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Anyone else have states this intense about PKU?

Posted by on Jul. 1, 2013 at 11:32 PM
  • 43 Replies

I am due August 1 with #5. With my youngest (born in Nevada), they typically screen newborns sometime before leaving the hospital and then again 2 weeks later. I declined the PKU screening at 24 hours and only did the screen at 2 weeks. Everyone was fine with it, especially given that I wasn't arguing the importance of the screening only the timing at which it was done. 

Now we live in Nebraska. I am delivering at a free standing birth center. I will likely go home 4-6 hours after birth. I went to my "going home" class on Thursday and they said they do the PKU before we leave and then again 24 hours later when we have our post-natal follow up. I spoke to my midwife at my appointment today about not doing the first screening and only doing the 24 hour one (I really wanted to skip it altogether and do it in 2 weeks at my ped, but I thought I would start here and feel out the water). I said I was confused by the information out there, including the information in the packet they sent home from the class, that said a screen done at under 24 hours wasn't terribly accurate and that I wasn't sure what they did it before we left and then again 24 hours later. I asked if I could just skip the first one and do the 24 hours one.

She kind of smiled and said she really wished that could happen. Apparently, Nebraska state law says that baby must be tested before you go home and then again at the baby's follow up. She said when they first opened (a year and a half ago) they brought in the Nebraska state medical guy (she said his actual title, I cant remember it) and they went before a judge (Maybe not a judge, the part of the who and the where is a little foggy because I got distracted by one of my kids) and basically they were told that once mom and baby leave there is no guarantee they will return so the state has to make sure they get the blood when they can. She said she argued the point that the population she serves (women who choose to deliver at a free standing birth center -the only in NE & homebirth is illegal- which is often not covered 100% by insurance if it is covered at all) don't not come back. That women who choose to birth at the center do so because they can have more control over their care and they do return. SHe was basically told the law is the law and they weren't budging. So, they bucked the system for awhile and didn't do it before discharge but only at the return visit. Then the attorney general started harassing new parents telling them they needed to bring their baby in immediately (as in, "come with me now") to be screened or he would call CPS and have their child removed and they would be arrested. Having the attorney general involved in my life is not something I'm interested in so we are just going to go ahead with the screening. It's something I would do anyway, but it isn't as accurate before 24 hours, so I just wanted to avoid an uneccessary heel prick.

It seems crazy to me though and a lot creepy that the state is this invested in getting the newborns screened immediately. The AG is a total douchebag from what I understand, so maybe I shouldnt be surprised but still. I know the screening is required in most (all?) states, but has anyone else heard of a state going to such lengths?

by on Jul. 1, 2013 at 11:32 PM
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Replies (1-10):
GoodyBrook
by on Jul. 1, 2013 at 11:46 PM

And don't you have to pay for the PKU?  Mandatory testing, paid for by you.  Something doesn't seem right here...

At the hospital I delivered at in January, a nurse came into the room to "retrieve cord blood" for the state.  I stopped her short and said we would not be participating in the program, and she got snippy and walked away...  My kid.  My decision.

kcangel63
by Bronze Member on Jul. 1, 2013 at 11:50 PM
That is awful! :(
JMmama
by Silver Member on Jul. 1, 2013 at 11:58 PM

My insurance pays for the screening. So, I guess someone other than the state pays for it, which, yes, is... fishy (not the word I'm looking for though). 

Every other thing I want to opt out of is not an issue vit K, hep b, eye goop. That is all not a big deal. They offer it, but it isn't encouraged one way or the other. At my last appointment, the nurse said that after delivery they offer ____ and listed all the standards. I told her I planned to not have any of those done and she said, "No problem. They are here if you want them". Same with the GBS antibiotics and screen. No problem, it's here if you want it. So, I don't think she would try to talk me into something that was unnecessary if there wasn't significant legal pressure, especially given that I wasn't even refusing it altogether. 

I have never heard of retreiving the cord blood for the state. That is creepy. WTF do they do with it? With my youngest two (and maybe my 2nd) the cord wasn't cut until later when it stopped pulsing and the blood had gone back into baby. Would there even be anything left to collect? Given what I am learning about NE  birthing laws, I wouldn't be surprised if they tried that here. I would not be down for it either.

Quoting GoodyBrook:

And don't you have to pay for the PKU?  Mandatory testing, paid for by you.  Something doesn't seem right here...

At the hospital I delivered at in January, a nurse came into the room to "retrieve cord blood" for the state.  I stopped her short and said we would not be participating in the program, and she got snippy and walked away...  My kid.  My decision.


SadieJames
by on Jul. 2, 2013 at 12:04 AM

PKU wasn't a problem here but the eye goop was.  I fought and fought and they cited some obscure nc law about requiring it.  So I had them let me do it.  I wiped it all on my palm.

somuchlove4U
by Bronze Member on Jul. 2, 2013 at 12:21 AM
I'm sorry you have to go through that. No TN isn't that strick about pku screening.
JMmama
by Silver Member on Jul. 2, 2013 at 12:23 AM

Interesting. What a random thing to fixate on. Although no more random than any of the others I suppose. Good thinking on wiping it on your palm.

Out of curiousity, did you look up the law once you got home? I have been doing some googling tonight about the NE PKU thing and everything I have found backs up what my midwife told me.

Quoting SadieJames:

PKU wasn't a problem here but the eye goop was.  I fought and fought and they cited some obscure nc law about requiring it.  So I had them let me do it.  I wiped it all on my palm.


JMmama
by Silver Member on Jul. 2, 2013 at 12:24 AM

It just strikes me as strange that they are so intent on it. It makes me wonder WTF they are doing with it.

Quoting somuchlove4U:

I'm sorry you have to go through that. No TN isn't that strick about pku screening.


somuchlove4U
by Bronze Member on Jul. 2, 2013 at 12:28 AM
I would think the same thing. Especially since they are fine with declining other test.

Quoting JMmama:

It just strikes me as strange that they are so intent on it. It makes me wonder WTF they are doing with it.

Quoting somuchlove4U:

I'm sorry you have to go through that. No TN isn't that strick about pku screening.


catholicmamamia
by on Jul. 2, 2013 at 12:38 AM

Quoting kcangel63: That is awful! :(

 


                
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katherinemcp
by on Jul. 2, 2013 at 7:17 AM
1 mom liked this
That's crazy- before 24 hours the test isn't accurate so what would the point be?!

I'm in MA, I 'early' discharged with my third and they did the pku that morning because it is also state mandated but we had to redo at at 2 weeks obviously. Eye roll. Then thing they had their panties in a bunch over was the hearing screen!! Its not that I'm against getting it done or anything, but give me a break- I'm sorry but for the first two weeks or so I'm not driving myself, my newborn, and my two other kids 45 minutes back to the hopital for a hearing screen. This nurse literally called twice a day for two weeks and finally my husband yelled at her- she literally threatened to call cps over it. I had already said, "Yes!! Of course I'll be bringing my baby in for a screening! But probably not until 3 weeks, I am home with the kids and my husband works long hours with our one car!"....Needless to say DH's threat of harassment complaints with the hospital were taken a lot more seriously than her saying she'd call CPS. Pffft. Call cps. I'll make them some coffee and let them snuggle my well- loved, cared for children in my perfectly clean home!!
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