You have just received very difficult news. But you can still have a healthy pregnancy!
We hope that this information helps answer some of your questions.
What does my result mean?
• My HIV Test is Positive
• Your baby may have been exposed to HIV
• Your doctor will talk to you about getting medicine to help prevent passing HIV from you to your baby during labor and delivery
• You will need to have a second test to confirm that you have HIV
• Your doctor will discuss treatment options for you and your baby, and other services available to you, after delivery
When an HIV positive mom and her baby receive medicine, the risk for the baby getting HIV goes form 25% down to less than 2% (1 in 50)
HIV and Pregnancy
• Your pregnancy is considered “high risk” if you are HIV positive.
• HIV can be spread from a mother to her baby during pregnancy, delivery, or from breastfeeding.
• It is important for your health and your baby’s health to see your doctor often for blood tests and prenatal visits.
• Avoid invasive procedures like amniocentesis, internal monitoring of the baby with a scalp clip or having your water broken for a long time.
• You will be given medicine to help prevent passing HIV from you to your baby during your pregnancy, labor and delivery, as well as for your own health.
• Don’t pass the HIV from you to your baby! Taking the anti-HIV medicine while you are pregnant is the KEY to having a healthy baby.
• The goal is to get your viral load (amount of virus in your body) as close to 0 as possible before your baby is born.
• Your doctor will discuss the safest way to deliver your baby. Some women with HIV will have C-sections. If your viral load is close to zero (0) your doctor or midwife may let you try a natural birth.
Labor and Delivery Go to the hospital as soon as you are in labor or your water breaks. If you are not sure if your water broke or not, call your doctor. If you see blood, go to the hospital or call 911.
Signs of labor include:
• Contractions happening every 3-5 minutes
• Contractions getting stronger or more painful over 2 hours
Passing HIV Infection to Others
• HIV can be passed through shared bodily fluids, such as blood or semen (cum).
• HIV can be spread through unprotected sex and injection drug use.
• HIV can ALSO spread from a mother to her baby during pregnancy, delivery or from breastfeeding.
• To protect yourself and your partners, use condoms when having vaginal, anal, or oral sex, even during pregnancy. You could get other sexually transmitted infections (STIs) that can cause problems with your pregnancy.
• Don’t share items that can pass blood or bodily fluids from one person to another, like a toothbrush, a razor or sex toys.
Important Things for Mom to do:
Make an appointment with an HIV specialist right away. (your doctor will refer you to one).
- Get medical care (treatment) for your HIV right away. It helps to control the virus before it gets worse.
- Your doctor will do more tests to find out how much HIV is in your body. These tests will also tell you how strong your immune system is to fight the HIV.
- You will need to take special (anti-retroviral) medicine to control the virus.
What happens after my baby is born?
Things to Do for Baby:
• Make an appointment after your baby is born to see a Pediatric HIV Specialist. (You should be referred to a Pediatric HIV Specialist before you leave the hospital).
• Your baby will be taking a special (anti-retroviral) medicine when he/she leaves the hospital. It will help reduce the chance of HIV infection.
- Follow the exact instructions for the medicine.
- Give your baby the right amount of medicine at the right times.
Newborn HIV Testing:
Your baby will receive an HIV test shortly after birth. If your baby has a positive result, it does not mean he or she has HIV. Newborns get antibodies from their mothers during pregnancy. This means the initial HIV test could have been reactive to your HIV antibodies, not their own. Another test will be needed to find out if your baby has HIV. Babies are usually tested 3 times: birth to 14 days; 1 to 2 months of age and; 3 to 6 months of age. These 3 tests are the preliminary (or first) tests.
• If babies test negative on 2 of the 3 preliminary tests, they should be given an HIV antibody test between 12-18 months. Babies who test negative for HIV antibodies at this time are not HIV infected.
• Babies are considered HIV positive if they test positive on 2 of the 3 preliminary HIV tests. Babies who test positive for HIV antibodies still need to be tested again at 15 to 18 months. A positive HIV antibody result after 18 months of age confirms HIV infection in children.
• HIV can be passed to your baby by your breast milk.
• It is recommended that you should NOT breastfeed until you know the results of your second test.
