Research

There is an organization called Saving Little Hearts that is dedicated to congenital heart defects and I invite you to go to their website: savinglittlehearts.com and snoop around. It is an amazing resource center! There is something in particular I wanted to tell you about!

As I mentioned in a previous post, there is not much happening to improve prenatal and post partum screening in newborns to help these babies. One of the tests that would be noninvasive, quick and cheap to do is pulse oximetry screening. All a nurse would do is wrap a little wire around the toe of a newborn baby and in a instant, she would know exactly how much oxygen the baby is getting. For cyanotic babies, oxygen levels are not 100. Parker Jay scored an 8 on his apgar scores, he was not blue, he did not look like he had a heart defect right after birth. When they put on the pulse ox, it was 80. Something was clearly wrong. We already knew of course, but what if we hadnt - would they have sent us home?

In Tennessee, the "Tennessee Task Force on Screening Newborn Infants for Critical Congenital Heart Defects met and reviewed what was known on this topic and they estimated the incidence of critical congenital heart disease is 170 in 100,000 live births, and of those, 60 infants have the potential for shock or death if the diagnosis is missed. They also found that the diagnosis is missed in 9 infants by fetal ultrasound assessment and discharge examination. These babies might have been diagnosed by a screening program. Getting the right diagnosis in these infants before discharge could spare many of them death or neurologic problems." A bill was passed on June 11, 2007 to allow further study and as of Oct. 2007, several hospitals in Tennessee are testing every baby before they are discharged, a few that have the equipent to test every baby in place, and also hospitals waiting for doctors to come by and set up the program. That is FANTASTIC!

On the Saving Little Hearts website is a link under "News" called "Expanding Newborn Screening Appeal" and there is a format for a letter to send to The American Board of Pediatrics and the American Academy of Pediatrics. The addresses are right on the page. All you have to do is print it off, and stick it in the mail! I think there is an electronic page as well.

I LOVE when there is something to do in a situation when I feel like I have no control! I feel like the best thing I can do for Parker is to make sure he has the best doctors and the best care possible. I am now finding out that there are things I can do to support research so that the doctors have the information they need to do their best!