Massive improvements in the care and treatment of pregnant women with HIV have enabled us to reclaim our reproductive rights, writes Natasha Bell
stop press - Natasha's baby boy was born on 13 Dec 2004 at 10.55 pm, weighing in at 6lb 7 ozs
Why bare my breasts, cellulite and gargantuan gut on the
cover of PN? Surely a 35 year old pregnant woman living with HIV should be
shrouded in a burka, hide from the world and wallow in shame and fear? Sod
that, I say. It’s time for us to stand up and reclaim our reproductive
rights. And if that means getting our tits out every now and then, so be it.
Viral load is key
There’s been a paradigm shift in the treatment of pregnant women living
with HIV in the UK over the last few years. As Elizabeth Crafer, director
of Positively Women, puts it: “Things have changed since the guilt and
blame days of the 1980s when women were told HIV meant they couldn’t,
or shouldn’t, have children, and abortions were offered before the urine
hit the pregnancy test kit. Information, HIV treatments and foot-stamping
at the denial of reproductive rights have resulted in PW’s crèche
being full to the brim.”
Without treatment, about one in four babies born to women living with HIV
will be HIV positive. But now, risk of transmission can be reduced to less
than 1 per cent if the mother has access to treatment. This dramatic reduction
occurs because the drugs reduce the woman’s viral load, so their baby
is exposed to less of the virus, during childbirth and in the womb.
C-section versus natural delivery
There is still much confusion in the UK about the treatment a pregnant woman
with HIV should be offered and the best mode of delivery. I was appalled to
hear recently that a pregnant woman was encouraged to have an abortion by
her GP because of her HIV status. British HIV Association pregnancy guidelines
are now more than three years old and are beginning to look out of date. Some
hospitals are therefore choosing to use their own data to make decisions about
the best treatment and care of pregnant women with HIV.
As a patient at Chelsea and Westminster Hospital in London, I have received
considerable support in making my own decisions about my treatment and care.
At first I believed it would be necessary to switch from my existing combination
of Combivir and efavirenz because of an animal study that indicated efavirenz
could lead to birth defects. But numerous women on efavirenz have subsequently
given birth to healthy babies so I have decided to stick with my effective
and tolerable medication.
Contention also exists around the best way to deliver the baby. Studies conducted
before the advent of combination therapy indicated that Caesarean sections
could reduce the risk of mother-to-child transmission. In many UK hospitals,
pregnant women with HIV are still encouraged to have C-sections, regardless
of their viral load. But if a woman has an undetectable viral load, there
doesn’t seem to be any additional protective effect in having a C-section.
US guidelines don’t universally recommend planned C-sections for a woman
on combination therapy with an undetectable viral load. Despite the allure
of imitating Victoria Beckham, reputedly “too posh to push”, I’m
currently planning to opt for a natural delivery.
When breast is not best
Babies born to women living with HIV are usually given AZT for four to six
weeks following the birth, to reduce the risk of transmission even further.
It’s strongly recommended that the mother bottle feeds the baby, as
the risk of transmitting HIV via breast milk can be as high as 28 per cent.
Some women worry they will be asked awkward questions about why they’re
not breastfeeding. I think it’s important women discuss their concerns
with their medical team who can help come up with possible explanations, without
you having to disclose your HIV status.
It’s sobering to realise how different the situation is in the developing
world. We are lucky to have access to treatment that can dramatically reduce
the risk of transmitting HIV to our babies. This is not the case in many parts
of the world. Dr John Wright, registrar at the Nkosi Johnson Unit at Charing
Cross Hospital, emphasises this point. “In the UK, HIV negative babies
are delivered by multi-disciplined teams in HIV specialised obstetric units,
with access to HAART. However in rural Africa HIV positive mothers are lucky
if they have one tablet of nevirapine at the onset of labour.”
So far, my pregnancy has proved to be a very rewarding and positive experience.
Despite the very occasional twinge of anxiety regarding my baby’s health,
I’m ebullient with anticipation. I am as thrilled with this pregnancy
as I was with my two previous pregnancies prior to HIV. Living with HIV should
not be a barrier to women choosing to have children - we have the fundamental
human right to make our own decisions.
Mary’s story: diagnosed in 1991
I became pregnant in 2000, but was initially unaware. I told my doctor “I
think I’ve started my menopause”. When the pregnancy test came
back positive, I was shocked because I had been using condoms.
I had lots of concerns. I had to make decisions based on my age, my HIV status
and my older children, as well as my partner as I hadn’t disclosed to
him. I had so many dilemmas - what if I die, my baby dies or is born HIV positive?
I feared people would say: “Why are you getting pregnant when you are
HIV positive?” I had a very supportive consultant and midwife counsellor.
They gave me lots of information, including on a termination. I had two weeks
to think about it. I thought about the effect a termination would have on
me mentally. I decided it wasn’t for me and went with the pregnancy.
After making the decision we went through the options. At that time it was
mono-therapy or two drugs. I decided to go for AZT monotherapy, then intravenous
AZT during delivery. After delivery I stopped taking the medication. I had
a Caesarean which I planned with my consultant. I didn’t really know
what to expect.
My baby was given AZT and septrim for 4-6 weeks. He tested negative soon after
birth and was given tests up to 18 months. He then got the all clear. I bottle
fed him, which was easy for me because I lived in the UK. But I can understand
that it can be difficult for women in other countries and for those who aren’t
working.
I was working at a women’s HIV charity at the time and didn’t
really face any discrimination. But I heard other women tell terrible stories
about being stigmatised by nurses. I think women living with HIV now have
the opportunity to have children regardless of their age or HIV status. I
think it’s important to get the right information, make an informed
choice and ultimately do what you want to do.
Ange’s story: diagnosed in 1993
I had my baby in 1998 at St Mary’s hospital London. I wasn’t on
treatment, so I started at around week 28 of my pregnancy. I felt pretty much
okay about my pregnancy; my main concern was my baby.
I was very well supported. My employers, Positively Women were great. Other
HIV support organisations, Body and Soul and Centrepeace, also gave me a lot
of support. My mom was a rock. My midwife and consultant were great. My friends
insisted on throwing me a baby shower a week before I was due. I really have
nothing negative to say about the way I was treated all round.
I had a Caesarean section at 38 weeks and intravenous AZT during delivery.
My baby took AZT for about six weeks. I did not breastfeed, which worked out
quite well especially as I went back to work when baby was four months old.
Luckily her test was negative, but in those days we had to wait until they
were 18 months to know for sure. It was quite a nerve-racking time.
It’s important to have as much information regarding HIV and pregnancy
as possible if you are considering having a baby and to work with health professionals
involved in your care. It is also important to meet other women who have been
through the process.
It’s even more important for women to realise they have a choice about
whether to have a C-section or normal delivery, particularly if they have
an undetectable viral load. People are individuals and what works for one,
might not necessarily work for another. Positive women and families should
feel comfortable about whatever decisions they make - be it to have or not
to have children - just because a woman tests HIV positive, it does not mean
they stop having feelings.
• Both names have been changed
