We read in our paper that Iowa is adding CF in their screening in newborn babies. Think of the year and a half of testing on Cale we could have saved! It has actually caught a lot of attention as others have noticed it a commented to me be about it. Good news. Hopefully other states will follow suit. I know we aren't the first state to do so, but it's another step forward!
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Newborn screening
- Thread starter rose4cale
- Start date
Haileysmommy
New member
I think that is great. The test is done here in CO and I was suprised that only 11 states do it. I believe that it should be mandatory in all states.
CFHockeyMom
New member
I wish it was national that way I wouldn't have to keep arguing with family members about how important it is to have their babies screened. My husband and I have struggled in getting our siblings to have their kids tested at birth and it's not just our siblings; it's their OB's feeling it's not necessary. It seems so stupid to me that such an easy and relatively inexpensive test is not done routinely.
As a side note, my brother and his wife are expecting. I immeadiately jumped on my soap box and told him to speak with their OB about our family history and to ask for newborn screening or if they have an amnio for other reasons to check for CF. He tells me that his wife has already handled all "genetic stuff" and they are "fine". I asked him how she could have "handled" it by herself since he would also need genetic testing and he tells me that he doesn't know but his wife took care of it. Why are people in denial about this? We had the same problem with my husband's sister. They at least had genetic screening but my brother in-law was only tested for the top CF genes which at the time I think was 7 out of 1000. THIS REALLY PISSES ME OFF! <img src="i/expressions/face-icon-small-mad.gif" border="0"> Sure the incidents of CF are small but why stick your head in the sand?
Done venting. Thanks.
As a side note, my brother and his wife are expecting. I immeadiately jumped on my soap box and told him to speak with their OB about our family history and to ask for newborn screening or if they have an amnio for other reasons to check for CF. He tells me that his wife has already handled all "genetic stuff" and they are "fine". I asked him how she could have "handled" it by herself since he would also need genetic testing and he tells me that he doesn't know but his wife took care of it. Why are people in denial about this? We had the same problem with my husband's sister. They at least had genetic screening but my brother in-law was only tested for the top CF genes which at the time I think was 7 out of 1000. THIS REALLY PISSES ME OFF! <img src="i/expressions/face-icon-small-mad.gif" border="0"> Sure the incidents of CF are small but why stick your head in the sand?
Done venting. Thanks.
It definitely should be mandatory in all states. I just think of the struggles and the daily fights and weigh ins at my son's Dr's office and I knew something was wrong...I didn't know what, but I knew it was something...and he continually put me and my son off. That was year and a half he could have been properly treated for. He does great now, but the stress and struggles royally pi$$ed me off too!
And as for family, you're so right. They think poor us, and then they don't even worry about their family as if it 'can't happen to them'. PLEASE! The test is simple and non invasive. Why wouldn't a family simply do a blood test??? There's a lot to be said for that piece of mind.
And as for family, you're so right. They think poor us, and then they don't even worry about their family as if it 'can't happen to them'. PLEASE! The test is simple and non invasive. Why wouldn't a family simply do a blood test??? There's a lot to be said for that piece of mind.
CF testing is not a mandatory Newborn screen in Nebraska. When I was asked after the birth if I wanted to have my son tested. I said,"No, my other kids are healthy." How stupid was I? I kick myself about that. Alt least we know now. THis test should be mandatory due to ignorance of what may be out there.
I had a newborn screen in PA but it did not catch my sons strains. They apparently do not do a full screen, they only tested for the one most common. Since my son does not have that mutation, they missed it and we spend 2 years running to doctors to try to figure out what was wrong with him.
Newborn screening is only good if they are running all the mutations.
Newborn screening is only good if they are running all the mutations.
I think it would be great if they could test for all mutations. But realistically, it would be SO expensive - and as far as I know only Ambrey Genetics tests for all of them. I think at least screening for the most frequent is a step in the right direction.
Maria (mother of three daughters, the youngest Sami w/cf)
Maria (mother of three daughters, the youngest Sami w/cf)
For people having trouble getting AMBRY GENETICS CF test covered, try Quest Diagnosics. I haven't reviewed all the information but from what I have breaifly scanned over, they (Quest) offer a similar if not exact test. Doctors and clinics seem to be much more familiar with Quest than Ambry.
When my daughter was diagnosed because of the new screenings I told my family that if all states did it you would see the numbers increase greatly. In my beliefs I believe there are many people out there living with it and not knowing it no different then some other illnesses that are there for years and not know it. We just got the bulletin from Albany med. and they have diagnosed the oldest person known with cf recently at age 80 yrs and the screening for new borns has already detected 12 new cases so there is 4 months from the time this letter came out to the end of the year so think how many cases will be by then what maybe 19-20.If 20 just here just think if all states did it and add the numbers. Many more cases then excpected....