the midwife`s journal <
33. hiv, and being a mother
A few months ago a young woman who is HIV positive contacted me for advice about breastfeeding. She is well, and she was very keen to give her baby her breast milk, even if it meant expressing and some sort of heat treatment.
There was a lot of discussion about the issues on LACTNET, and many people encouraged her. Many unanswered questions were raised. What is the mechanism of passing infection from the mother to her child? Is it possible that some babies of positive women would be better off being breastfed than not? We thought about the fragile nature of the virus, possible methods for raising the temperature of the milk to a satisfactory level to destroy the virus, without damaging other important factors in the milk and other options.
The woman was under the care of a specialist obstetrician at a large teaching hospital. The doctor's opinion was that vaginal birth would present a higher risk of infection to the baby, so a booking was made for a caesarean. This opinion, which seems to be based on fear of blood contamination of the baby, has not been established as fact, but the woman accepted the booking.
A few weeks before her baby was born the woman called a conference at the hospital with the paediatrician, GP, her husband, a friend from a breastfeeding mothers' support group, and me. The obstetrician was not able to attend.
The paediatrician persuaded her that any sort of breastmilk feeding with her own milk was extremely dangerous. He put it to her that babies who are not breastfed may be more likely to catch colds, but in her case it was a cold or a coffin. "I couldn't sleep at night with that on my conscience" he said. It was as though the woman's desire to breastfeed was totally selfish and emotional on her part, and she had to think of the baby.
The baby girl was born and is thriving.
I will not try to tell the story of isolation in the hospital, and yellow plastic bags that screamed 'biological hazard' to all who knew the language. Since many HIV positive women do not know their status, and there is no reliable routine testing, it seems unreasonable to treat the known victim differently from the potential victim. Then there was the struggle the woman had to insist that her baby would receive donor breastmilk while in hospital. Her grief at her inability to breastfeed was strong enough to make her assert her right to determine the alternative method of nutrition.
There are many stories for the woman herself to tell, when she is ready. She suppressed her lactation over the ensuing weeks. The beautiful baby is receiving antiviral treatment, and her blood tests are good.
There is a silver lining on this cloud.
The baby's predominant food since birth has been breastmilk donated by other women. This is unpasteurised and totally uncontrolled, as there is no treatment facility for human milk in Melbourne. The condition I asked was that the donor woman had blood tests to exclude hepatitis and HIV. One woman has been giving 600-700 ml each week.
The mother brought her baby, now 16 weeks old, to visit me this week. She told me how the provision of milk has continued, and how this other woman has become her 'angel'.
I want to briefly record what I know of this 'angel'.
Occasionally a woman will call me to ask if there is any way she can give away her excess milk. The 'angel' phoned me at the right time. "Yes," I said, "there is someone who needs your milk."
The first time the baby's father went to collect the bags of frozen milk the donor woman seemed quite uneasy. She had not previously been confronted by the stark reality of HIV infection. It is somewhere else, out there.
The next 'pick-up' time the young father brought a photo of his baby daughter. The donor woman cautiously told him how strange she felt - she knew that she or her baby could not be hurt by giving her excess milk away; that her fears were irrational; and once she talked about them she started to feel much better. The father reassured her in his own gentle way.
The time came when the young mother herself went to collect the milk. I think this has been a big step for her too. Most of her friends do not know of her infection. They do not know why she is not breastfeeding her baby. Most do not know that the milk she gives her child is from her 'angel'. She knows she has enormous challenges to face in the coming years, as her daughter grows, and as her own health is being monitored closely, watching for signs that the dreaded infection may assert itself. It is a journey that most mothers do not even have to think about. Yet it is her journey, and as she embraces the life that she has, she will be giving a lasting heritage to her daughter, her husband, and all who love her.