Doctors who work with kids born to HIV positive
mums in the UK bring glad tidings, writes Susan Cole
Photos Piers Allardyce
Good
news can be thin on the ground in HIV. But here in the UK, at least, new figures
seen by PN suggest HIV positive kids face a much brighter future.
Thanks to antiretroviral therapy (HAART), kids with HIV are living longer
and their health is improving; so much so the vast majority are reaching adulthood
and beyond.
Early reports also suggest there are no major concerns about the health of
HIV negative kids exposed to their mothers’ antiretrovirals in the womb.
A brighter outlook
“When I found out my daughter was HIV positive, I thought she would
die within a year,” said Kitty, whose eight-year-old was diagnosed with
HIV six years ago.
“But because she’s been so well I don’t think about her
dying anymore. I’m more worried about the stigma she may face.”
Historically, the prognosis was poor for children born with HIV. Before combination
therapy was made available for kids, some 50 per cent died or developed an
Aids diagnosis before their tenth birthday. Up to 20 per cent developed Aids
within the first year of their life. But today the outlook is much better.
More women living with HIV are having babies, yet deaths among children born
with HIV are rare. And the number of kids born with HIV has fallen significantly.
Huge fall in child deaths
These encouraging trends are outlined in a report from the London HIV pre-natal
and paediatric HIV services sub group. Their optimism is based on data from
the Collaborative HIV Paediatric Study (CHiPS) which is following more than
800 kids in UK and Ireland. One notable finding was that the average age of
these children had gone up over time. The number of HIV-infected children
under the age one has declined massively while the percentage aged over 10
rose, from less than 10 per cent in 1996 to 40 per cent in 2004.
These figures reflect the fact that far fewer babies are born with HIV in
the UK. This dramatic decline has come about because of the use of antiretrovirals
in HIV positive women during pregnancy and increased HIV testing in pregnancy.
Combination therapy has led to a 90 per cent reduction in deaths in children
living with HIV. Around 75 per cent of the kids in the CHiPS study are on
HAART.
More poz women having kids
In London there were more than 2,400 pregnancies in women living with HIV
between 2001 and 2005, according to recent data from the National Study of
HIV in Pregnancy and Childhood (NSHPC). There were 500 births in 2004/5 compared
with 330 births in 2001. Eighty-five per cent of women now take combination
therapy and mother-to-child transmission rates are now less than two per cent
in the UK. More women than ever know their diagnosis before pregnancy, up
from 40 per cent in 2001 to 53 per cent in 2005.
Most of the positive women having babies used to live in London but now, because
of the dispersal of asylum seekers, half have their babies outside the capitol.
But experts remain concerned about the small number being born with HIV to
mothers who are aware of their status.
From tots to teens
About one per cent of babies born to women diagnosed in London since 2001
are known to be infected and there are currently 500 children receiving care
in London. Around 15 per cent were aged five or under; 45 per cent six to
ten and 40 per cent 11-15 years. The number of adolescents living with HIV
is likely to increase soon and with this will come new challenges.
Dr Mike Sharland, consultant paediatrician at St George’s Hospital,
commented: “The number of children with HIV under care in the UK is
increasing. However, overall it’s very encouraging that there are now
virtually no deaths. the overwhelming need now is to develop transitional
care to ensure teenagers with HIV integrate fully into adult care.”
HAART exposure
Later this year a study will report on some 700 uninfected children exposed
to antiretrovirals in the UK. The CHART study will give us a better idea of
what happens to these kids as they get older. Initial findings suggest no
major concerns about their health, but with more than 1,000 infants exposed
to HIV drugs born in England each year, further monitoring is needed to get
a better picture.
Reclaiming rights
While latest findings from all three studies suggest a better future for kids
affected or infected with HIV, some worries remain, not least the very small
number of children still infected even when their mothers know their status.
An audit is currently underway to see why this is happening.
With the average age of children living with HIV rising, experts still worry
kids exposed to HAART over a long period will develop drug resistance and
potential toxicities. But overall the news is good and the outlook promising.
These studies show how far we have come in preventing mother-to-child transmission
and treating children living with HIV. And it is heartening to see how more
women living with HIV are reclaiming their right to have and raise a child.
“Her
health is fine; she has no side effects to the medication”
Kitty, 33, didn’t know she was HIV positive until two years
after her daughter was born, only finding out when she donated blood
“I convinced myself she must be negative as she’d never been ill.
I felt terrible when her test came back positive. Her viral load and CD4 counts
were okay. It took another four years until she needed to start treatment.
She kept getting ear infections and flu so he went on Sustiva and some other
drugs - I don’t remember their names - and she is still on this combination.
She takes two pills in the morning and four-and-a-half in the evening.
She was initially given her medication in liquid form, but she completely
refused to take it. Although she was very young, we tried her with pills and
she was fine. She’s very good about taking her pills on time and her
health is fine; she has no side effects to the medication, but still gets
colds.
She knows she’s not well and so has to take medicine. She also knows
her illness is in her blood. She’s been asking how and why recently
and I’ve said I’ll tell her everything when she’s nine.
The hospital said she may realise more than she’s letting on. They explained
to her she had bacteria in her blood and needed medicine to keep well. They
also told her they needed to keep taking blood to make sure the treatment
was still working. It was difficult for her to give blood, but she seemed
to have more of a problem with the anaesthetic cream. Now they don’t
insist on the cream she’s much better.
