Extended Interview: Mother-Child HIV Transmission
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SUSAN DENTZER: Thank you again, Mary, for talking with us. Let’s go back to 1989. Tell me what happened.
MARY: Okay, with ’89 I became pregnant. I was actually with my first husband at that time. Everything was pretty normal. We were not aware of any problems at the time. My husband at that time was six years clean … meaning that he was six years off of doing drugs and alcohol. He was a past heroine addict, went through rehabilitation and treatment, and at that time was six years without using any drugs at all, heroine or cocaine.
So at this time he was six years without any drugs usage, and I became pregnant with my son, Isaiah, and this was February 20th when he was born, and everything seemed to be fine.
In his fourth month, he started to become ill, meaning he started to develop this cough, of course, babies do develop coughs. So I was taking him back and forth to the pediatrician. I was living in Atlantic City at the time. We were taking him back and forth to the pediatrician. They were giving me Naldecon drops to give to the baby, which I did, but the cough was not really subsiding, not getting any worse, but not subsiding at all.
By the time the fifth month of his life came about, he developed this really, really strong fever. I remember picking him up one morning and he was just very, very hot. I called the pediatrician immediately, and at that time he had me bring him into Atlantic Medical Center, which I did.
They had him [in the hospital] for one week, where they treated him as they would any infant who was running a fever over 100, where they did all the tests for spinal meningitis, and there’s other things that they tested for…
[The tests] all came back negative, however, my son was not getting any better, and certainly showed signs of some type of pneumonia because the cough began to worsen to the point he was almost blue with coughing. But they were doing chest X-rays on my son but was not seeing anything on the chest X-ray. So therefore, no treatment was being done to my son because they didn’t know if it was pneumonia or not. It just looked like pneumonia, sounded like pneumonia, but they could see nothing.
So they had him in a tent. That was probably for about a week. When the pediatrician came in and saw that Isaiah at that time was not getting any better, he was then immediately transferred to St. Christopher’s Hospital located in Philadelphia, Pa.
At that time, all of us went in as a family at that time — my first husband, myself and my son. They again tested him for all the childhood diseases that could be possible. When that came out negative, they also said immediately that we would have to test the family for the HIV virus.
That was on a Friday, and that’s Monday when we came into the office. We sat with the doctor, along with the team of other medical staff where they explained to us where my first husband and myself was both HIV positive, and my son was actually full blown AIDS. So he was very sick at that time. The pneumonia had spread enough, or it was thick enough that it could be seen on a chest X-ray, although they still did a bronchoscope to really check to see if it was pneumocystic pneumonia. They could see it on a chest X-ray at that time. And with the knowledge that I have concerning pneumocystic pneumonia, when it gets to that point, it is very deadly.
So immediately they started treatment with my son vigorously, and at that time they didn’t have any drugs that was actually given to children that were HIV or at that time, for my son it was full-blown AIDS, so they were giving him AZT, or he may have begun a placebo because that was all that was available in the year of ’89.
So he received that and kind of thrived a little, but eventually he did die. My son died at six months, and the cause of death was pneumocystic pneumonia. And that was a very devastating time in my life. I was 22 at the time. I was going to school at the state college, and I was in my third year there at college. So it was very devastating for me.
However, through the grace of God and with the help of my own background with Christianity, I was able to continue to kind of live, and decided to really live and not die, meaning that I would become more educated with what was going on with HIV and AIDS, and really began to make some life changes medically, [with] my diet, and things of that nature to try to live as long as I possibly could.
SUSAN DENTZER: Let me stop you here because I want to ask you about that day you learned that your son had AIDS and that you and your husband had tested positive for HIV. How did you feel?
MARY: Very, very devastated, very alone, very isolated because at that time it had such a stigma, and I felt very lonely. I felt very guilty because I felt it should be myself on that bed, not my son. I felt why him — it should be one of us.
So I had a lot of feelings of guilt, a lot of feelings of some resentment, some anger toward just myself, like why didn’t I know, I should have known, which is why I explain it as more guilt because, of course, if I would have known, things would have been different as any counselor or psychiatrist would have said.
But as a mother I really just took it all upon myself, where I was just very, very guilty and really angry at myself, and really felt it should have been me on that bed of affliction instead of my innocent son.
So it was really difficult. My self-esteem was very shot. I didn’t feel like going on with life. I was very depressed. And then when he died, I was extremely depressed. It just fell even deeper because at the time of finding out with my son, I kind of really focused my attention just on my son. I really didn’t focus any attention on me, which tends to be a problem with women and children who are dealing with this type of situation. The mother usually does neglect [herself], and I did. I really didn’t even think about starting treatment until after my son passed…
But I just focused everything on my son, so it was kind of – it kind of kept the focus off of me, and my situation, what I had to deal with, and I just focused on my son. So I guess it kind of displaced the hurt that I was going through. So once he passed, the depression was massive, was just unbelievable, was hard to really deal with, period. It really was.
SUSAN DENTZER: And your husband? How was he?
