I was getting very choked up at the Mother/Infant Care Forum (sponsored by The Cure AIDS! Network). As I watched the slides and listened to Dr. Arlene Bardequez, I started a check list of all the things "gone wrong" during my 14 hours of labor.
I found out I was positive 8 months into my pregnancy. I knew nothing of HIV or AZT and was pretty much in shock. I was a bit past due. I was admitted and labor was induced (mistake #1: rupturing membranes). I must admit I just wanted to get it over with -- I had never experienced pain that goes along with labor contractions -- sort of like the pain of having kidney stones times 100. The instructions from my child birthing class went out the window. Demerol was useless, so I agreed to an epidural early on. In my tenth hour of labor the problems began; Margaretha was showing signs of fetal distress (mistake #2: they performed a fetal scalp sampling). Her heart beat decreased from 150 to 50, and I felt like I was losing consciousness. I overheard someone say "C-section", but it wasn't done (mistake #3: a C-section might have helped prevent transmission). She also had a meconium staining, (a sign of fetal distress).
If I Knew Then
I'm not trying to find a scapegoat for my daughter's positive status. I wish I had the information then that I have now. I would have done things differently, such as had my serum Vitamin A levels measured to see if I was deficient, asked for a viral load test, refused induced labor, insisted on a C-section at the very first sign of fetal distress, and maybe my daughter would have had a better chance. I know now, my viral load was probably relatively low. My T-cells were about 450 and I was asymptomatic. Why then, is my daughter positive? I will never know. BUT, we do know how to help future generations!
What We Know Now
Positive women want to have babies responsibly. Factors associated with Mother/Infant transmission include:
- The type of infection the mother has (acute/chronic)
- Mother's disease stage (symptomatic/asymptomatic)
- Viral characteristics (phenotype, virulence, viral load)
- Co-infections such as: Syphilis, CMV, Herpes, or HTLV
- Nutritional deficiencies, especially Vitamin A. (Note: We must be very careful with Vitamin A supplements because it's possible that too much Vitamin A during pregnancy can cause birth defects such as cleft palate or water on the brain. Yet, serum levels should be adequate for HIV harm reduction to the fetus. This highlights the need for more information on the safety of high doses of Vitamin A. According to Poz Magazine, the easiest solution might be to switch to beta-carotene, an antioxidant vitamin found in many vegetables, which the body converts into Vitamin A as needed. Beta Carotene appears to be healthy for both adults and fetuses. It is always best to talk with your doctor or nutritionist about the best vitamin regimen for you.)
Obstetrical interventions that can help prevent HIV transmission:
- no fetal scalp samplings for the baby
- no rupturing membranes
- washing the vagina (such as with a chlorhedidine lovage)
- washing the cord before cutting it
- rinsing the infant
- intrapartum therapy
- C-section (to shorten labor duration and the baby's exposure to HIV)
- possibly using nevarapine (an experimental HIV treatment) during labor.
In general, avoid invasive procedures on the baby. Because not many OB/GYNs are aware of these factors, it is important to take action -- advocate for yourself and your child. Make an action plan in case certain circumstances arise during labor so that you can do everything possible to reduce risks of HIV infection to your baby before it is born. It may also be helpful to tell someone else who is planning to be there with you about your action plan so they can help you to follow it while undergoing the trauma of labor and giving birth.
My daughter, Margaretha is 3 years old and has HIV. At one point, she was diagnosed with AIDS. Her T-cells have ranged from 500-1500 (Note: The T-cell range is higher for children; a "well child" should have 2000-3000 T-cells). When she was 2 months old she tested positive on the P-24 antigen test. The doctors told me this meant that she would never test HIV negative.
I had hoped that the odds would be in my daughters favor, that she would not have to struggle with this virus. I did not want my baby to suffer and die of AIDS-related causes. Early on, the doctors wanted to put Margaretha on antiretrovirals and bactrim. I did not feel good about this.
At the clinic where I took her for care, children with multiple sclerosis, children in wheelchairs, children who could not express themselves, children with a wide range of "special" medical problems were all seen only on Thursday mornings. I'd meet up with other moms from my neighborhood who would register their kids for the afternoon clinic session. They'd ask me "What's your kid doing here?" I was too ashamed, at that time, to tell them that my 2-month-old was HIV positive. So, I transferred her to a different clinic. I felt so guilty, I had given this virus to my daughter. A lot has changed since 1993. I no longer feel powerless over the treatment she receives. I've read everything I can get my hands on. I attend conferences, community forums and treatment updates.
Treating with Supplements
Here are some supplements I feel have aided her health. She had inflammation of the liver, chronic bronchitis, and problems maintaining weight due to malabsorption. She's a high maintenance kid, but we try to keep life as "normal" as possible!
Many people told me there was nothing we could do about Margaretha's liver. The treatments that I believe helped my daughter to combat her liver problems is as follows:
- Dandelion tincture (alcohol free)
- Glycyrrhizin (licorice root extract)
- Used in combination: milk thistle & thioctic lipoic acid (by Jarrow) (Note: The above are also very useful in helping us when taking medications that can stress our liver functions. Keep track of your Blood work/lab results, i.e., Bilirubin & Albumin levels.)
- Mini-Quick, a multimineral supplement -- 1 a day (by Twin Labs)
- Multivitamin, chewable -- 1 or 2 a day.
- Chewable vitamin C (60mgs a day)
- Chewable Co-enzyme Q 10, --1 every other day. (There is a debate over CoQ10, it may increase free radical activity
- Levocarnitine (brand: Carnitor) --1 tablet a day, (330mg.)
- Chewable calcium -1 a day (she drinks soy milk - due to lactose intolerance)
- NAC (an antioxidant formula) -- 1 cap full, mixed with Nectar daily.
- Chewable antioxidant (Solgar makes a tasty one)
- For weight gain, Poly-cose powder/soy formula. (This adds carbohydrates and calories.)
- Soy protein powder mixed with fruit nectar or soy formula.
It is CRUCIAL that the vitamins are not given all at once. Space them out during the day. For example, CoQ10 is best when taken with something fatty like peanut butter or bacon. Margaretha started out with multi-vitamins and has gradually built up to other supplements. ( Note: An excess of water-soluble vitamins like C is easily passed through the body in urine. Fat-soluble vitamins like A or E are stored in the fat and too much of them is not a good thing.)
I also give her B-12 "dots" when neuropathy in her legs becomes a problem. The "dots" are supposed to melt under the tongue, but sometimes she just chews them.
In regards to preventing bacterial infections, I've considered IVIG infusions once a month, but decided against it after discussing it with Margaretha's pediatrician, Dr. Steven Heaton. He has data supporting the use of Amoxicilin to prophylax against bacterial infections. I agree it's easier to administer and would improve the quality of her life. It's hard on a kid having monthly 3 hour infusions.
I hope that if you want to have kids, that you have learned from my mistakes. If you have a positive kid, I hope this information is useful.