I think she’s putting the pieces together. I think she’s going
to be a journalist; she’s always asking questions and writing. I have
many anxieties but refuse to think about it. I suppose that’s my way
of coping. At first I thought she would die within a year and I’d die
too. Because she’s been so well I don’t think about her dying
anymore. I’m more worried about the stigma she may face, particularly
in her teenage years. I hope I can help her to develop the life skills to
cope with the problems that may come her way.”
“His development so far has been excellent. He is very bright and active”
Natasha, 37, has a 22 month old son who is HIV negative.
I had been living with HIV for about six years when I became pregnant. I knew
the risk of transmitting HIV to my baby was extremely low, but had anxieties
about potential side effects of my medication, particularly as I was on efavirenz.
I found it difficult to decide whether to have a normal delivery or C-section.
However, five weeks before my baby was due, my viral load began to rise due
to resistance to two of the drugs in my combination, so I opted for a C-section.
In the end I went into labour four weeks before my due date and had an emergency
C-section. My baby was born weighing 6.5lbs and appeared in good health.
He was given AZT for about four weeks to further reduce the risk of transmission.
This made him quite anaemic but once he stopped taking it things went back
to normal.
The first three HIV tests, which look for presence of virus in his blood,
came back negative. I had breastfed my older children very successfully, so
it was initially a little disappointing not being able to breastfeed my baby.
However, I quickly adapted to bottle feeding. He had another HIV test at 18
months, to see whether he had antibodies to HIV (younger babies retain their
mothers’ HIV antibodies, which are usually cleared by 18 months). I
regarded this test as routine and it didn’t really cross my mind that
it could come back as positive. When it did, despite knowing this test meant
he had antibodies to HIV, and he wasn’t necessarily HIV positive, I
was very anxious. My hospital was very supportive and he was re-tested a couple
of months later. This time the results come back negative.
I have anxieties about the potential danger of exposure to HIV medication
for my baby, but his development so far has been excellent. He is a bright
and active toddler with boundless energy. I don’t believe living with
HIV should be a barrier to women having children.”
* All the names have been changes and all images posed by models.
It’s a dramatically different picture these days, writes leading paediatric
HIV consultant Dr Hermione Lyall
In
the early nineties we frequently looked after many children with opportunistic
infections. They often had developmental problems, low energy levels, poor
appetites and growth. They were often unable to attend school or take part
in other normal activities. Often, other family members were also sick and
death in the family was commonplace.
Now most children at our clinic are rarely, if ever, admitted to hospital
with any kind of illness. They have active lives and rarely miss significant
amounts of schooling. They are growing, thriving and, in the main, making
good progress. Teenagers used to be a rarity but now the opposite is true,
and thankfully we are seeing very few newly infected babies.
It is exciting to help young people with HIV develop, gain independence and
learn to manage their own disease.
Today when I meet a new child with HIV they are normally from a family recently
arrived from an African country where the drugs are often unavailable. It
is a privilege to be able to offer them a future like other young people,
and even the possibility of children of their own.
There are still problems: HIV stigma puts an enormous burden on young people.
If you have HIV, you just don’t know what kind of reception you are
going to get if you tell your peers. Psychological stress and mental health
issues are turning out to be a major consideration.
Then there are the unknown potential long-term effects of decades of antiretroviral
exposure. As yet we don’t even know what these effects might be, but
we are looking at lipids and the cardiovascular system, cell changes, possible
organ toxicity such as in the brain, liver, kidneys, bone etc. Where appropriate
HIV should be treated, but we have to monitor children closely to ensure the
treatments are not causing them any significant long-term damage.
CHIVA promotes the best management of children with HIV in the UK including
psychological development, educational attainment and family life. It develops
guidelines for treating children and preventing mother-to-child transmission.
In 2007 we will add a website for families and children to increase input
from young people themselves. Let us know what you think.
“He brings me joy and is very good company”
Laura, 34, has been HIV positive for 10 years and has a six year
old son who is HIV negative.
“I knew I was HIV positive before I became pregnant and my pregnancy
was planned. I was already on Combivir and nevirapine before I was pregnant
and I stayed on this. But I was worried my baby would be deformed from being
exposed to my medication so, during the first three months of my pregnancy,
I would stop taking treatment for a week and then go back on it, on and off.
“I didn’t tell my doctors. Ten weeks before my baby was due I
developed pre-eclampsia, which I think was related to my meds and had an emergency
C-section. Because my baby was 10 weeks early, only 2lbs, like a bag of sugar.
He was in intensive care for five weeks and developed toxicity to the medication.
“Six years later, his development isn’t very good and he has a
learning difficulty. He started speaking when he was five and has special
help at school. I don’t think this is due to exposure to HIV medication
in the womb, but because he was so premature. Apart from that, his health
is fine and his physical appearance is perfectly normal. The future is uncertain;
I don’t know whether he’s going to outgrow his problems. I am
very happy to have a child, because I had lost hope of ever having a child
of my own after my diagnosis. He brings me a lot of joy and is very good company.”
• Dr Hermione Lyall is chair of the Children’s HIV Association
(CHIVA) and a consultant in paediatric infectious deiseases at St Mary’s
Hospital, London
• www.bhiva.uk.org/chiva
