Having HIV and a healthy baby
Thanks to medical advances and community support, future mothers have every reason to be hopeful
Julie is expecting her first baby. With less than a month to go before becoming a mother, the resident of a Montreal suburb is concerned with the usual things: baby names, comfortable sleeping positions and nursery colours. Julie is HIV- positive, and she and her husband are proof that the virus doesn’t have to end the dream of parenthood.
“I am not worried about my baby becoming infected,” she says over the phone, the smile evident in her voice. “I am just excited.”
Ste- Justine Hospital helped Julie safely plan her conception and pregnancy with her husband, who does not have the virus. It is the only centre in the Montreal region to offer such services to HIV- positive women.
“( The team at the centre) makes me feel secure with my baby and myself,” she said.
Thanks to medical advances, the current risk of mother- to- child HIV transmission ( known as vertical transmission) is less than one per cent in Canada.
Before the introduction of two antiretroviral drugs ( AZT in 1994 and HAART in 1996), the vertical transmission rate was greater than 25 per cent in Canada. Treatment with at least two antiretroviral drugs ( known as combined antiretroviral therapy, or cART) is seen as especially effective.
Caesarean sections — which avoid the exchange of fluids that occurs as the infant passes through the birth canal — also reduce the risk of transmission in some circumstances, as does refraining from breastfeeding.
In 2012, the latest year for which statistics are available, 225 infants in Canada were exposed to HIV at birth and no vertical transmission has been reported.
And given that the life expectancy for people living with HIV is approaching near- normal in the world’s richer countries, individuals and couples living with HIV in Canada have every reason to be optimistic about becoming parents.
Despite these encouraging statistics, a stigma continues to surround pregnancy and HIV/ AIDS, as evidenced by the fact that Julie agreed to be interviewed for this article only on condition that her real name not be used.
That’s where community organizations like the Centre D’Action SIDA Montreal-Femmes come in to offer support. It is one of only two community organizations in Canada that specifically helps HIV- positive women and women affected by HIV ( the other is in Vancouver).
Marie Niyongere, in charge of support and social services at Centre D’Action SIDA, happily reports that four HIV- positive women who frequent the centre gave birth last year, and four more are expecting.
Located in the Ville- Marie borough, the centre provides bilingual education, support, counselling and referrals, as well as volunteer services that provide in- home visits and daycare to HIV- positive women and their families.
It collects non- perishable food, baby formula, clothing, toys, books, hygiene products and small household items.
It also provides a safe place where HIV- positive women can share their experiences during a weekly lunch and workshop on topics such as disclosure, pregnancy, discrimination, or family dynamics.
Growing awareness
Since its beginnings nearly 25 years ago, the centre has helped more than 5,000 people. When asked if this number is expected to increase, Niyongere replies: “Unfortunately, yes, we have seen an increased demand from HIV- positive women who need support. We get calls from all over the province. … Combined with the centre’s dire financial situation, it is an enormous challenge.”
The increased demand for support may be because the proportion of women who represent new HIV infections in Canada has risen in the last decade. Centre D’Action SIDA, which survives on donations and grants from the federal and provincial governments, has had to put some programs — including housing, computer education programs and additional daycare services — on hold because of financial constraints.
Niyongere remembers attending a centre workshop on HIV and pregnancy planning in Montreal in 2011. She recounts the story of one sero-positive woman in the audience whose marriage was failing because she and her husband assumed they could not have HIV- negative children.
After attending the workshop, the woman became pregnant and has given birth to a healthy baby girl.
That workshop on HIV and pregnancy planning was given by former Montrealer Dr. Mona Loutfy, director of the Women and HIV Research program at the Women’s College Research
They have faced a lot of discrimination and stigma from other people telling them, ‘ Oh, you are HIV- positive. You shouldn’t get pregnant.’
DR. MONA LOUTFY DIRECTOR OF THE WOMEN AND HIV RESEARCH PROGRAM AT THE WOMEN’S COLLEGE RESEARCH INSTITUTE IN TORONTO
Institute in Toronto, and principal author of the Canadian HIV Pregnancy Planning Guidelines.
Loutfy created the guidelines with several goals in mind: to reduce the risk of mother- tochild or partner- to- partner ( horizontal) transmission, improve health outcomes for HIV- positive mothers and their children, reduce the stigma associated with HIV and pregnancy, and improve access to pregnancy planning and fertility treatment for HIV- positive individuals or couples wishing to become parents.
The guidelines are endorsed by the Society of Obstetricians and Gynaecologists of Canada, the Canadian Fertility and Andrology Society and the Canadian HIV/ AIDS Trials Network.
Loutfy reports that vertical transmission rates in the Toronto area are now as low as 0.1 per cent, and that there is a growing awareness among HIV- positive would- be parents who were previously discouraged or misinformed.
