Don’t forget SP: testing untested children

‘SP’ (not his real initials) was a ten-year-old boy who died of AIDS in a north London hospital in 2008. He was finally tested for HIV, and found to be positive, the day before he died.

Yet his parents had been diagnosed at the same hospital six years earlier, and his mother had been advised to get her son tested then. She declined at the time, saying finding out about her own status was enough of a burden to deal with. Besides, the boy was a happy, healthy four-year-old – so unlike the pictures she’d seen of dying babies.

Over the next six years SP’s health deteriorated, but no consultants he saw ever made the link with HIV and his mum didn’t volunteer her status until it was too late. If he’d been diagnosed six years, two years, even six months earlier, he would probably have lived.

This tragic case gave rise to a one-day conference in December 2008 called Don’t Forget the Children, and a subsequent guidance document¹ with the same title, co-written by BHIVA, CHIVA and BASHH (the British Association for Sexual Health and HIV), suggesting systems to ensure such a case never happened again.

Studies, including one co-written by workers at St George’s Hospital, found that, when asked why they did not get their child tested, the most common reason cited by mothers is that they thought it unlikely their child could have HIV.²

In many cases they will be right, although as Katia Prime, one of the authors of the study points out, mothers often say their child has been tested but have no proof, frequently because the test was done abroad.

Mothers diagnosed after the birth of a child often assume their child is negative because they confuse the date of diagnosis with a date of infection. There is a need to help them understand they can have had HIV for many years and so their child may have the virus as well.

The other reason they think it is unlikely that their child has HIV is that the child is well. However it is becoming increasingly apparent that, while one group of children gets very sick with HIV from the start, another group may survive well into adolescence with no symptoms.

Dr Prime had earlier co-authored a study³ that found 542 UK cases, up to the year 2007, of children born with HIV who had not been diagnosed until the age of 13 (the oldest was 20). Most had spent their earliest years in Africa, and the median age of arrival in the UK was 12; but 30% were diagnosed more than five years after they arrived in the UK and 14% had been born here.

Half of the young people were asymptomatic, but half had a CD4 count under 200 cells/mm³ and 20% had AIDS symptoms. Some had undoubtedly narrowly escaped the fate of young SP.

Since then, clinics have been urgently revising their protocols and doing ‘look-back’ exercises to check whether any woman, and in many clinics any man too, who tests positive for HIV and mentions they have a child has had any children tested.

St George’s, in conjunction with two other south-west London clinics, has recently undertaken such a study.⁴ The researchers found, through prospective interviews and looking through notes, that 30% (254) of the 846 children of patients living in the UK were untested, and that of these nearly a quarter (56 children) were under 18.

As well as not believing their child could have HIV, the other main motivation for mothers not to have had their child tested was that, with older children, it inevitably would involve disclosure of their own status.

“Mothers feel huge guilt about infecting their child,” says Katia Prime, “and the older your child is, the more difficult it is both to have your own status revealed and to face the possibility your child will learn you infected them.”

At St Mary’s, Christina Newbould explains, they have instituted a much more proactive testing procedure, as have St George’s and many other clinics. Any child of a person diagnosed at the HIV clinic, or any sibling of a child diagnosed in paediatrics, is followed up to ensure they get tested too (at St Mary’s, children of diagnosed fathers as well as mothers).

From August 2008 to February 2010 there were 39 children referred for testing at St Mary’s, of whom two – a 12-year-old and a 15-year-old – turned out to have HIV. All children 12 and over were informed they were having an HIV test, as well as two eleven-year-olds.⁵

Included in the protocols are criteria for deciding when parental refusal to have a child tested becomes a child protection issue: at St Mary’s, two cases involved social service referrals. When threatened with procedures, parents in both cases agreed to have the children tested.

“If your kid is 17 and you’ve had HIV for 20 years and never disclosed to them…and you are probably right that they don’t have HIV…then testing is a really big issue,” says Christina Newbould.

“With younger children, we tell mums that the sooner they do it, the less they’ll have to explain. With older teenagers, we explain that we don’t have to disclose the mum’s status: we can say ‘Well, since you’ve come over from Africa or are within that community you are more likely to have certain conditions, which could be asymptomatic, such as malaria, TB and HIV: so we’re just going to check for them’. No young person has ever refused such a test request.”

She cites two cases in which testing brought families closer together. In one, a 16-year-old girl died of an AIDS-related condition at St Mary’s and it was realised her 14-year-old sister was untested. The mother consented to HIV testing but adamantly refused that the girl be told it was for HIV.

In the end, with social service intervention, the girl was told the test was for HIV with her mother’s consent. She was negative.

In the other case, an eleven-year-old boy had seen his father die of AIDS in Africa and had then come to the UK. Again, the mother did not want her boy to know what he was being tested for.

“However, he was obviously scared his mum had HIV,” said Christina: “He kept on asking leading questions: ‘Mum, are you all right?’ and so on.”

In the end she agreed, and we tested him. He was negative too.

“The mum later said ‘Our bond is so much stronger now’,” says Christina. “He just needed the reassurance that, although his mum had HIV, she was fine.”