*Excerpted from a Preemie-L discussion group post

What is RSV?

RSV is respiratory syncytial (pronounced sin-SISH-ull) virus. It is a very contagious virus that commonly gives adults and older children the common cold, especially during the winter. Any cold could be due to RSV. There is no way to know if a person's common cold is due to RSV or not without doing a special test. Virtually all children catch RSV at least once by the time they are three years old. When RSV infects a very young former premature baby, it can easily develop into a serious pneumonia that may require admission to the hospital for several days. Such a hospital admission may include being put on a ventilator. A single RSV infection can leave a baby with a lifelong wheezing problem. RSV can also be lethal. Clearly, we would all like to keep young former premature babies from catching RSV.

How is RSV treated?

The old saying, "there is no cure for the common cold" is true for RSV. Once a baby has RSV pneumonia, all we can do is help a sick baby's breathing and hope the baby's own immune system can fight off the RSV infection before it gets too serious. Another old saying, "an ounce of prevention is worth a pound of cure," is also true here.

Is there a vaccine for RSV?

Unfortunately, there is no vaccine to stimulate a baby's own immune system to make antibodies against RSV, as do the many "baby shots" that successfully prevent many serious diseases like pertussis (whooping cough).

Are there any other ways to keep a baby from catching RSV?

We can try to keep the RSV virus away from former premature babies. Keeping babies away from people with colds is an obvious first step. Babies who go to day care centers often catch colds from the other children. Families with other young children in school face a similar problem. If you get a cold yourself, frequent handwashing and even wearing a mask over your nose and mouth may help keep your cold from your baby, but it is difficult to keep the very contagious RSV from spreading within a household. The other option is the treatment that this letter is primarily about, RSV immunoglobulin.

What is RSV immunoglobulin (RSVIG)?

Immunoglobulins are the antibodies in our blood that help us fight infections. We do not have a vaccine that can stimulate a baby's immune system to make its own anti-RSV antibodies. We do, however, have the next best thing, which is the ability to give babies antibodies made by other people. Some people, because they have had many and/or recent RSV infections, have more RSV antibodies in their blood than most people. When such people donate blood, their immunoglobulins (including the RSV antibodies) can be separated from the rest of the blood, to be given to babies like yours who could get very sick from an RSV infection. Of course, all people, including those who donate blood, have antibodies against many types of infections. These "other" antibodies are also found in RSVIG. This creates the possibility that RSVIG could help fight infections other than RSV, (more on this later). The brand name of RSVIG is Respigam.

If RSVIG is made from donated blood, is it safe?

While it is true that blood transfusions can cause illness, blood transfusions rarely cause problems for people (and in particular babies) who receive them. RSVIG is even safer because it is treated, in ways that whole blood cannot be treated, to stop diseases such as AIDS or hepatitis that can be caused by blood transfusions.

How well does RSVIG work?

RSVIG is only partially effective in preventing serious illness due to RSV. In a large research study of RSVIG treatment of former premature babies, 250 babies were treated with RSVIG and were compared with 260 babies not treated with RSVIG. Hospitalizations were reduced by RSVIG treatment (see details below). RSVIG-treated babies who were hospitalized did not appear to get as sick and the untreated babies who were hospitalized. However, RSVIG treatment did not change the need for a ventilator. None of the babies in the study died from an RSV infection, so the RSVIG treatment made no difference there. At this time, there is no clear information available on the effect of RSVIG treatment on long term wheezing problems. However, an earlier, smaller RSVIG study showed there was no significant effect on later wheezing as there was no difference in the need for hospitalization between treated and untreated babies during the winter of the next year. In the large study, thirteen percent of the babies who were not treated with RSVIG were hospitalized with a RSV infection, while eight percent of the babies who were treated with RSVIG were hospitalized with a RSV infection. The decreased need for hospitalization with a RSV infection is encouraging, but those numbers can be looked at in another way. Those numbers also mean that 100 babies must be treated to save five babies from hospitalization with a RSV infection. In more individual terms, that means that there is a one in twenty chance that RSVIG treatment will keep an "average preemie" from a hospitalization with a RSV infection. The chance that your baby may avoid a RSV hospitalization may differ from that average one in twenty figure, (see below for details). So far, we have only talked about hospitalizations with a RSV infection at the time of that hospitalization. It makes good sense that giving additional RSV antibodies to a baby should decrease the chances of that baby needing to stay in the hospital with a RSV infection. What isn't so obvious is that RSVIG also decreases the chance of a baby being hospitalized for reasons other than RSV infection. Perhaps the other (non-RSV) antibodies in RSVIG lessen other infections. Alternatively, as mentioned above, RSVIG could lessen the chance of later hospitalization for wheezing caused by a previously mild RSV infection (althought that earlier, smaller study indicated otherwise).

