IL sent me a letter about newborn screening?

[wrappedupmama]

My son is now 3 months old and I just got a letter from the state of IL. It says how important the newborn screening is, that they test all babies, they noticed I didn't birth in the hospital and have not done the screening. It says I should call the doctor and set up to get it done and should send them back the form they sent me. The form asks for date and place the screening was done, my and my son's name, and the doctors name and number so they can contact the doctor with results.

I'm not really wanting to get him tested, and seeing as he's 3 months old and growing and developing well I see no need. The doc that has done all his well checks never even brought up the screening so I thought I just wouldn't have to deal with it until I got this letter. I told the doc it was a home birth, but not that I UCed. Anyone else deal with this? What would you do? Ignore it, call the number and tell them you won't be doing the testing, get the doc to write up a waiver saying I decline and send it in, something else? Is it truly "required" to do the screening in IL? Anyone else in IL not have their baby screened? All suggestions and past experience welcome.

[lunita1]

FWIW, normal growth and development at 3 months doesn't exclude all of the disorders that the newborn screening tests for. PKU, for instance, is rarely detected before 6 months without the testing.

I'll let someone else answer your questions about waivers.

[gossamerwindweb]

What I know is that my son's Dr. said that 4 weeks was "on the edge" of being able to have the screening be accurate at ALL. So at 3 months it seems just ridiculous to do it. Also, we decided not to do it. But we live in CO and the Dr. did pressure us a bit. We just told her we had done our research and didn't want to do it. She wrote it in our chart. Good luck!

[flapjack]

Have you looked into the conditions that the test screens for? That might be a good place to start.

[wrappedupmama]

I have looked into a lot of what is being tested for actually. I did that with my DD. It's just been awhile and many of the details are fuzzy at this point I wasn't completely for the test with her either, but being my first kid and in the hospital where they try to intimidate you into compliance she got it done anyway. One of the many appealing aspects of UC is not having to fight for routine care that you don't want and simply seeking out the care you do want.

gossamerwindweb thanks for your experience with talking about the testing with your doctor. Anyone else have experience?

[lia_joy]

I did have the screenings done, but haven't been doing well-baby or vax and I got what sounds like a similar letter from the state of WI encouraging vaccination, and one about medical assistance if i needed it. i ignored it and haven't heard anything else. I think with the screenings, though (at least in WI) you may have to sign a waiver saying you don't want them.... I might call to find that out if I were in your situation. sorry, that's probably not alot of help.

-lia

[zoebird]

i would talk to the doctor about it at the next well baby visit.

i actually wanted to get hawk screened, but was unable to. of course, we UCed, but then i called the health dept to get the proper collection paper for the test, but they said that the hospital will do it. i said that i didn't have a hospital, that i had a homebirth. then they said that my doctor can get the papers.

my doctor asked me to contact the local midwives, who never returned my call (no biggie, it was the holiday weekend/week). so, i put it back on my doctor, who called the health dept, and then he was told to call the specific lab, and they were told that they couldn't give him the right papers, that he had to get them from the health dept. the health dept then said that i had to fill out a form to get them, but then couldn't figure out what form it was, and kept sending me the "newborn hearing screening test" which was not what we wanted.

so we ended up just not doing it. so annoying, though.

[wrappedupmama]

Thanks for sharing more experiences. I called the doctors office and they said we can discuss it and order up the tests if needed at my son's 4 month appointment that is schedule just before xmas. I'll post back and let everyone know how it goes. If anyone else has more experiences feel free to keep sharing.

[Kidzaplenty]

Each state has different requirements regarding exemptions. If you truly want to exempt your baby from this test, you will need to search your state for said exemptions.

In my state, I just googled "Newborn Screening exemption" and my state.

[WindyCityMom]

I'm in IL as well.. you're only exempt if you provide religious documentation for it.. found that on vaclib.org while researching for my kids, don't have the exact link though.

