We can NOT give medical opinions or advice. We can only tell what we did, why we did it, and our understanding of it. Please understand that we are NOT doctors and therefore, you should check all information found here with current research. These are the options as we know them:
- Cytogam – used to raise your ‘avidity’ and in turn the baby’s ability to fight off the virus.
- What is it? This is our understanding: Once a person has had CMV, the antibodies reside in their system just like chicken pox or mono. If that person then gives blood, these antibodies can be identified and pulled out of the blood. They can then be given to another person via an IV transfusion. This in turn gives both the mother and the baby the antibody that is needed to fight off the virus.
- How does it work? No one is entirely sure The belief is twofold. First, it gives the baby the antibodies necessary to fight off the virus and recover. Second, it allows the mom's placenta to recover and return to its job of nourishing the baby.
- What to expect when given the treatment: It is given to you via an IV line in your arm. It takes several hours to get and is often given in the same area of the hospital that chemotherapy is administered. There are also stories of people getting it directly into the placenta or the umbilical cord, but we have been told this is both unnecessary and very risky.
- What is the hope? To stop the transmission, clear CMV from the mother and baby, stop more damage from occurring, and reverse the damage already done.
- How often? Here there is a bit of disagreement in practice between doctors. The theory is that the goal is to raise your avidity to a .64. If this is the case, a mother can test the avidity after each treatment and stop once it gets to a .64. We chose to get the treatment monthly, as this is what was done in the most aggressive studies. For you here are some studies:
- Cost? Expensive. In 2014, it cost about $20,000 per treatment. In our experience, most insurance companies will cover all treatments received.
- Why is it considered “experimental”? Is it new? This treatment option has been used for many years. I have heard a story of a young lady who received it in her mother’s womb and is now an adult. In order to lose the term ‘experimental’, however, a blind trial must be done. This is a two-fold problem. One, you have to convince pregnant women without CMV to sign up to receive treatments to be the control group. As you can imagine, there are not many willing to do this. Then, you have to convince pregnant women with CMV to sign up to have a 50/50 chance of getting the Cytogam. When the treatment is quite readily available without this option, not many sign up for the unknown. Most know whether they want it or not and thus would like to make their own decision rather than leaving it to the chance in the study.
- Why is there controversy surrounding Cytogam and whether or not it should be used? Mostly, because there has not been a large enough blind trial of the treatment, and those that have been done have been done with questionable methods. We chose to follow the research of Dr. Adler and his Colleagues, which we hope to be able to link here eventually. Since a blind trial was not possible, Dr. Adler started collecting data and following the outcomes of pregnant women with CMV who did and did not receive treatment. This shows a vast difference between the two groups, so we chose treatment. Some people in the medical community disregard this evidence because it is not a formal blind trail, therefore, to many, it does not count. The studies that have been done, and are in process as we speak, are using questionable standards for admittance into the study. They are not distinguishing between moms who have had the virus before and those that have not. CMV is most harmful to an unborn baby when it is the first time the mom has had the virus. This is because her body has to figure out what antibody she needs in order to fight off the virus, then make it and use it. If she has previously had the virus, her body should already have the antibodies stored and just needs to use them. The Cytogam works by giving the mom this antibody, therefore, those that already have it stored should not need it, thus making treatment unnecessary. When the study allows moms who have a CMV infection for the second time to participate, this skews the results and makes the treatment appear less effective than it would have been if only moms with a primary (first time) CMV infection had been allowed. These questionable studies still show that the treatment helps, but only by a small margin.
- Valganciclovir
- In Utero: This is an antiviral specifically targeted at the Herpes Virus. Studies have shown that this reduces the PCR value (amount of viral load) in the amniotic fluid. There has not been any evidence that this translates into a better outcome for the baby, but there have also not been many studies done on this either. Those who use this medication go by the theory that it has to be better for baby to be swimming in less virus. This is a personal decision for you to weigh risk vs. benefit.
- Post Birth: Valgancyclovir can help a baby with cCMV fight the virus after they have been born and can help with symptoms present. If, after substantial testing, including an MRI, the baby presents with no side effects of the CMV, the only damage that can occur later in life is hearing loss. Current US research shows that a six month course of Valgancyclovir twice a day can reduce the risk of a future hearing loss and potentially restore some that has been lost. Research in Italy uses two doses per day for three months, then one a day for the following nine months. There is much debate, however, as to whether or not an otherwise healthy, symptom free cCMV baby should receive this medication, since there is a possibility of side effects.
- Post Hearing Loss: If your cCMV baby does begin to lose their hearing, take heart! Current research is showing that if this loss is found within the first three months, some of the loss – maybe even all – can be restored with a 6-12 month course of Valgancyclovir, dependent upon whose research you follow. If your child has side effects from taking the medicine orally, then a doctor in Ohio has developed a way to take the medication as ear drops instead. With this method, he is finding little to no side effects!