• After your results come back you can talk with your doctor or midwife about how best to feed your baby.
DO NOT BREAST FEED YOUR BABY!
- Medicine for Mom:
It is important to take care of yourself. This means you need to take your medicine. Your baby needs you to be healthy.
• If you were taking HIV medicines when you were pregnant, keep taking the medicine until you talk to your doctor about other treatments. DO NOT stop taking your medicine.
• If you were just diagnosed with HIV and are not taking HIV medicine, your doctor will talk to you about treatment that’s right for you.
Medicine for Baby:
Babies exposed to HIV should take a medicine called AZT (Zidovudine) for 4 - 6 weeks.
• It is taken by mouth and helps prevent your baby from getting HIV from you.
• Your baby should start taking AZT within 6-12 hours after being born. After your baby finishes the 4 - 6 weeks of AZT, he/she may need to take another medicine (combination of SMZ/TMP, Bactrim) to prevent a special type of pneumonia (P.carinii/jiroveci (PCP).
• Your baby should start taking this medicine when he/she is 6 weeks old and finished taking the AZT.
• Your baby should keep taking this medicine until you know for sure that he/she does NOT have HIV.
Facts About AZT
AZT (Zidovudine or Retrovir), is a type of anti-HIV drug called a nucleoside reverse transcriptase inhibitor (NRTI). This class of medicines blocks an enzyme, called reverse transcriptase, which HIV needs to make more copies of itself. AZT was approved by the FDA in 1987 for the treatment and prevention of HIV infection. This medicine is given to adults, children, and pregnant women. It is also given to babies that are exposed to HIV from their mother for the first 6 weeks of life. Because AZT was the first anti-HIV drug approved, it has been studied more than any other HIV drug. AZT greatly reduces the risk of HIV passing from the mother to her baby. It is usually given to HIV-positive pregnant women together with other anti-HIV medicines during the pregnancy, given intravenously (IV) during labor to the mom, and given by mouth to the baby for its first 6 weeks of life.
The medication your baby is taking has some side effects. The most common side effect of the medicine AZT is anemia, a shortage of red blood cells.
The doctor will monitor your baby for anemia. Your baby will get blood tests like a Complete Blood Count (CBC) to check for signs of anemia.
You should watch your baby for serious side effects.
If your baby has any of the following symptoms, call your doctor’s office right away. If you cannot reach the doctor or are unsure of what to do, call 911.
• High Temperature *If your baby is 3 months or younger, a temperature higher than 100.4. *If your baby is older than 3 months, a temperature higher than 101.
• Continuous Vomiting or Diarrhea
• Continuous Cough
• Rash that gets worse or spreads
• Unexplained weight loss or not eating
• Lethargic (extremely tired) or hard to wake up
It is important to take all medications as scheduled (when they are supposed to be taken). WHY?
Medicines only work when taken the same time every day. If you do not take medicines properly (i.e. if you miss a dose, take at the wrong time, or take on the wrong day)
the HIV virus will get worse and the medicines won’t work. If you are having problems taking your medications on time, do not stop your medications without talking to your doctor first.
Your doctor or nurse will be happy to help you find ways to help you take your medicines.
Tips to help take medicines on time:
• Take medicines when you perform a regular daily activity (like brushing your teeth).
• Set a timer, pager or cell phone to go off when it is time to take your medicine.
• Keep a calendar and write down what time you give each dose of medicine to help remember when the next dose is due
• Have someone help you:
• Tell a family member about the schedule and ask them to help remind you of when the doses are due.
• If you need someone else to give the baby medicine, have them watch you first, then watch them do it. This way both of you will know that they can do it correctly.
How do I give medicines to my baby?
It is harder to give medicine to babies because they do not understand why they must take it. Sometimes you may have to make your child take medicine, even when he or she doesn’t want to.
Here are some suggestions for giving medicine to babies more easily:
1. Get the medicine ready: take it out of its storage area, wash your hands with soap and water.
2. Make sure the medicine says your baby’s name, the correct medicine type, and looks clear, with no particles floating around.
3. Measure the amount of medicine you are to give your baby. Use a brown oral syringe or the one your doctor gave you.
4. Sit in a firm, comfortable chair with the medicine near you.
5. Put a towel or bib over the baby, or near his mouth to wipe any medicine that runs out.
6. Hold the baby on your lap. If you are right handed, hold the baby in your left arm (do the opposite if you are left handed).