MARY: He did survive for a few years after that, but in ’92 became ill, and then he passed on. He did die in ’96 from complications from AIDS. He did have pneumocystic pneumonia, but he had other opportunistic infections. … So I did take care of him also until he passed on …
MARY: [I was] able to be blessed and meet my second husband, who … thought it not robbery to just love me for who I am, and was very educated regarding HIV and AIDS, and accepted the fact that maybe there would be some limitations, but it had nothing to do with the love that we had for each other. It would just be some things that we have to learn and do differently, but that we still could love each other as a couple, or a married couple should, and care for each other, and hopefully eventually have a child.
That process, however, because I’ve been married now since ’99, was when I took wedding vows with my second husband, and we decided to have children probably within the second year of our marriage, and so we started asking some of the doctors that I was seeing, the infectious disease doctor that I was seeing in Englewood, New Jersey, and I asked him his opinion, and went to my OB/GYN and they were pretty supportive and directed me in the right way, which is why I’m now receiving treatment here at [the University of Medicine and Dentistry of New Jersey].
But that process was long. That process took about a year and a half, and that was just consultation, finding out the risks, finding out if it could be done. What are the risks with the child being born with the virus, what are the chances of me being okay, because that was a very great concern, particularly for my husband now because [he] was like I don’t want to have a child and then lose you.
So all these things we were investigating and doing a lot of research on, and consulted with a lot of medical staff concerning that, and did a lot of reading. And when we finally got the consensus to say that at this point now, with my health — because thank God I haven’t been hospitalized with any opportunistic infections …
So there’s been some things medically within myself that made this endeavor to have this child a lot more encouraging, a lot more successful because of the history of my health. However, there was also the concern that I would not infect my husband. So we went through intrauterine insemination. So that is how our child at this point, who will be born in about two and a half weeks, was conceived. So we went through a reproductive center, and we had that done. On the second try I did become pregnant with my husband’s sperm, and I’ve been in treatment ever since, followed very closely ever since, and so far so good …
SUSAN DENTZER: Walk me through what you’ve learned as you were making the decision about whether it would be safe to become pregnant.
MARY: Okay, some of the things that I did learn which I did not know, was how I could be treated during the pregnancy, meaning… [I thought] that I would have to come off of all my medications, and then they would just treat me for prenatal care, and treat the baby. I did learn that the baby would receive AZT. I’m not quite sure if it’s labor or afterwards. I’m not quite sure exactly when, but of course, I’ll ask the doctor exactly.
But I knew those things, but I thought that I would have to come off medication totally. But I did learn that that’s not true, based on so many studies that have happened since ’89, that there are medications that can be taken by the mother, if the mother is infected with HIV, that are not harmful to the fetus.
I was on one medication … that I did have to come off of because that was proven to be harmful to the fetus. So I did come off of that and started a new medication, another protease inhibitor, Viramune, and that was proven not to be harmful to the fetus …
SUSAN DENTZER: Do you ever worry that you will die before the baby grows up?
MARY: I do worry about that, probably like any parent would. I want to see my child grow and become an adult.
Because of my experience with death and dying, with what I’ve been through already, I know that that is something that is so out of my hands and so out of control that yes, it’s a concern of mine, but does it consume my life? It does not. What I’d rather focus on, and this again is through faith, is what I can do while I’m here, what things can I teach my child about life. Through my experiences, what am I able to endeavor into her so that she could be that strong person because I may die. I may really die just by a car accident or something. But I would hope that I’m able to instill into my daughter soon to come to be strong, and to have faith in Christ, to be able to make it and live because it’s so important to live, because no one knows exactly when their time will be when they may leave this earth.
Do I focus on dying? Yes, it crosses my mind, but I really take more of my energy to focus on what I can do right now, and what I can do to live. That’s what keeps me going. And if I die doing that, then I would have the most wonderful and blessed life that anyone could ever ask for.
SUSAN DENTZER: There will be people who will watch this show who may have this reaction. How dare this woman get pregnant and inflict that risk on a future human being. How would you respond to that?
MARY: I would respond, because I’ve had that response before. I’ve had where I’ve been called selfish and things of that nature to even do such a thing. I would say to a person like that, that I think it’s a lack of education, I think it’s a lack of really knowing what it’s like to be in an individual’s shoes, and I think it’s a very judgmental statement to make as far as to pass judgment as far as what they think the type of person I am, because knowing all that I went through to even get to this point, the furthest thing I am is a selfish person, or a careless person, or someone that just wants to do this because this is something I want to do.
A lot of things went into this before even becoming pregnant. I didn’t become pregnant and then go to the doctor and become treated. All of this was very planned. So I would probably say that that is a very judgmental person. I would probably say that that person is not educated, because if you even study a little regarding this disease, this epidemic with HIV and AIDS, to come up with that type of statement, it just doesn’t really measure up.
So I would probably most definitely say that. I would also say sometimes we — because I know we all do it as humans — we often tend to be judgmental with things that we’re fearful about. I would also say that’s a person that’s very fearful and that lives in fear. … I choose not to be a person to live in fear. I really do choose to live in faith, and in faith not in an ignorant way, but faith in a very knowledgeable and very educated way, where I’m aware of what risks and what my positives are.
So I would say also that that’s a person that lives in fear, because fear will make it so that you never be able to take any risk in life, maybe to things that you really want to do, and I would actually pity that person that really would even have that opinion about me.
But I understand, because I can see the other side of that based on my own educational background. I see very clearly why you could say something like that. I see why a person would go that route and thinking that way. …