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Special
Positive Parenting Section
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Positive Women Speak Out
About HIV and Pregnancy
by Cathleen E. Williams,
RN, Esq.
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Originally published in the Spring/Summer
2003 issue of Juice, the newsletter of S.M.A.R.T. (Sisterhood
Mobilized for AIDS/HIV Research & Treatment)
A couple of Saturdays ago
I had the opportunity to lead a roundtable discussion about
HIV and pregnancy with women from S.M.A.R.T. University, Inc.
The discussion lasted only an hour, but the issues covered
during that hour spanned generations. As a trainer in HIV/AIDS,
I have conducted numerous trainings on HIV and pregnancy,
but never have I been as inspired as I was that Saturday morning.
As anyone who follows HIV/AIDS
or issues facing HIV positive women knows, HIV can be transferred
to the unborn child of an HIV positive mother during pregnancy,
labor or childbirth. The rate of mother-to-child transmission
of HIV is approximately 25% without treatment. AIDS Clinical
Trial Group (ACTG) 076, taught us that administering zidovudine
(AZT) to the mother during pregnancy, labor and delivery,
and administering it to the child for the first six weeks
of life, reduced the risk of perinatal transmission to 8%
or lower. ACTG 076 resulted in significant changes in the
management of pregnant women and newborns, particularly in
New York where state law mandated testing all newborns for
HIV. As recently as a few weeks ago, federal officials
proposed testing all pregnant women for HIV as a routine part
of obstetric care. Without minimizing the importance of
the reduction of perinatal transmission, and acknowledging
it as a critical step in the prevention of HIV, our discussion
extended beyond a mother passing the virus to her child to
examine the numerous psychological and physical aspects of
HIV in pregnancy.
An HIV positive woman in
the United States is very likely to be in her childbearing
years. According to the HIV/AIDS Surveillance Report,
(December 2001), 115,324 women or 80% of all women infected
in the United States are between the ages of 13 and 44. The
reduction in perinatal transmission is very exciting. Excitement
alone, however, is not enough to support an HIV positive woman’s
decision to have children. She needs the support of family
and friends, a broad knowledge of HIV/AIDS, and the cooperative
care of a knowledgeable, HIV savvy obstetrician-gynecologist
(OB-GYN).
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The women in our discussion
recalled the days when physicians recommended abortion as
the best option for an HIV positive pregnant woman. Twenty-plus
years into the epidemic, not all obstetricians are equipped
to provide quality care to HIV positive women. As a result,
women must be prepared to seek out a physician who:
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- is committed to the care of
HIV positive pregnant women,
- is trained in high-risk HIV obstetric
care, and
- believes in encouraging patients
to participate in their own care.
Women must have a working
knowledge of HIV and be willing to participate in their own
care. This is very important for a woman managing HIV and
pregnancy. For example, something as common in pregnancy as
morning sickness, or loss of appetite can be severely complicated
by HIV. Understanding adherence to Highly Active Antiretroviral
Therapy (HAART), drug resistance and other problems is necessary
to minimize the possibility of drug resistance in the mother,
in the newborn if infected, or both.
HIV/hepatitis C co-infection
in pregnancy was of particular interest to our group. The
risk of transmission of hepatitis C to an infant increases
if the mother is HIV positive. In a woman with HIV/hepatitis
C co-infection, liver function tests should be followed on
a regular basis. Interferon therapy, the treatment for hepatitis
C should be discontinued during pregnancy because the affect
on the fetus is unknown, and interferon and Ribavarin combination
therapy has been associated with birth defects and, therefore,
should not be used during pregnancy or breastfeeding.
Other topics of concern were
domestic violence, bloodless C-sections (an elective C-section
during which the mother’s blood vessels are cauterized
to prevent the baby from being exposed to the mother’s
blood), HAART, the long-term effect of HAART on children,
substance use/abuse, the right of a mother to refuse HIV medications
for her newborn, hyperglycemia and diabetes. The exacerbation
of existing diabetes mellitus has been associated with the
administration of protease inhibitors. As pregnancy itself
is a risk factor for hyperglycemia, it is unclear if protease
inhibitors lead to pregnancy-associated hyperglycemia in HIV
positive women.
