IMPORTANT! Newborn Screening Call To Action

I write this post with some mixed feelings. Newborn Screening is important! Something parents of healthy babies have probably not even thought twice about. They give your newborn a little heal prick when you are in the hospital, send their test results away and most times the parents will never hear anything else about them. We didnt anyways until AFTER Hunter's diagnosis.  

LCHAD is one of the 31 diseases they test for with NBS. Hunter's test results came back "slightly elevated. Likely non specific. Repeat test." His second test came back normal, which according to our genetics doctor is normal for "best case scenario" LCHAD like Hunter.  What my research has turned up about his first test we should have been referred to a specialist then. Let me run something else my research has turned up by you... Some patients die in their first episode of fasting. So just add the missed opportunity for diagnosis at birth and what could have happen the first time he was sick when we kept him home instead of going straight to the hospital.... you can figure out what could of happened. 

While Hunter isn't a positive NBS story, NBS is still a huge part of LCHAD diagnosis. March of Dimes is asking us to take 5 minutes on monday to call our Senators and tell them NBS is important to us! 

Deb the founder of FOD support gave us this information about who to call and what to say.  5 minutes of your time!! 

Just follow these two easy steps:

1. Call the U.S. Capitol Switchboard at (202) 224-3121 and ask for your Senator’s office. You can identify them by name or, if you don’t know their names, tell the operator what state you’re from.

2. When you are transferred, identify yourself and ask to leave the following message for the Senator. “My name is Jane Smith, and I’m from (your town/city and state). I would like to leave the following message for the Senator: As a constituent, I am asking the Senator to support swift final passage of H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act. This bi-partisan bill helps save babies’ lives by supporting screening for genetic conditions that are deadly or disabling if not identified and treated at birth.

This legislation is incredibly important to our nation’s infants and families, so I urge the Senator to make this a legislative priority, and support final passage of H.R. 1281 as soon as possible. Thank you for your time.”

Here you can find the official Call for Action from the March of Dimes