“They have faced a lot of discrimination and stigma from other people telling them, ‘ Oh, you are HIV- positive. You shouldn’t get pregnant,’” she said.
Multidisciplinary team
Before pregnancy can be safely considered, an HIV positive patient has to be on cART and their viral load must be suppressed ( meaning the amount of the virus in the blood is undetectable).
Apart from these two criteria, however, pre- conception health guidelines are similar to those of any woman wishing to become pregnant, such as a healthy diet and lifestyle.
The Canadian HIV Pregnancy Planning Guidelines provide HIV- specific recommendations for nearly every parental scenario: heterosexual couples in which either the woman or man is HIV- positive, same- sex couples ( men or women) in which one partner is HIV- positive, single men or women who are HIV- positive, and samesex or heterosexual couples in which both parents- to- be are HIV- positive.
As with HIV- negative individuals or couples, the expertise of a fertility specialist is sometimes needed. Unfortunately, HIV- positive individuals and couples have limited access to this type of specialized care. About 85 per cent of fertility clinics in Canada accept HIV positive individuals or couples for consultation, but not all offer risk- reduction strategies or fertility treatment.
In the Montreal region, access has improved considerably in the last few years. The University of Montreal is mandated by the Quebec government to treat patients who require fertility assistance and are at risk of viral transmission. Its clinic has a multidisciplinary team and a specialized laboratory to provide services to individuals or couples living with HIV, hepatitis B or hepatitis C.
And if an HIV- positive woman is planning pregnancy or becomes pregnant, she is referred by her HIV specialist to the Ste- Justine hospital, where she and her baby will be followed during pregnancy and after birth by a social worker and a team of medical specialists.
Loutfy and her colleagues have promoted this multidisciplinary approach to treating HIV- positive women in Canada for several years. In Toronto, for instance, an expectant HIV- positive mother is seen by an HIV specialist, an obstetrician, a midwife and pediatric HIV specialist. In addition, baby formula is provided by the Ontario government via a communitybased charity organization called the Teresa Group.
For women in B. C., the Oak Tree Clinic in the B. C. Women’s Hospital and Health Centre in conjunction with the BC Centre for Excellence in HIV/ AIDS has developed clinical guidelines for the treatment of HIVpositive women during labour and delivery.
Logan Kennedy, Loutfy’s research associate and former labour and delivery nurse, stresses the importance of better understanding the social complexity that is coupled with HIV infection, and the lingering stigma and fear of transmission. He said it is also important to improve care for HIV- positive mothers who have just given birth.
“For a clinician who understands the realities of living with HIV, the manageability and the low risk of the baby becoming infected, it is about just trying to support them. To have those moments where what just happened is not about being HIV- positive, it is about having a new baby … and trying to help ( new mothers) live in that moment.”
Surveillance reports on HIV infection from the Public Health Agency of Canada indicate that communitybased organizations like Centre D’Action SIDA will not get reprieve any time soon, as the proportion of HIV infections attributed to women has risen in the last decade.
Since 2008, women represent 17 per cent of people living with HIV and 26 per cent of all new HIV infections in Canada. Given that the increasing rate of HIV infection is primarily in women of child- bearing age, national efforts such as the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study that address this alarming trend and the specific needs of women living with HIV in an accessible and inclusive and supportive manner are underway.
A renewed interest in vertical HIV transmission and a cure for HIV infection was recently sparked when two HIV- infected babies born to HIV- positive mothers made worldwide headlines because of their now HIVfree status.
Some reports have even gone so far as to say that aggressive treatment can “cure” babies who have contracted the virus from their mothers. At a conference on HIV/ AIDS research in St. John’s, N. L. last weekend, however, such claims were called premature.
One study noted a resurgence of the virus in a Canadian HIVpositive child whose medication was stopped temporarily.
Growing acceptance
In Quebec, an HIV test is part of routine prenatal screening. This is what is considered an opt- out system, where the onus is on the women to refuse the test. However, women may be unaware that they are being tested for HIV, or that they have a right to refuse this test. Opt- in provinces such as Ontario and B. C. require patient consent before an HIV test is requested as part of prenatal screening.
Proponents of the opt- in system argue that asking women to consent to such a test helps them mentally prepare for a positive result; however, proponents of the opt- out system point out that this approach reaches more pregnant women.
Either way, the debate indicates that open dialogue between women and their physicians is still lacking when it comes to HIV and other sexually transmitted infections, as well as sexual and reproductive health. Importantly, women living with HIV who express a desire to become pregnant should be provided with counsel on available options in order to make informed decisions.
As our view of HIV/ AIDS evolves into a growing acceptance that HIV infection is a chronic yet manageable condition, so must the medical care that is provided for affected individuals and their families. For now, our best weapons remain education and prevention, as well as accessible medical, social, and communitybased support systems in place for vulnerable groups, including women and children.