Would u do the optional newborn screening tests?

rissa06

so, here is my question .  .dr gave me the information for the option newborn screening tests and it is our decision if we want to do them.  We didn't do them for our first DD.  Actually we really didn't look enough into them . . however, i was considering doing it for this one .. reasons . . my DH is adopted and we have no medical history on him . second, my mom died when i was little so we have little medical history on her . . (no one really knows her medical history and also my grandfather had alzheimers disease and so very little info on her either . . . finally, DD had problems with her blood earlier this year . .everything worked out fine and stuff and she seems to be doing well, I'm just curious to know what genetically is in our history . so, when drs ask me things . .i can actually answer. . 

so, r u doing the optional newborn screening?

TIA! 

CoastieWife08

What screening are you referring to?

The only optional screening we had for DD was a hearing test, which we did.  We didn't have an option for any genetic testing and would not have participated if we did.

1MusicMaker

We did.  We wanted to know everything we could about the little guy.

rissa06

the state we live in automatically does the hearing test . .

The list (i have to look up exactly what the tests are), but they are from the Mayo Medical Labs, Pediatrix, University of Colorado Expansed Newborn Screening program, Baylor Medical Center Institute of Metabolic Disease, 

1MusicMaker

CoastieWife08:

What screening are you referring to?

The only optional screening we had for DD was a hearing test, which we did.  We didn't have an option for any genetic testing and would not have participated if we did.

I think she is talking about the blood test where they test for blood disorders, etc.  There are something like 50 that are required, and you can do an extra 16 tests that are optional.  They don't need to take more blood or anything, so we did it.

Dawley82

I'm not getting them done mainly because I don't have any of the risk factors, but also because no matter what, I will have and love this baby.

CoastieWife08

1MusicMaker:

CoastieWife08:

What screening are you referring to?

The only optional screening we had for DD was a hearing test, which we did.  We didn't have an option for any genetic testing and would not have participated if we did.

I think she is talking about the blood test where they test for blood disorders, etc.  There are something like 50 that are required, and you can do an extra 16 tests that are optional.  They don't need to take more blood or anything, so we did it.

That's interesting.  We were never offered those tests.  I wonder if we will be this time as we're in a different state and whatnot?

lildevil968

We will do them with this LO. We never did with DD, and we found out the hard way when she was 5 months old that she had no immune system at all. We would like to know this time so we can start treatment early.

rissa06

CoastieWife08:

1MusicMaker:

CoastieWife08:

What screening are you referring to?

The only optional screening we had for DD was a hearing test, which we did.  We didn't have an option for any genetic testing and would not have participated if we did.

I think she is talking about the blood test where they test for blood disorders, etc.  There are something like 50 that are required, and you can do an extra 16 tests that are optional.  They don't need to take more blood or anything, so we did it.

That's interesting.  We were never offered those tests.  I wonder if we will be this time as we're in a different state and whatnot?

it looks like its a copy of the pamphlet directly from the state . .  the state currently does 20 . . as part of their newborn screening . . 

CoastieWife08

rissa06:

CoastieWife08:

1MusicMaker:

CoastieWife08:

What screening are you referring to?

The only optional screening we had for DD was a hearing test, which we did.  We didn't have an option for any genetic testing and would not have participated if we did.

I think she is talking about the blood test where they test for blood disorders, etc.  There are something like 50 that are required, and you can do an extra 16 tests that are optional.  They don't need to take more blood or anything, so we did it.

That's interesting.  We were never offered those tests.  I wonder if we will be this time as we're in a different state and whatnot?

it looks like its a copy of the pamphlet directly from the state . .  the state currently does 20 . . as part of their newborn screening . . 

I just went and looked at the info for the state DD was born in, and it looks like they did testing. I honestly had no clue.

It was probably on some form I signed right after birth when I was so freaking out of it, LOL.  I think I may have signed my life away that day.

Anyway, thanks for pointing this out.  Live and learn.

rissa06

no worries. . 

ABAMom

Just scheduled mine - I believe you are referring to sequential testing. The first set is a blood test and ultrasound which is done in the first trimester (I think 9 - 11 weeks, but I could be wrong) and the second is  done in the 2nd trimester and I believe that is a blood test only.

 I was against it originally because we would have the baby regardless. However, as DH pointed out, at least we can prepare ourselves ahead of time.

SarahRick0906

Testing can be a difficult decision to make.  With my first pregnancy I did all the testing because my doctor recommended it. (I was 34)  At week 16 we got a phone call that there was 1 in 80 chance of my son having Trisomy 18.  I had never heard of it, but it is bad...basically a death sentence for all babies.  To make a long story short we had to see a genetic counselor and have 2 level II ultrasounds.  The doctor said everything looked good, but the counselor and even one of my OB's wasn't convinced. So even though in my and my husbands heart we knew it was a false positive, we spent the rest of the pregnancy scared to death.  Our son was born perfectly healthy-thankfully!  Now with pregnancy #2 I'm skipping all of the testing-I just want to enjoy every minute and will face whatever comes when the baby is born.  I wish you wisdom and clarity in making the best decision for you and your baby.  Best of luck!

Jennicap

Our baby will go through a couple tests once he/she is born due to my stepson having a very rare genetic disorder. But other than that I doubt we'll do any other testing, though the ones we want are intensive enough!

mariah41

it's very personal, but just keep in mind that the tests can be very inconclusive and are not diagnostic. ie, they can't tell you anything concrete, but rather only if there is 'a chance'. if they do say that there is a chance, then you have the option of doing more testing, in the form of amnio, which is in itself, potentially dangerous. and even then, i know of someone who did all of that, got a positive for downs, and then had a baby born 100% healthy. so you really never know.

Bride2006Octobe

Yes! I highly recommend expanded newborn screening. You should read up on what testing is being offered to you. However, some of those conditions are metabolic conditions that are treated with diet modifications that can prevent significant complications, including mental retardation. Do it!