If these non-RSV hospitalizations are counted, the chance that an "average preemie" will be kept out of the hospital by RSVIG treatment increases from about one in 20 to about one in 10. Again, the chance that your baby may avoid a hospitalization (with or without RSV infection at that time) may well differ from that average figure. The RSV hospitalizations are probably the most important issue, because RSV pneumonia is often such a serious illness.

Which babies are at greatest risk of being hospitalized for RSV?

Babies who were born since the beginning of last September, were more premature at birth (especially 28 weeks or less at birth), are boys, or have bronchopulmonary dysplasia (BPD, see below) are at the greatest risk. Babies who are currently receiving any treatment for their lungs (a ventilator, nasal prong CPAP, oxygen, wheezing medications, steroids, or diuretic drugs to get water out of the body) are at particularly high risk. The chance of your baby being exposed to someone with a cold must be considered. Smoking in the household also increases the risk of hospitalization if a baby catches RSV.

How do I know if my baby has bronchopulmonary dysplasia (BPD)?

First, recall your baby's due date. Then go back four weeks on the calendar from the due date. If your baby was not off oxygen by that day, your baby has BPD.

Is RSVIG treatment mandatory?

No, RSVIG treatment is something you may choose or not choose for your child. It is not an easy decision in many cases, because, as noted above, the chance that RSVIG will actually keep your baby out of the hospital is relatively low in most cases (1 in 10, overall), and the treatment is very inconvenient (see below).

Why is RSVIG treatment inconvenient?

First, the antibodies must be given through an IV over a few hours. It is not a simple shot in the leg like the usual baby shots. Each treatment will take up much of a day. Second, the antibodies wear off after about a month, so the IV treatment must be repeated every month through the winter months (typically November through April).

Where is RSVIG given?

There are a number of possible places. RSVIG may be given in a hospital, at a doctors office, or at an outpatient infusion center. In some cases, later doses may be given by a home care nurse at your home. A hidden risk of RSVIG treatment is the possibility that your baby might catch a cold at the place where the treatment is given. When making your appointment and again when showing up for your appointment, ask if special arrangements can be made to keep your baby away from people who may have colds. (These precautions are a good idea for any trip to the doctor's office, especially during your baby's first winter.)

If my baby was given RSVIG while in the hospital, must the treatment be continued?

If your baby was given RSVIG while in the hospital, you were told about it, and some of the information given here should sound familiar. For many babies at relatively low risk for hospitalization due to RSV, treatment while in the hospital, but not after discharge home, is a reasonable option. This limited approach covers the period of greatest risk (when your baby is particularly young) without the inconveniences of monthly treatments after going home.

Are there any known side effects from RSVIG?

Yes. A small percentage of babies given RSVIG will have breathing problems, fever, vomiting, allergic reactions, or wheezing during or soon after the RSVIG infusion. Breathing problems are usually due to some of the fluid that contains the RSVIG getting into the lungs. One dose of a diuretic drug will usually take care of that problem. Even when these problems occur, they are nearly always minor and of short duration. Severe, dangerous allergic reactions are possible, but they are very rare. (None of the 260 treated babies in the large RSVIG study had a severe allergic reaction.) This treatment may interfere with some of the routinely given baby shots. In particular, the MMR (measles, mumps, and rubella) and chickenpox vaccines should not be given for at least nine months after the last RSV treatment. This means your baby will probably get these baby shots somewhat later than usual.

When should these treatments be started?

