Question about the religious exemption in our state for newborn screening

[BRmama]

Xposted on Birth and Beyond forum

Hi, I'm 32 weeks pregnant and I'll be avoiding the vit. k, eye ointment, and hep b shot. Here's a little background:

Our state only does religious exemption for newborn screening. After I spoke with the nurse from the state health dept. she said that they don't do exemptions for newborn screening and I need to go to the hospital where I'm delivering (IMC) to get the religious one. Then I explained to her further what I am trying to avoid and that the law in our state only does religious exemption for newborn screening. Then she said that I need to go to my local health dept. and get a religious exemption there, so now I'll be checking the hospital for an exemption and the local health dept here but I doubt the hospital would have it, I always thought you got those things at the health dept.


So my question is this: Is the religious exemption for newborn screening any different than a religious one for immunizations? I know that for the hepatitis B shot I can just refuse it.

TIA

[Xavismom]

Did someone tell you that you needed an exemption for this? We didnt do any of that either, and no one at the hospital even batted an eye about it. We just said no, and no one even brought it up again.

Well we did do the Vitk, but at first we were NOT going to, and no one had a problem with us not doing it.. we changed our minds after Xav came out bc he was posterior and shot out like a freaking rocket, and he had a massive bone bruise on the top of his head, so we changed our minds to be safe. But we didnt do any shots, PKU, or eye goop.

[BRmama]

Hey Melissa, which hospital did you deliver at? I'm delivering at IMC. The thing is I read online at this site http://www.vaclib.org/exempt/utah.htm that our state requires a religious exemption to not do those three things and the pku as well. Also last year when I had Landon his birth was a traumatic one so we did the vit. k (not knowing what we know now but now I'm glad we did) except we didn't want the hep B shot and they kept pressuring me so much that I finally just gave up, I was too weak to fight them and caved in to the shot. So now we're doing a birthing plan just to make sure that our wishes are met. I xposted this on the birth and beyond forum and a Utah mama said that when she had her son a couple years ago she wanted to avoid all three of these procedures and so they signed a waiver at the hospital and that was that. So I'm hoping it'll be as easy as that for us, just signing a waiver, but we'll see.

[Xavismom]

I didnt even have to sign a waiver, or at least I dont remember doing so. I was at the U. I think they are pretty laid back there, no one cared that we didnt want him bathed and left his vernix on either, or anything else we did out of the norm.

Was this the hosp you had Landon at too. or is it going to be new to you? If they give you any grief, just keep saying no, or make it your husbands job to keep saying no, and dont let the LO out of your sight.

The U told us the only legally mandated thing in Utah is the hearing test, so we had that done and my husband went with Xavi and stayed with him the whole time. Even though they were great, I still didnt trust them, I've heard too many stories of babies taken away for tests, and coming back after having a shot or some other thing parents did not want (like that poor boy who was just circed against his parents wishes!!!)

[BRmama]

Thanks Melissa. Yeah unfortunately it's the same one. For a while I didn't have a health care provider and we wanted to go with a midwife but we couldn't afford one and the U isn't covered in our insurance. (I've heard great things about them) my mom was a cna there at the nicu for a while and she loved it.

Anyway that's good to know. I don't want them bathing him or poking him. At least not in the first day. I'm still researching about pku testing and the benefits but I just think that poking and squeezing the heel is so harsh, and this time for sure not the hep b shot. The thing is my ob is fine with us refusing the hep b shot he just doesn't know yet that we also want to refuse the other things (I'm sure he wont care). Last year it was the nurse and the anesthesiologist that kept pressuring us. When I had Landon I made sure he roomed in with me at all times and I walked him to the hearing test. I don't trust them either but holy cow I've never heard of a baby boy being circed against his parents wishes. Wow was it here in Utah? Poor baby

[Xavismom]

No, this recent one was in Florida There was another one a while back, where two babies/mamas were in one room, nurses took the babies for tests, and circ for one. They circed the wrong baby I read about that one while I was preg, and it freaked us out.

We did do the PKU, but not in the hospital. I totally agree its pretty harsh to do to a 1 day old nb. We had our Ped do it, and we only did it because I am hypothyroid, and one of the things the PKU tests is thyroid function, we needed to make sure his TH levels were ok bc mine were off.

[SundayCrepes]

There was a baby in our mom/baby group that could not metabolize fat. It was a total shock to the parents. There was absolutely no family history to indicate this was even a remote possibility. It was found in the newborn screening. Had he not had that test he would have died. Through dietary changes he was flourishing the last time I saw him. He is the rare child that has any of the diseases they screen for. He is the child that justifies testing of seemingly healthy babies.

Genetic tests don't need to be traumatic. Just do it while they're nursing. Both my kids were tested that way and it was no big deal. Make sure they warm the heel before they poke then nurse away.

