The most stressful week of my entire life.

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PeppermintPatty's picture
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The most stressful week of my entire life.

Hey ladies,

I haven't been on here too much. I realize I do need to put some pictures of Daniel up here as well. I had a c-section, so the birth story isn't too exciting! Wink

The stress stemmed from Daniel's initial newborn screening. I recieved a phone call last Friday letting me know that there was an abnormality flagged on the screening and that further testing was needed. I asked her where the flagged result was and the nurse told me under a fatty acid oxidation disorder. I googled it and was so freaked out by the disorder. I cried and prayed and begged to the Lord to wrap Daniel in his arms and heal him (at this point I was convinced he had the disorder) How can a blood test be wrong?? We took him the following day for a repeat nbs test and then the agonizing wait began.

Over the past week, I called some genetic counselors (from the University of Chicago) to prepare myself as well as talking to nurses from the the newborn screening lab down in Springfield. I asked everyday if his second screening was processed yet. Each day, they told me it wasnt but would be soon .

Yesterday,a nurse from our ped. office called telling us the 2nd screening came back abnormal and gave us the info to call the genetic doc in Rockford asap. We were devastated. Come to find out {she called apologizing} she was looking at the first screening and the second one hadnt even been posted yet!!!!! Ooops, a mistake that stressed us out big time. We ended up getting a hold of the doctor who my dh phoned after the nurse's call who said he did'nt see any concerns with Daniel's first screening other than a carnitine level right above cut-off {hence the flagged result}. He said the second screening should be normal. I then got another call from a nurse at the newborn screening lab who told me his second screening came back and the preliminary results are normal!!!!!!!!!!!!!!! I told dh, I won't rest until the definitive results are signed off and sent to doctor and the case is closed!

Newborn screenings are scary, important but scary! Thanks for reading and your prayers.

nori_garsi's picture
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How scary, but I'm glad to hear it sounds like his tests are going to come back normal.

Danifo's picture
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Glad to hear it looks like things will be ok.

I was involved with our provincial newborn screen and I know that lots of them can have false positives because they are looking at certain parameters that vary based on gestational age, size, gender and so on. They try to make the cut offs broad enough to catch all affected babies. Even though it is stressful waiting, early intervention if necessary can make all the difference.

My cousin was born with PKU when they first brought in the screening program. My aunt cried for the first week feeling that her daughter was defective/broken and all she could hear was severe mental retardation. Because of the screening program, her diet was carefully controlled and today she is a pharacist and runs marathons.

bamsmom's picture
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I can't imagine the stress, but I am glad to hear it looks like Daniel is going to check out just fine!

mandi04's picture
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I can't even imagine how stressful that'd be, glad everything looks fine now though!

indianajones's picture
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Oh thank goodness it is turning out ok! What a stressful week!

Cherrykitten's picture
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What a scary week you've had. I'm glad that the inital results are showing normal. Keeping you guys in my thoughts until the final resutls are in!

Starflyr's picture
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I'm so glad he's ok!

The thing about newbOrn screening is that they have to catch asmmany realmpositives as possible, and since no test is perfect, they end up catching some false negatives. In their view, better to freak a few families out over nothing then to reassure some families that their child is ok when in reality, they aren't. And disorders are chosen to be on the NBS based on a lot of things... But they can all be treated.

:hug:

heatherliz2002's picture
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Wow, what a stressful/scary week! I'm so glad that it's looking like things are going to be just fine! Hugs!

Roobear's picture
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I am so glad to hear that things are ok with Daniel! What a scary week you've had!

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Oh Goodness... I can't imagine the stress with a test coming back flagged like that. Sounds like everything is turning out okay. So glad Daniel is okay.

ekcanada's picture
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What a blessing Daniel is okay. I wonder why they were so confused...