The alphabet of pain

There is a flicker of understanding in the three-year-old boy's eyes when Dr Rene Albertyn gently speaks to him in Afrikaans.

Despite the fact that his head was penetrated by a gun bullet, which caused serious brain damage and left him both blind and deaf. And despite the fact that his file reads: "potential for progress: zero".

If it weren't for this energetic researcher, and her breakthrough in the measuring of pain at the Red Cross Children's Hospital, he would have been in a lot more pain. His shoulders, which are pulled up almost against his face, wouldn't have been noticed by doctors and nurses. The same can be said for his clenched fists and his blown-up stomach.

What's more, he would probably have died alone.

Albertyn passionately gesticulates as I accompany her and her team on their hospital rounds: "If there wasn't a pain team here, what would have become of him? And why are we the only team in Africa who monitors children's pain? How many children are suffering because the knowledge just isn't out there?"

She sighs. "And where does one begin?"

A switch to her 'original calling'
In the case of this dark-haired woman, a finalist in the health category of the Shoprite Checkers / SABC2 Woman of the Year Award, one starts at the very beginning.

In terms of her goals, she has already progressed to such an extent that her research has led to the development of the first paediatric pain unit on the continent. And this research is watched with bated breath by the western world.

In her cosy office, filled with teddies, papers and even her bicycle Lazarus, this native of the Northern Cape explains how she has learnt to decipher the language of pain.

She started off studying radiography, but "it was the saddest year of my life".

She switched to her "original calling" – social work – and in her second honours year, she started to specialise in medical social work.

Shortly thereafter, she started working at the Red Cross Children's Hospital as research social worker under the supervision of legendary paediatric surgeon Prof Sidney Cywes.

She smiles. "I remember that my English was quite poor, and that I didn't know anything about research. But, after I lost my own father to lung cancer, I adopted Cywes as my father."

The hospital soon became a second home to Albertyn. "People like Cywes, Prof Heinz Rode (head of paediatric surgery at the hospital) and Dr Jenny Thomas (head of narcotics) literally raised me. In their eyes, nothing was impossible for me."

In the early 90s, Cywes started motivating her to do her Master's through the University of Cape Town. During the course, her focus was on the use of children's art in the measurement of pain. She frowns.

"It was a very cheeky topic, since many of the children I worked with couldn't even draw a picture. In contrast to developed countries, the children weren't sufficiently stimulated that they could use symbols to communicate their pain."

But then she made her actual breakthrough. It started with a complaint by a nurse about the intense pain suffered by the young patients at the out-patient ward for burn wounds.

"Rode asked me to look into the complaint, but nothing could have prepared me for what I saw.

"I felt like Dante plummeting into the pits of hell. I saw 28 children who all screamed simultaneously, and parents who also looked as if they were about to die. The nurses were at their wits' end, and there was so much fear in the unit that my heart started to beat faster."

As it was impossible for her to describe the level of suffering, she made a video, consisting of 15 minutes' footage of children as their dressings were changed.

She becomes almost teary. "I showed the video one Wednesday morning at the hospital, and said that I didn't understand what I was looking at. Jenny was just as desperate. Nobody realised it was so bad."

'We didn't want to see this pain'
Before you could say "knife", Albertyn and Thomas put together a protocol for the handling of pain at the Red Cross. They were, however, in unknown territory.

She takes a breath. "In Europe and in America, every hospital has a pain team and a pain clinic. It's a job, and a science. In South Africa, there are clinics that pay attention to adults. But at that stage, nobody had looked at the pain suffered by children. It was almost as if we didn't want to see this pain."

She soon realised that it was almost impossible to treat pain if the intensity of it couldn't be measured. Such a measurement was complicated by the Babylonian confusion of languages and cultures seen at the Red Cross. Many of the children didn't develop as they should. As a result, they couldn't say in how much pain they were.

"I realised that we knew nothing. Most of the pain measurement techniques developed overseas couldn't be applied here. Abroad, parents are more there for their children, and children are more exposed to hospitals and medical equipment."

A pause. "Also, in the western world, the scales measure only pain. Here, we have three things that need to be measured: anxiety, pain and discomfort."

A new pain scale developed
Albertyn didn't let it get the better of her. As part of her PhD, this time at UCT's medical faculty, she developed a pain scale that can read the anxiety and pain of children with burn wounds as their dressings are changed.

What's more, this scale was the first to distinguish between pain and anxiety, and it enabled doctors such as Thomas to prescribe a complex combination of pain medication.

She's excited when she explains: "Instead of having to press the children down when their dressings were changed, as was always done before, the anxiety was minimal and the pain was gone. The big thing that everyone noticed, however, was how quiet it suddenly was. Previously, you could even hear the children screaming from outside."

But her work still wasn't finished. She was worried that the children's bodies were being treated, but not their souls. "When you see a burnt child and you realise what lies ahead of him, your heart breaks."

She frowns. "By treating such a child, you give him his life, but you also take life away from him.

"From a moral perspective, it isn't right to heal a child with serious burn wounds and to know you're sending him back into a society that will reject him."

A pain unit brought to life
As a result, she made the first rehabilitation unit for children with burn wounds in Africa a reality in 2002. Apart from Albertyn's input, this unit also relied on the work of volunteers and was largely financed out of Albertyn's own purse.