In this area, the annual winter RSV epidemic usually begins at the end of November, increases quickly during December, peaks in January, and gradually decreases over the rest of the winter. Therefore, for this treatment to work as well as possible, it should be started before November ends. It can, however, be started later. Babies who are hospitalized in the Newborn ICU (or perhaps elsewhere) during the RSV season may well start their RSVIG treatment later than November.

What about the cost?

RSVIG is very expensive, costing about 1000 dollars per treatment.

Fortunately, because the hospitalizations it can prevent are far more expensive, nearly all private and government medical coverages will pay for this treatment. Still, it is good idea to check with your own medical coverage provider, to be sure you will not be expected to pay a very large bill by yourself.

Who recommends these treatments?

The American Academy of Pediatrics recommends this treatment for many former premature babies, but does so with phrases like "should be considered" and "may benefit". Clearly, the Academy is not completely convinced that RSVIG's benefits definitely exceed its disadvantages for all former premature babies. The following are our recommendations.

If your baby is currently being treated for lung problems, even on just an occasional basis, with a respirator, nasal prong CPAP, oxygen, steroids, wheezing medications, or diuretics, RSVIG treatment is strongly recommended.

If your baby is not being treated with any of the lung treatments listed in the previous paragraph now, but has been in the past three months (this includes lung treatments given while in the hospital), RSVIG treatment is recommended.

It is also recommended if your baby never needed any specific lung treatment, but was born less than three months ago.

If your baby has BPD (see above, or we can check for you), we recommend RSVIG for at least the first winter of your baby's life. If your child has BPD and this is your child's second winter, we recommend RSVIG if your child has needed oxygen at any time since last May.

If it has been more than three months since your baby was born or your baby's lungs needed any specific treatment, and your baby does not have BPD, then your baby qualifies for this RSV treatment (Jacob falls into this category for the Winter 1998/1999 flu season). However, the recommendation is not as strong in this case, especially if your baby is unlikely to be exposed to people with colds.

How do I decide whether or not to give my baby RSVIG?

The decision is mainly based on the chance of your baby being hospitalized due to RSV. Let's use the extremes as examples. Suppose your baby boy is home and has BPD, his lungs have not yet healed enough to get by without oxygen, and you have other children who regularly bring colds into your home. Such a baby has a high chance of being hospitalized for a RSV infection. That means that RSVIG treatment is much more likely to keep him out of the hospital, and therefore should be strongly considered.

On the other hand, suppose your baby girl has not needed any lung treatment for more than three months, and colds rarely enter your home. In that case the inconvenience, side effects, and cost of RSVIG treatment may not be worth it.

Perhaps an analogy will clarify this point. Race car drivers wear helmets and fireproof suits during races. Those precautions are inconvenient, but the drivers know the chance of a serious accident is high during a race, so the precautions are worth the trouble. Such precautions would be silly for everyday driving, even if there is a small chance they could save a life in a serious accident.

Another important factor in your decision is your general feeling about new medical treatments. Some people feel compelled to use all of the latest treatments. Others are suspicious of new treatments, fearing unknown rare or future side effects. Both views are held by many reasonable and informed people. Other important factors in the decision involve the inconvenience of the RSVIG treatment in your unique family situation. Some babies are more tolerant of spending a day with an IV than others. It is easier for some families to spare those days than it is for others.

Are there any treatments to prevent other viruses that could make my baby very sick?

Yes, there is influenza, and there is a standard type of vaccine for that. If your baby is more than six months old, the influenza vaccine can be given, usually in two simple shots one month apart. If your baby is not yet six months old, vaccinating everyone else in the home offers a fair degree of protection.

Unfortunately, people use the phrase "the flu" very loosely. To most people, "the flu" is any virus that makes you feel lousy. Influenza is a specific virus, one that makes most people feel especially lousy. Often one hears people say the the influenza vaccine "doesn't work", making statements like, "I got a flu shot last year, and I got the flu anyway." The influenza vaccine works against the influenza virus, but not against the many other viruses often called "the flu". So people often think the vaccine failed, when in fact it worked well against the true influenza virus.

We hope these pages have answered your questions. If you have further questions, contact your baby's doctor.

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