When my son was born and my daughter was adopted we did the expanded newborn screening. http://www.perkinelmergenetics.com/NewBornScreening.htm

It tests for more than 50 genetic diseases. It really bothers me that states don't mandate all the tests when genetic screening is done. There are children who will fall through the cracks because of that. What a shame.

My daughter received the hep b shot before we could get to her. The birthmom did not have prenatal care and was at risk for hep b. I think that is an appropriate use of the vaccine, to prevent hepatitis in a newborn. However, once we got back the mom's hepatitis results our daughter has had no more vaccines.

BTW, I hope the parents of the child circed filed a lawsuit. I think they should also press criminal charges for child abuse, sexual abuse, false imprisonment (tying the child down) etc. Child abuse must be stopped and people like that are in a position to make some headway.

[Xavismom]

Originally Posted by SundayCrepes

Genetic tests don't need to be traumatic. Just do it while they're nursing. Both my kids were tested that way and it was no big deal. Make sure they warm the heel before they poke then nurse away.

I nursed X for his PKU and when we checked his iron levels at 9 mo.

BTW, I hope the parents of the child circed filed a lawsuit. I think they should also press criminal charges for child abuse, sexual abuse, false imprisonment (tying the child down) etc. Child abuse must be stopped and people like that are in a position to make some headway

They are, not sure exactly what all the charges are though... There is a big thread on it in the circ forum here. So so so sad though.

[myfairbabies]

Livia, I had Claire at IMC, you don't need any kind of exemption to decline those things. The only thing they gave us grief about was the PKU, which we wanted to do at our midwives, but we went ahead and did it at the hospital because they said something about how if we declined that then there was a chance our insurance wouldn't pay for anything blah blah blah because it was a law. We had them do it the last day we were there. We had one nurse that was really rude about stuff- "Ew, If we don't bathe her, then we have to wear gloves every time we touch her" "Um, I'm actually not asking for permission, I'm just telling you that we're doing a blood sugar test per our policy". We told the head nurse that we never wanted to see that girl again, and we didn't. Make sure your husband knows everything you want to decline and that he can say "NO!" if you feel pressured. If you get a lame nurse, ask for a new one. And don't let him out of your site! We even got charged for Hep B, but I KNEW that she didn't have it because she was with one of us at all times.

[BRmama]

Originally Posted by Xavismom

No, this recent one was in Florida There was another one a while back, where two babies/mamas were in one room, nurses took the babies for tests, and circ for one. They circed the wrong baby I read about that one while I was preg, and it freaked us out.

We did do the PKU, but not in the hospital. I totally agree its pretty harsh to do to a 1 day old nb. We had our Ped do it, and we only did it because I am hypothyroid, and one of the things the PKU tests is thyroid function, we needed to make sure his TH levels were ok bc mine were off.

How sad . I'd be so livid if it were my baby. Anyway I'd like to do this test on my baby because after reading more about it would be a good one. I would love to do it at the ped's office while nursing him. I wonder if this hospital will be okay with that. Thanks for posting

[BRmama]

There was a baby in our mom/baby group that could not metabolize fat. It was a total shock to the parents. There was absolutely no family history to indicate this was even a remote possibility. It was found in the newborn screening. Had he not had that test he would have died. Through dietary changes he was flourishing the last time I saw him. He is the rare child that has any of the diseases they screen for. He is the child that justifies testing of seemingly healthy babies.

Genetic tests don't need to be traumatic. Just do it while they're nursing. Both my kids were tested that way and it was no big deal. Make sure they warm the heel before they poke then nurse away.

When my son was born and my daughter was adopted we did the expanded newborn screening. http://www.perkinelmergenetics.com/NewBornScreening.htm

It tests for more than 50 genetic diseases. It really bothers me that states don't mandate all the tests when genetic screening is done. There are children who will fall through the cracks because of that. What a shame.

My daughter received the hep b shot before we could get to her. The birthmom did not have prenatal care and was at risk for hep b. I think that is an appropriate use of the vaccine, to prevent hepatitis in a newborn. However, once we got back the mom's hepatitis results our daughter has had no more vaccines.

BTW, I hope the parents of the child circed filed a lawsuit. I think they should also press criminal charges for child abuse, sexual abuse, false imprisonment (tying the child down) etc. Child abuse must be stopped and people like that are in a position to make some headway.

Hey SundayCrepes how's it going? Thanks for posting and for the website. I'm still looking through it, very interesting. I definitely want to do the genetic testing while I'm nursing my baby. I still have some questions about it though since I'm still researching and learning about it. Yeah in your case it was good that they used the hep B vax, in my case they were really pushy with my first one and since I was in the middle of my cesarean still wide opened when they pressured me I had no strength left to fight them.