Discussing these topics reaffirmed
our beliefs that an obstetrician with detailed and current
experience treating women with HIV, or a team of doctors,
one of whom is an HIV specialist is the best choice for a
woman managing pregnancy and HIV. The women of SMART recognize
that advocacy, empowering women to negotiate quality, culturally-sensitive
health care for themselves and their children, and education
are the best ways to assist women in their search for locating
this kind of care. Poor women of color in their childbearing
years, who account for 80% of the infected women in the United
States, are not likely to be prepared to negotiate for themselves,
hence the need for advocacy and legal organizations that will
assist a woman in negotiating her benefits and her care.
Taking a look at adolescents,
we discussed the importance of older women living with the
virus to mentor and encourage younger positive women as they
come face-to-face with their own sexuality. A wonderful connection
was made when one member of the group, who focuses her volunteer
efforts and mentoring solely on her peers—women over
fifty with HIV, decided that she wanted to seek opportunities
to nurture younger women living with the virus.
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the number of individuals infected with HIV from birth is quite
low, our group had quite a bit of experience working with children
infected at birth. Other issues that developed out of our conversation
about children infected at birth (not exclusively) were: |
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• Disclosing
HIV status to children infected at birth
This was a very sensitive
topic. We all knew of cases where the children were approaching
adolescence but were not told their HIV status or that of
their mothers. There were no absolute answers to when a child
should be told they are HIV positive. We concluded that the
time should depend on the developmental level of the child,
the parent’s comfort level, communication skills, support
and a host of other factors. Disclosure to the child was a
difficult issue, and uncovered the underlying guilt that many
mothers felt for having infected their own child with a deadly
virus. The guilt, if not dealt with, we felt, would in turn
affect when disclosure takes place, and how the child receives
the message.
• Disclosure
to partners
Disclosing one’s HIV
status to their partner was another area of concern. This
is a hefty task for a person of any sex and any age. A young
woman faced with this challenge without support may not be
able to handle it. The fear of abuse, violence or loss of
her partner may be so overwhelming that she may avoid disclosing
to her partner at all.
• Women in
prison
The treatment and care of
HIV positive pregnant women in prison really pulled at our
heartstrings. Pregnancy in prison is convoluted enough. HIV
presents another tremendous burden on a woman concerned about
the safety and health of her unborn child. The treatment and
care of HIV positive pregnant women as discussed earlier requires
highly skilled high-risk OB-GYN care. Advocating for this
type of care in prison is problematic at best.
• Women over
fifty
While this is not a group
that we usually think about when considering HIV and pregnancy,
it cannot be overlooked that grandmothers are often involved
with the care of the infants born to HIV positive women, and
whether infected or not, the child’s mother will need
support. We should not overlook the fact that there are 14,117
women over fifty infected with HIV, or 9% of all women infected
with the virus.
• Legal Issues
Advances in HIV treatment
has resulted in longer life spans and improved quality of
life for persons with HIV/AIDS. Notwithstanding this success,
estate planning and establishing guardians or standby guardians
for the children of HIV positive parents will always be important.
Legal services can be invaluable in the event that assistance
is needed in obtaining entitlements, life insurance, housing,
credit, treatment of substance use, refusing treatment for
children, etc.
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There is a critical need for
a focus on pregnant women with HIV. Women need support at
every stage of life, from birth to their golden years, and
when considering HIV and pregnancy, no stone can be left unturned.
It wasn’t that long ago that a woman diagnosed with HIV
looked forward only to permanency planning, guardianship issues,
and preparation for prolonged illness and death.
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With the support and advocacy
of other women, organizations, and dedicated physicians, a
woman can plan for a healthy life filled with many options
and hope.
This was one Saturday morning
that I will not soon forget. I am grateful for the opportunity
to have been involved in this discussion. During roundtable
sessions like these, ideas are born, organizations are made,
networking occurs, and support systems that are so desperately
needed are created. Hopefully more of my Saturday mornings
will be as dynamic and prosperous.
Ms. Cathleen Williams is
a senior trainer with Cicatelli Associates Inc. in New York
City. She is a licensed attorney in the state of New York,
and is also a Registered Nurse with an extensive background
in clinical nursing in HIV/AIDS, critical care, quality improvement
case management of special disease populations, and administrative
nursing.
Ms. Williams is a member
of the New York Chapter of the Association for Nurses in AIDS
Care, and still volunteers as a speaker for community, youth
and women’s organizations.
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