver and spleen. Both were about 6 times normal size! Because of this unexplained fact and Colm's continuing refusal to eat or drink voluntarily, it had been decided that he should stay at the hospital for observation while they carried out further tests. So for the next couple of weeks, my wife and/or I spent all our waking hours at the hospital.

Colm spent his first birthday in the ward. It didn't seem appropriate to have a birthday cake or any sort of celebration for him at the time. He was a sick, unhappy baby, constantly attached to an IV feed. The arrival of a few brightly-coloured birthday cards to the ward only served to highlight the drabness of the depressing surroundings and made what should have been a joyful day even sadder.

A week later, I was at work in my electronics sales and repairs shop. It was about 3 p.m. when the phone rang. Eddy the engineer answered and then called me. “The hospital is on the phone.” I was hopeful. At last! Some news about why Colm is ill.

Would you like to come up to the hospital?” a female enquired.

Why yes, I was intending to come up in a couple of hours' time,” I replied.

Would you like to come up to the hospital sooner than that?” asked the female voice.

Well, I could maybe come in about an hour or so. Would that be okay? Is there something urgent?” I asked.

Your son is dying.”

Now read part 3.


Laura said...

You can't leave me on a cliff hanger like that ...!

Kit Courteney said...



Nechtan said...

That is a horrific experience Robert. On top of your worry that last thing you would have needed was all that anger and frsutration caused by outside forces. As a father I cannot think of anything worse than it being suggested that one of my children was being abused at home when you know they are not.

It is a really hard thing when you have to put blind faith in the people you believe know best when your own instincts are telling you otherwise. You knew there was something wrong so it must have been really frustrating to be getting no answers.

That phone call though you have ended with must be something that will stay with you for the rest of your life as clear as the day it happened. I cannot imagine what that felt like.

All the best


PS- I had never notived the obvious connection between Colm and Malcolm before. It is true what you say.

Robert said...

Laura & KC - next installment soon!

Necthan - You're absolutely correct about the abuse allegations. I couldn't believe that the doctor was accusing my wife & me of that! Later I felt like making an official complaint, but I had too many other considerations occupying my time.

I can still see myself in my shop on that fateful day, not knowing what was about to happen... It is etched on my memory forever.

Crystal Jigsaw said...

It really is a parents' worst nightmare. And being accused of abuse must have been a very difficult blow for you.

CJ xx

Robert said...

Hi CJ - Yes, it was a pretty tough time