I've spoken briefly about finding out I was living with HIV when I got pregnant with my daughter, but I haven't really spoken on the entire experience. Although I have come to terms with my status and even embrace it, thinking back to that time can still be painful. I know full and well I did not receive the full support or services I should have from my medical care provider. I think of how different and probably how much more at peace I could have been, especially while being pregnant, had I received the support I needed early on. I want to share my experience in hopes that it can help other women who are pregnant and living with HIV to know they are not alone, they can get through it, and most importantly, that the chance of their babies becoming positive can be slim to none. I also want to encourage those who are newly positive to tell at least ONE person they feel they can trust. I went almost two years without telling anyone.
I found out my status after my very first prenatal visit. I had done all the tests and blood work that they do when you initially become pregnant. I want to say about a week later I received a phone call that something had come up in my blood work and they needed me to come in as soon as possible. That call sent me into a panic. I was able to go in a few days later and they broke the news to me. I was devastated. I was 27 years old, pregnant with my first child, and all I could think was how I was going to die young and not see my child grow up. I had the midwife, social worker, and a woman from the clinic's HIV program all telling me otherwise but at the time it was impossible for me to believe. In my mind, I knew my life was over.
I began taking medication about a week or so later. At the time I was taking it with fear that if I didn't, I would die even sooner. I took it to prevent passing the virus on to my baby. I was undetectable within a month or so.
I was told I couldn't breastfeed and that was heartbreaking for me. When you're pregnant that's one thing you constantly hear about: breastfeeding and how good it is for the baby. How it's the best thing a mother can do for her child. You hear all the statistics and comparisons of babies who are breastfed and those who are not. You hear about the bond between mother and baby that breastfeeding creates- a bond like no other. I was so worried my daughter wouldn't bond with me and because of that I wouldn't let anyone else feed her for the first four or five months of her life aside from her father. It's also the one question you are constantly asked, "Are you going to breastfeed? No? Oh why not? But it's so good for the baby. You should at least try it. You know you can always pump too." Each time someone asked me that I just wanted to scream.
Throughout my high risk pregnancy (which was noted by a big "high risk" sticker on my appointment card), not once was I ever pointed in the direction of a support group or agency for support. I had no idea agencies like that existed until a couple of years later. Living in New York City, people living with HIV have a number of resources available to them including assistance with housing and rent, etc. but I wasn't told about those services (which would have really come in handy at the time).
I ended up having my daughter three weeks early because she was measuring much smaller than she should have been. I had gone in to be induced and the plan was for me to have a natural birth since I had been undetectable for the majority of my pregnancy. The universe had other plans and I ended up having a C-section.
I remember the nurse hanging a bag of antiretroviral medication for me and me having to ask her to hide it somehow because at the time, my family didn't know about my status. After having kids themselves, I knew my mom and sister would probably ask about the strange colored bag hooked up to my arm. The nurse put a sticker over the part of the bag that had any information on it. Out of all the nurses and doctors that day, this one particular nurse was the kindest and gentlest with me. I'll always be thankful to her for that.
After my daughter was born she was taken right away to be checked out as they finished up my C-section. The nurses explained to me that when we took our daughter home, I would have to give her medicine every six hours for the first six weeks of her life. I was terrified and felt so much guilt as a mom knowing that she was just born and already she has to deal with something because of me. I remember the day we were leaving the hospital, one of the doctors (an extremely rude doctor) came up to us and asked if we had any questions about the medicine we would have to give our daughter. When the nurses were giving her the medicine in the hospital, it was in what looked like a little pre-packaged syringe. I asked the doctor if the medicine would come the same way as in the hospital or would I have to measure and stuff myself. Immediately she says, "You see! Who told you that you could be discharged today?" Telling me how this was important and stuff like that. I asked one question and got bombarded as if I wasn't taking this seriously.
The first three weeks of my daughter's life we lived in my in-laws' living room while we waited for our new apartment to become available. It was one of the hardest three weeks of my life. No one in our families knew about my status. No one knew the baby had to take medicine. I had to be sneaky when giving my daughter her medicine so no one would see. It was so scary and stressful. At the same time, I was recovering from a C-section and having to get up every two hours to feed my tiny 4.5 pound baby.
Along with giving my daughter medicine, I also had to get her tested for HIV at four weeks, four months, and nine months (it's been many years, so I might be off with the age of testing, but it was all within the first ten months of her life). She was also tested at birth. Let me tell you, the mom guilt that comes with having to get your baby tested for HIV is unreal. I felt like a failure of a mom already. Each time we had one of those appointments, I was a mess the entire day. I would cry while I walked to the doctors office. Unfortunately, I had two very unpleasant experiences with trying to get my daughter's testing done. One was with the very rude doctor I mentioned earlier and the second was with another doctor. I thank god every day though that my daughter is HIV-negative and healthy.
I think back to the first year of my daughter's life and how much I struggled emotionally. I was newly diagnosed, a new mom, and looking back I know I suffered with either postpartum depression, postpartum anxiety, or both. I was terrified to ask anyone for help. I was afraid that I would be seen as a bad mother, that I couldn't handle it. My emotional state even left me thinking if i said something, they would take me away from my daughter.
Sometimes I think of how different that first year could have been had I received more support from my medical provider. If I had been pointed in the direction of a support group, if I had been assigned a peer navigator, someone who KNEW firsthand what I was going through, would my experience have been different? Would I have been able to cope better? I think so, but I'm also pretty proud of myself for coming out of that dark place on my own. I want to help other women who are going through the same situation or similar to know that they can and will get through it. That we are our best advocates and we deserve the best care, just as anyone else. That our status does not define us nor is it the end. For me, my status was a new beginning. Along with being a new mom, this experience made me look inward and really examine myself over the years and what led me to that point where I was told I have HIV. I've been determined ever since to live a grateful, healthy, happy life for myself and my family.
Thank you for sharing!
OMG! I cannot imagine your experience here. We all have so much in common but so much they is drastically different. Wow! Just wow!!! Hugs to you and that beautiful baby girl!
Thank you so much! Yes I
Thank you so much! Yes I think not matter how different our stories may be we can all relate to one another and how we felt. Sending you so much love!
Thank you for your
Thank you for your transparency. I have heard so much about provider incompetence when it comes to pregnancy and hiv. I'm so sorry you had to experience this but an so happy you are here to share your experience and be a light to others. A bug hug to you and your baby girl xoxo