ETA: Forgot to ask, when you did the expanded genetic testing did you take a package from them with you to where you delivered or was the place affiliated with them?

[BRmama]

Livia, I had Claire at IMC, you don't need any kind of exemption to decline those things. The only thing they gave us grief about was the PKU, which we wanted to do at our midwives, but we went ahead and did it at the hospital because they said something about how if we declined that then there was a chance our insurance wouldn't pay for anything blah blah blah because it was a law. We had them do it the last day we were there. We had one nurse that was really rude about stuff- "Ew, If we don't bathe her, then we have to wear gloves every time we touch her" "Um, I'm actually not asking for permission, I'm just telling you that we're doing a blood sugar test per our policy". We told the head nurse that we never wanted to see that girl again, and we didn't. Make sure your husband knows everything you want to decline and that he can say "NO!" if you feel pressured. If you get a lame nurse, ask for a new one. And don't let him out of your site! We even got charged for Hep B, but I KNEW that she didn't have it because she was with one of us at all times.

Thanks Brie. Yeah we had a really crappy nurse too (wonder if it was the same one) but we had no idea back then that we could switch if we wanted to. I was also not wanting them to bathe my baby but I'm not sure if I can decline that or not. Yeah I'm definitely having my husband stay with the baby at all times. I can't believe they charged you for the hep B shot even though she didn't have it. Absurd!

[BRmama]

Okay so with the pku why does it have to be done twice? Can it be done just once? Does it have to be done at the hospital? I would really like to do it at the ped's office, can you alter the results though if the test is done later rather than sooner? Thanks again for the responses. I guess I should start a new thread on this on the BaB forum.

[SundayCrepes]

The reason for 2 tests is that some of the results are better if they've been eating longer. Their bodies have more time to adjust to food intake and you can get a better sense for how their bodies tolerate food. My guess (though I don't know) is they draw the first to screen the babies whose families will not take them in for the second test. At least they can test them for some diseases. They draw the second test to see how the baby tolerates food.

My son was born at a birth center and we went home hours after birth. We already had the expanded genetic test at home and went back to the birth center to have them draw it at whatever age the test required. We did the second test--I can't remember. He was having lots of jaundice problems at that point. I can't remember if we did the next test at the birth center or the lab.

Our daughter was born at a hospital and we took her home at 24 hours. Because we were doing the expanded test the pediatrician wrote an order stating not to do the routine test. Since she was so unexpected (we got the call at 9:42 am about a baby born at 8:22 am. I was nursing her at 6 hours of age) and she born on a Sunday, we had to wait to order her genetic test. I think we had it drawn at the lab. I think we had the second one drawn at the lab as well.

I was surprised at how good the lab was at doing heelsticks. I used to work in the NICU so I know the humane way of doing heelsticks. If they weren't doing it right or were having trouble, I would just take over. When my son had jaundice he had to be hospitalized and had lots of sticks. I was horrified by how those techs on the pediatric unit wanted to do the sticks. My letter of complaint was taken very seriously by the hospital. They should only stick the baby once (some in the hospital wanted to start out with 2 sticks.) However, sometimes the stick just isn't good. If that's the case then a second stick is the most humane way to do it.

I would have the test done at the hospital if I had a really compassionate, competent person doing it. If the staff is icky, tell the pediatrician you want it done in their office or at a lab.

I know it's horrible for your baby to get stuck. However, missing a preventable death or serious brain damage is worse. Here's more information http://www.marchofdimes.com/pnhec/39679_834.asp

[SundayCrepes]

Originally Posted by BRmama

Yeah in your case it was good that they used the hep B vax, in my case they were really pushy with my first one and since I was in the middle of my cesarean still wide opened when they pressured me I had no strength left to fight them.

Hospitals can suck. Says an RN who's worked in several (and won't take my kids to one of those I worked at for a brief time.)

[BRmama]

Hospitals can suck. Says an RN who's worked in several (and won't take my kids to one of those I worked at for a brief time.)

Unfortunately yeah. I mean even if I were pro vax how unethical to ask a woman in the middle of surgery about it. Wait till I'm recovering at least.

Anyway thanks for the link. I'm thinking about doing the expanded genetic testing done, I have to sit down and discuss it with dh and he's out of town on a business trip. Here's a question about it: (sorry for so many questions ) if we were to use this expanded genetic test is it something my dr. has to approve or the pediatrician? Either way I'll be definitely asking them to warm up the foot before they poke him.

[SundayCrepes]

Originally Posted by BRmama

Unfortunately yeah. I mean even if I were pro vax how unethical to ask a woman in the middle of surgery about it. Wait till I'm recovering at least.

