Health: The killer inside my baby boy

When Mary Higgins discovered a lump on her two-year-old son's neck, she feared cancer. She certainly didn't imagine it was TB
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The Independent Culture
My eldest son Sam was two years old at the time. A happy, seemingly healthy boy, he would not sleep through the night. Nothing strange about that: many children of that age have difficulty sleeping. In Sam's case, however, it was a little different.

I first noticed the lump on the side of his neck when I was dressing him for nursery one day. It looked as if he had swallowed a lollipop whole that had then got stuck in the side of his throat. He had a sniffle but was keen to get to nursery, so off we went.

I made an appointment with the GP who asked about any other symptoms, but there weren't any really. He thought that it was probably either a lymph gland that was enlarged due to Sam's cold, or else it could be a cyst. It didn't hurt when touched, and didn't bother him, so the doctor advised we should wait and see.

But a few nights later he awoke in obvious distress. He was crying and clutching his neck, and couldn't hold his head straight. He was running a temperature and his pyjamas were soaked with sweat. We were told to take him to hospital.

Sam didn't like the hospital, nor the many blood tests. And he certainly didn't like the cannula that was put in his ankle to allow the antibiotics that were prescribed to be injected. He pulled the first one out, even though it was covered with a bandage.

When he walked, he held his head to one side, protecting his swollen neck. Over the week he was in hospital, the swelling subsided a little, and he gradually recovered much of his usual vigour, though he still tired easily. When we left the hospital we had an outpatient's appointment as a formality. There was still a lump on his neck but he seemed much better, and the whole incident was put down as an "infection". I hoped that was the end of it.

At the outpatient's appointment, he was examined again. The lump seemed slightly smaller. The doctor wasn't sure what was causing it, but wanted Sam to have a Heaf test to rule out TB. We went to the chest clinic and Sam received his special "tattoo". We returned five days later for the result. The nurse confirmed that he had a grade three reaction. She explained that this didn't necessarily mean that he had TB, as the test isn't 100 per cent accurate. We were referred back to the children's outpatients' department.

The paediatric consultant explained that the Heaf test result meant that Sam had probably been in contact with someone who had "open" (infectious) TB, and it was possible that Sam had contracted TB as a result. Sam had an X-ray, but it was clear. As they couldn't be certain any other way, he said that he would like the surgeon to look at Sam for his opinion.

The surgeon said that he was pretty sure it was TB, although it could be cancerous. The only way to be completely sure was to take a sample of the tissue. He said he would schedule Sam as an urgent case for the following week. We would know the results two weeks after that. I asked if he would just do a biopsy but he said that it might as well be removed completely.

My father had had Hodgkinson's disease, a cancer of the lymph glands, and I could not bear the thought of Sam having this too.

On the day of the operation, we were seen by the anaesthetist, but the consultant who had told me he would do the operation was busy with another list so his senior house officer was to do it. This unnerved me tremendously, especially as this person had never seen Sam before. As he prodded at Sam's neck, which was as swollen as it had ever been, I could see that he was perturbed.

He explained he would be doing a biopsy. This was not what the consultant had said, and I told him that. Sam was in his gown on my knee about to undergo surgery and I needed some reassurance. I asked him where the consultant was and said that I wanted his opinion before the operation could proceed. He disappeared off while I hugged Sam close.

When he returned he said he had discussed it and because the lump was so big it would be impossible to remove wholly as a day-case operation, so a biopsy would be the best. I agreed and was asked to help hold the mask over Sam's face as he was anaesthetised. He was placed carefully on a trolley and wheeled into the theatre. The wait while he was gone was terrible, but although he was groggy when he woke up, he was grumpy but fine.

The two weeks we had to wait for the results went very slowly. In a way I hoped it was TB, because the alternative was much worse. It was about this time that I discovered that I was pregnant again.

The consultant didn't waste any time telling us the news. Sam had lymph node TB, and would require a lengthy course of chemotherapy. At least it was not cancer, but it was a potential killer. He told us that this was not a fatal form of TB, though treatment was slow. The scar from the biopsy would take a long time to heal and the lump would only recede slowly. But he would make a full recovery.

Sam had to undergo a course of antibiotics for at least six months but he was not infectious as he had "closed" TB. My husband Paul and I were a bit shell-shocked. We were now, effectively, on our own, the next appointment two months away. There was no support group, no leaflets, no number to call. No one else we knew had had TB, and although we were to have chest X-rays to ensure we didn't have active TB, there was to be no investigation as to how Sam had contracted it.

I trawled the Internet for sites about TB. I learned that it is the single biggest killer of humans ever, and that three million people still die each year from it even though it has been totally curable for over 50 years. I also learned how multi-drug resistant strains were now emerging that did not respond to conventional treatment. This is making the spectre of TB as an untreatable, fatal disease, once more a reality.

In the weeks before Christmas I noticed another lump on Sam's neck, underneath his biopsy scar. The consultant reassured us that the treatment was working. There was another lymph node enlarged, but that happened sometimes.

When we saw the surgeon, he told us he would like to try to aspirate (suck out) material from the second lump. I was a bit surprised, even more so when he got up and left the room without further explanation. Paul and I joked that he was going to do it now, at outpatients, with no anaesthetic. When he returned with a nurse and a large needle our smiles froze. We didn't have time to argue as he told me to hold Sam as still as I could. Sam, not surprisingly, protested and when the needle went in he tried to jump off my knee. It was one of the most unpleasant experiences of my life. As Sam screamed and struggled the consultant pulled the plunger out of the syringe, but nothing appeared. When he was satisfied, he withdrew the needle.

Sam, whimpering and shaking, refused to look at him when he tried to cheer him up. I was none to happy myself. The consultant said the lump would probably weep and discharge, but this was to be expected. A loose dressing was all that was required. He apologised to Sam but said it was necessary and he wouldn't be doing anything like that again.

At first the pin-prick seemed quite dry but a few days later the skin got redder and redder. A small hole appeared in the skin, which became very thin, and a creamy-coloured substance oozed from it. After a few weeks, it dried up of its own accord.

I had arranged to go for a chest X-ray to make sure I didn't have TB after I was 18 weeks pregnant. As it turned out the X-ray showed no abnormalities, and I subsequently gave birth (10 days overdue) to a healthy baby girl.

The last visit to the chest clinic was a happy occasion. Sam had put on weight throughout his treatment and was now looking like a happy, healthy three-year-old. As the consultant spoke to us Sam eyed the KitKat on his desk, and he gave it to Sam as a parting gift.