Friday, January 11, 2008


If there is a medicine available to prevent a pretty serious illness in infants and toddlers, shouldn't everyone have access to it?

Bronchiolitis is a lung infection caused by RSV, which occurs in epidemics every winter. It leads to a serious infection of the lungs only in children under 2 years of age. It causes wheezing, rapid or tight breathing, coughing, fever, nasal congestion. Bronchiolitis can lead to ear infection, bacterial pneumonia, and even an increased risk of asthma. The illness can last for up to 14 days and, as you can imagine, makes a baby extremely uncomfortable.

This virus is spread by someone sneezing or coughing up to 6 feet away from another individual, or by touching something which an infected person has touched. Considering that babies have to go to the doctor at the very least for well-baby checkups at one, two, four, and six months, etcetera, it is reasonable to assume that every child runs a risk of catching this virus.

There is a monthly shot called Synagis which can prevent babies from getting RSV and bronchiolitis. The only problem is that it is EXTREMELY expensive, and insurance companies often deny treatment to "healthy" babies. Rather than try to keep all infants healthy, they decide to play a game of Russian Roulette with the health and safety of thousands of children. They have a list of criteria to decide if a child is "high risk" enough to warrant this preventative treatment.

Apparently, our boys are not "high risk" enough. They were born a month premature. Each developed Respiratory Distress Syndrome while still at the hospital and had to be admitted to the NICU. One twin developed one pneumothorax and had to be in an oxygen hood for a day before graduating to a nasal cannula for another day and finally being discharged without oxygen. The other twin popped TWO pneumotoraces, spent a day in an oxygen hood before being intubated and given two doses of surfactant to mature his lungs. He spent a total of 12 days in the NICU before being discharged without oxgyen. After only one day at home, he had to be put back on oxygen and remained on it for over a month.

According to our insurance company -- which is a big company and considered to be one of the best, by the way -- our boys were not preemie ENOUGH, and since they went home without oxygen (despite the fact that one immediately went back on), they didn't need Synagis. We were denied.

Keep in mind, too, that any baby with complications, such as our little guys' lung issues as well as heart problems, is going to spend a lot more time in hospitals and doctor's offices than even a so-called "normal" baby would. Where better to be exposed to a cold virus than in a hospital or a doctor's office? One kid coughing six feet away could do it. Some parent with just a mild stuffy nose who used the same pen as I did in the hospital could do it. This virus is everywhere, yet insurance companies are turning people down for it left and right!

My pediatrician told me about a family where both parents are deaf, and thus unable to hear their baby coughing or choking or in some kind of respiratory distress. Their baby was premature. But not premature ENOUGH to qualify them for this drug, despite the extra complications involving the parents.

Well, our little guys who were seemingly not at risk enough for prevention, managed to pick up this virus. Most likely last week when we were at the hospital. Now they are lethargic, unable to eat, and hacking up sticky yellow mucus from their lungs. We have to be in contact with our pedi on a daily basis just to make sure we don't need to take a trip to the hospital for further lung treatment or an IV drip to hydrate them. We can't let them sleep on their backs. We can't leave them alone when they sleep, since this infection has also been associated with sleep apnia.

And I have to sit here and look into their little bloodshot & watery eyes and know this could last for another 2 weeks.

And know that this could have been prevented.

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