She makes a sweeping gesture. "But you never own something. You must develop it in such a way that you can hand it over."

She hesitates. "With this unit, I eventually got to a point where I realised that I wasn't needed anymore.

"You start with something, you make it permanent, and then you move on. I also realised that it's unfair to only focus on the burnt child. You must also involve the other children."

As Albertyn started looking at the hospital's other units, she more frequently came into contact with the HI-virus. An urgent question suddenly reared its head: how painful is it to have Aids?

Once again, she was in unknown territory.

"I started searching on the internet and found 9000 articles on the treatment of HIV/Aids in children, but only four of them focused on pain management."

She looks at her computer in dismay. "None of the four articles looked at pain management in Aids infants. This is due to the fact that, in developed countries, children aren't really born HIV-positive anymore. I started to think that we should look at how these babies experience pain, as they simply don't have a voice."

She was shocked to find that these babies give no indication of experiencing pain.

The reason? "They are too sick to cry or move, and their energy is so low that they simply can't talk."

She frowns. "There is no doubt that HIV is painful. Children are constantly plagued by opportunistic infections such as gastro-enteritis, pneumonia and meningitis.

"Due to the fact that the children can't cry, their pain is invisible."

Documenting the whole picture
Once again, she started working on a pain scale.

This time she relied mainly on the body language of her young patients.

This language consists of simple clues for signs of pain and tension, such as whether the ankles are crossed, the breathing is shallow, and whether the fists are clenched.

At the same time, Albertyn started measuring the development of the pain and discomfort on another scale. This scale consists of a series of indicators that document the overall picture, such as sleep patterns, eating patterns, skin rashes and weight.

Her dark eyes are bright. "At first I was almost too shy to say that I had new scales. I used to simply refer to my way of examining a child for pain as 'that thing that I do'.

"In February last year, a pain researcher from the Erasmus University in Rotterdam visited me, and I coincidentally showed it to her. She helped me to put the scales on paper.

She smiles proudly. "Wherever I go in the world, people are dumbstruck by its effectiveness. It's now almost a cult. Almost like the Macarena.

"These scales are the first of their kind in the world, and are now also being used by organisations such as USAID and the World Health Organisation."

Recognition for her work
The awards kept on streaming in: First the national award by Elle and Elizabeth Arden for her work among children who survived burn wounds, and now her finalist status in the Woman of the Year Competition.

She looks almost shyly at me. "To be a finalist in the Woman of the Year Competition is a great responsibility, because it is about the child who now, for the first time, has a voice through my efforts.

"I can now stand up for this child and say: 'Look at me' in a world that has never known his pain. I am almost too serious about this to get excited."

Something she is just as serious about is the internship that the American president's daughter, Barbara Bush, did with her last year. She regarded it as a "state secret".

The 24-year-old worked for nine months in Albertyn's office, after the latter was invited in 2004 to address representatives of the White House regarding paediatric palliative care in Africa.

Her eyes are big. "There was considerable security around the child, and the White House didn't want the world to know that she was here. I wanted to protect her privacy with my life. It was the first time that an American president's child worked in a third-world country, and I regarded it as an awesome responsibility."

Despite her status, she says, Barbara worked as a normal volunteer in the hospital. "She was just a regular student. She wasn't self-righteous at all and she meant a lot to the children.

"She's still just a child herself. What happens in politics isn't her responsibility."

A great responsibility
Albertyn, however, is someone who staggers under her own responsibilities – particularly since she is the only pain researcher on the continent who has mastered the language of pain among children.

It is for this reason that she wants to distribute her knowledge as widely as possible.

"I give lectures across the world, and I try to help people as far as possible with pain protocols. We also want to write a manual about the management of paediatric pain that we want to distribute right across Africa."

She talks faster. "There is so much pain and suffering, and there just isn't time to waste. I must run with this thing now. The longer I wait, the more children will suffer."

'It really affects one'
And then her words suddenly dry up. One thing that her scales aren't able to reverse is the finality of death – even though these scales can measure the pain of dying.

She becomes quiet for a moment. "I realised that it won't help to only have these scales. Many of these children die alone – particularly the Aids infants, because it's often just too much for the parents to witness."

She looks out of her office window as dusk sets in. "I sit with such a child twice or three times a week, and it really affects one.

"It's easier to see an adult die. Life is over for such a child even before it has begun."

But, just as with her own father's death that she describes as "one of the most beautiful things I've ever seen", she tries to remain positive.

"How you talk to yourself is very important, because you become your own best friend. It is also important to remember that people aren't afraid of dying. They fear the pain. That's how I console myself.

"Sometimes I climb in the cot with the child, hug him, or massage his feet and body. Particularly the babies fight very hard against death.

"I am often almost proud, thankful that I was the one that could have been there.

"Time after time I am humbled when I look into the eyes of a dying child, because you know there's something more. It's almost an acceptance in the child's eyes before he goes."

Links:
Arthritis Foundation of South Africa
Multiple Sclerosis South Africa
The South African Society of Physiotherapy

- (Willemien Brümmer, Die Burger, July 2006)