Anyway thanks for the link. I'm thinking about doing the expanded genetic testing done, I have to sit down and discuss it with dh and he's out of town on a business trip. Here's a question about it: (sorry for so many questions ) if we were to use this expanded genetic test is it something my dr. has to approve or the pediatrician? Either way I'll be definitely asking them to warm up the foot before they poke him.

Like the baby's liver was going to shrivel up and die if they didn't give the shot right after birth. Give me a friggin' break. Let the baby figure out how to breathe before you inject it with foreign substances.

To answer your question, the pediatrician. It's a test on the baby so the baby's doctor needs to be involved. That said, when we had our son's drawn at the birth center, they mailed it in. The pediatrician wasn't involved. However, you're going through a hospital so you have to do it their way.

Our pediatrician had the results for our daughter so when she ended up having chronic diarrhea (from an amoeba) all she had to do was look at the results and verify she did not have cystic fibrosis.

[BRmama]

To answer your question, the pediatrician. It's a test on the baby so the baby's doctor needs to be involved. That said, when we had our son's drawn at the birth center, they mailed it in. The pediatrician wasn't involved. However, you're going through a hospital so you have to do it their way.

Our pediatrician had the results for our daughter so when she ended up having chronic diarrhea (from an amoeba) all she had to do was look at the results and verify she did not have cystic fibrosis.

Thanks for the info. Yeah I'll be going through the hospital, but I'm going to tell them not to do it right away since I'll be having a cesarean again this time. I want to recover and have my baby nursing already before they do it. Thanks again.

[SundayCrepes]

Originally Posted by BRmama

Thanks for the info. Yeah I'll be going through the hospital, but I'm going to tell them not to do it right away since I'll be having a cesarean again this time. I want to recover and have my baby nursing already before they do it. Thanks again.

Most likely they won't want to do it until close to discharge. They want the baby to have gotten as much milk as possible.

As I recall, when we did the expanded test they actually recommended it be drawn earlier than I expected, like around 48 hours.

You aren't going to try a VBAC?

[BRmama]

Most likely they won't want to do it until close to discharge. They want the baby to have gotten as much milk as possible.

As I recall, when we did the expanded test they actually recommended it be drawn earlier than I expected, like around 48 hours.

You aren't going to try a VBAC?

Good to know.

Well, not to derail much OT but I do need to vent about trying a vbac. I'm sorry if this is long .

I want to try a vbac so much. After much research we just couldn't go with a midwife. My OB is the same one that delivered my son last year when my original dr. wasn't available. Last year I was going to do a natural birth at the hospital. My original dr. knew everything I wanted and was okay with it but my son came early and my dr. was out of town. Well turned out that I abrupted really bad and so had to have emergency c-section. Surgery went well but a few weeks later I had dvt. Had to stop bf so fast forward I don't know if you remember I was often in the bf forum relactating for my son. I got milk but he never took my breast so I dried up. Fast forward again to this pregnancy. When we decided to go with this dr. everything went downhill. He right away wanted me to schedule a cesarean at 39 weeks to prevent what happened last time (after much research and talk with different drs. I found out that no one knows why an abruption happens and it's really rare to occur even for those that it's happened to).

Then he wanted me to be on a heavy dose of heparin (shots) to prevent blood clot. Got a second opinion per his request from a high risk dr. and got tested for blood clotting factors. Everything came out negative so that high risk dr. and I decided that just being on a low dose baby aspirin twice a day would suffice, and after the baby is born start a low dosage of heparin (shots to prevent blood clot). I've been doing that. Well so back to my original dr. he sent me to another high risk dr. who pressured me and then he pressured me into taking this medication. After several times saying no he got frustrated. So recently I lied and said I was taking it. Now I have an appointment to get my blood drawn (they need to check the platelets for osteoporosis among other things) and I'm stressed. The thing I kept telling him what the other dr. and I decided together is that I would be on aspirin for now and after baby is out start the heparin, but no that's not good enough according to him and this other dr that agrees with him.

One other thing is ironically this high risk dr. who agrees with him and has been pressuring me to take this medication said I could have a vbac. My baby right now is on the 80th percentile. They checked my glucose and everything came out okay except one of the results from the test was high so now my dr. wanted me to check my glucose with a glucometer. Have been and all the numbers are in normal range. Seriously I'm so mad I just don't know if at this point I can change providers. So to sum it up I am seriously thinking about an unassisted birth and then getting my baby checked but I don't know if that would be irresponsible yk. I just feel like I have no control whatsoever about my health or that of my baby's but they know better than I do. Also through all of this I'm always told that baby's fine and doing great so...again I've just been feeling mad and frustrated and I'm not sure what I'm going to do at this point. Maybe just cave in I guess. Anyway SundayCrepes thanks for reading this long post. I feel better just writing all this down.