7. Put the baby’s right arm around your back like he’s giving you a hug gently. Hold the baby’s left arm with your left hand.
8. Support the baby’s head and right shoulder between your left arm and chest so that the head stays still. Tilt the head back just a little. If your baby spits out the medicine or vomits within thirty minutes of being given the medicine you can give your baby another dose. If you aren't sure what to do, call your baby's doctor.
9. Put the medicine in the corner of the baby’s mouth towards the back, along the side of the tongue. This makes it harder for the baby to spit. Give small amounts as he swallows it and make sure you are not forcing it in too fast.
10. Gently keep the baby’s mouth closed by holding under the chin until he swallows.
11. It’s okay to give your baby a bottle after the medicine to wash it down.
12. Talk to the baby in a soothing way, never shout or show anger. Babies don’t know what they are doing. If what the baby is doing is upsetting you, if you just can’t take it, or if you need a break to cool off, ask for help from another adult right away. Never hit or shake a baby!
13. When the medicine is finished, hold your baby sitting upright over your shoulder or on your lap for a few minutes to comfort and cuddle him/her.
Q & A: What to do if...
What do I do if the baby is wiggling and crying and won’t open his/her mouth?
- Wait until you calm the baby down before attempting to give the medicine. You can try gentle rocking, singing, or even walking with the baby to calm him/her down first.
- You don’t want to force medicine in the mouth of a screaming baby; it can possibly hurt the baby and is a bad pattern to get into for giving medicine.
- You can use your clean fingers or the syringe to gently pry open the mouth. Sometimes the baby will even try to suck on the syringe; that’s okay too.
What do I do if someone spills or knocks over the bottle and lots of the medicine gets out?
- Call your doctor immediately to get a refill for the AZT.
What do I do if there are particles floating in the AZT?
- Call your doctor for a refill.
What do I do if the baby is sleeping?
- For the medicine to work, your baby must take it every 12 hours (twice a day).
- If you can get your baby to swallow the liquid and is never fully awake, that is okay. If the medicine drools out, it’s not okay. The medicine can’t work if the baby does not swallow it.
What do I do if I drop the syringe in a dirty place?
- Get a clean one if you have one available.
- If you do not have a clean one, wash the syringe in hot, soapy water.
- Go to a pharmacy/drug store or your doctor’s office for a new oral syringe as soon as you can.
What if the baby gets red itchy bumps, or hives and /or is breathing very fast or hard for more that 30 seconds?
- CALL 911 right away. If your child has already taken AZT in the hospital, it is not likely that the medicine is causing the allergic reaction. Something else could be causing these symptoms.
How can I make this easier?
- Use a permanent marker to mark the line on the syringe at the level of the dose. Cover it with clear tape to make sure it’s permanent for everyone.
- Ask your health care worker to show you how to make accurate measurements by lining up the syringe plunger on the marked line representing the amount to give. When drawing up liquid, make sure that the tip of the syringe remains under the level of liquid. If there are bubbles, tap the syringe to get rid of them.
Who can I call for help?
- Call 911 if it is a medical emergency.
- Call or go to your regular pediatrician’s office.
- You can go to the CNMC Children’s Health Center’s walk-in urgent care between 8:00 am and 4:30 pm Monday thru Friday or call for a same day appointment at 202-476-2123. This clinic is open to new patients.
- For a same day appointment with your pediatrician at the Children’s Health Centers in Southeast, you must call in advance.
• THEARC at 1901 Mississippi Avenue, SE or call (202) 436 3060 and for
• Anacostia Health Center at Martin Luther King Jr Ave SE, call (202) 476-6900.
- If your pediatrician is at CNMC Children’s Health Clinic or CNMC Southeast Children’s Health Centers, you can call for evening/ weekend phone advice at (202) 476-2123. This phone advice is ONLY available to patients who get their regular pediatric care at one of these centers.
- Children’s National Medical Center has a 24-hour Pediatric Emergency Room: (202) 476-5200.
Click here for a directory of services for the Washington Metropolitan Area.