[AbbieB]

I'm wondering why you have to do anything at all? What is the consequence for not doing the screening?

It seems it's a bit different than vax status. It's not like a child would be excluded from school or asked for proof of screening or a waiver, KWIM?

Is it something that is needed for a birth certificate?

I would ignore it.

[Juvysen]

I didn't UC but my son got a false positive on his test (state of NY requires it, I believe) that was done at birth, so we had to have it done again - he was 2 or 3 months old at the time? I was told to go to the maternity ward of the hospital and they just did it... it was quick and easy, I didn't even take Ds out of the sling - he slept through the entire poke on the foot and it didn't take much squeezing (like it did when he was a newborn) to get the drops of blood they needed for it. For what that's worth.

[Kidzaplenty]

Originally Posted by AbbieB

I'm wondering why you have to do anything at all? What is the consequence for not doing the screening?

It seems it's a bit different than vax status. It's not like a child would be excluded from school or asked for proof of screening or a waiver, KWIM?

Is it something that is needed for a birth certificate?

I would ignore it.

I don't know about IL and how far they would push it, but I know someone that lived in IA (I believe) and the state actually took her to court and eventually removed her baby for three weeks until they did the test and it came back normal.

[wrappedupmama]

Kidzaplenty, yes exactly. I was afraid of something like the state freaking out about negligence if I didn't respond in some way or another. I'd prefer not to write a religious exemption letter if I can. We'll see what the doctor says at his 4 month appointment. If they are going to either have me write the letter or do the test, I'll just test under my terms. It will be done while breastfeeding, vein blood, no heal sticking (that's just mean), and no sticky bandaids so I don't have to take one off later. I don't really want it done, but I'd rather do that, then have the religious exemption that can come back to bite me in the butt later. For example, I'm still debating about giving my daughter the rubella shot when she is a teenager, etc. I don't want this letter on record saying I don't do any of that, in case I change my mind down the road.

[onelilguysmommy]

Originally Posted by AbbieB

I'm wondering why you have to do anything at all? What is the consequence for not doing the screening?

It seems it's a bit different than vax status. It's not like a child would be excluded from school or asked for proof of screening or a waiver, KWIM?

Is it something that is needed for a birth certificate?

I would ignore it.

Yeah it is weird. I don't see what you'd need exempted from since it wasn't offered where they were born. You need exemptions when you want to take your baby home without doing the state mandated stuff that they want to do but if the baby wasn't taken from a medical person who needs to do these things then what is the deal?

[skyblufig]

We're in Chicago and uc'd with dd in 2007. We got that same letter in the mail and when I asked our family practice doc about it, he said not to bother at that point because it really needs to be done somewhere between 2 days and 2 weeks for the screening to be most accurate (dd was about 4 months old at that point). So we ignored the letter completely and never heard anything else from them. I wouldn't worry about it.

For what it's worth, here's a link to the IL screening page/faq's (under "Newborn Screening", halfway down the page): http://www.idph.state.il.us/HealthWe...netics.htm#nfs

[Casha'sMommy]

Speaking from experience, please do the Universal Newborn Hearing Screen.
Here's a link to the IL UNHS brochure http://www.infanthearing.org/statema...About(eng).pdf

We have no family history of hearing loss and our youngest dd (now 3.5yo) was born with a profound and bilateral hearing loss.
I think you'll find that hearing loss is more common than one might think.

[Kidzaplenty]

Originally Posted by Casha'sMommy

Speaking from experience, please do the Universal Newborn Hearing Screen.
Here's a link to the IL UNHS brochure http://www.infanthearing.org/statema...About(eng).pdf

We have no family history of hearing loss and our youngest dd (now 3.5yo) was born with a profound and bilateral hearing loss.
I think you'll find that hearing loss is more common than one might think.

I think the OP was talking about the PKU/blood screening, not the hearing screening. But, maybe I missed something. Not sure if they did the hearing screening or not.