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Forum: April 2013 Playroom

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  • 9 Post By CrochetingMama
  • 3 Post By Kennydra

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  #1  
March 9th, 2013, 05:17 PM
2XlinkedPHkids
Join Date: Jul 2012
Posts: 820
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When I bug you all about making sure you get a pulse ox done on your newborn.

Consider this: The heel stick that is a standard part of the newborn screening process tests for PKU. PKU affects ONE in 15 to 25 THOUSAND babies.

A pulse oximetry test which measures the amount of oxygen in the babies blood can detect a lot of CHDs and lung problems because they can cause lowered oxygen levels in the blood. Now...guess how many kiddos are born with a CHD every year? March of Dimes says that 35 THOUSAND kids are born each year in the US with a CHD. That's not one IN 35k...That's 35k kids. Yours could easily be one. Mine was.

The pulse ox test is one of the most simple non-invasive tests out there. They have this little bitty strip like a small ace bandage with a red glowing sensor on it. They wrap the strip around the baby's foot. They wait about 30 seconds while the machine reads the oxygen levels in the baby's blood. When its done, they unwrap the strip and its done.

Its. just. that. simple. BUT for some stupid reason..the Pulse Ox test is not a standard part of the newborn screening process in most areas. You may have to request it. Your insurance might even refuse to pay for it for some stupid reason. The hospital may not want to do it because its too much of a pain if your baby 'looks' healthy. Look at the picture of my Monster in my siggie. Does she look like she has a chronic, life-threatening illness that will most likely kill her before she turns 15? PH is considered a terminal illness. She LOOKS perfectly healthy..

Even if your insurance might ***** about paying for it...it won't be that expensive. Then when you weigh paying the costs for the simple test versus the costs of potentially burying your child because of an undetected CHD that could have been fixed if it was detected?? Well, you all are intelligent so...

There we go. I'll step off my soapbox now.

Well...almost...

Last words: I can't think of a single good reason why anyone in the world would not fight to have this test done for their child. Just because there is no history of heart disease/defects or other problems in your family does not mean there is not a chance that your child might have an issue. Lily's PH is 'Idiopathic Pulmonary Arterial Hypertension". Idiopathic means 'unknown cause'. There is no reason, from looking at my family history OR her father's that she should have this disease. But she does. So, there's that.

Okay, I'm done now.
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  #2  
March 9th, 2013, 05:41 PM
Kennydra's Avatar Mega Super Mommy
Join Date: Aug 2008
Location: Ontario, Canada
Posts: 3,100
Definitely worth it and totally harmless to have the pulse ox done. It's the same thing as when we go to the doctor and they put the little glowing thing on your finger, except they do it differently on babies. Totally painless and literally takes seconds. The boys have one done every 3 months at cf clinic and they actually think it's fun now since it makes their finger/toe glow!

The newborn screening is very important too though! They test for Cystic Fibrosis in addition to PKU and many other conditions, that's how we found out DS2 had CF and then went on to have DS1 tested and found out he had it as well since they didn't screen for it here until 2008.

Don't want to threadjack, but just to kind of piggyback on your post rather than make another 1 in 3,600 children born have CF and 1 in 25 people are carriers. DH and I didn't even know what CF was until our boys were found to have it.

Early detection and treatment is so important when it comes to these kinds of diseases! Thanks for posting this momma, I'll definitely be requesting a pulse ox be done on Rosalie. Big hugs to you and Lily!
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  #3  
March 9th, 2013, 05:51 PM
bellasky's Avatar Blessed
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Posts: 1,397
Will definitely be requesting the test. Thank you for the heads up
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  #4  
March 9th, 2013, 07:07 PM
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Thank you ladies!!! It was already on my list of to do's but I'm going to talk to my doc about it Monday too, as a reminder to her.
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  #5  
March 9th, 2013, 07:18 PM
anjawb's Avatar Super Mommy
Join Date: Aug 2012
Location: Western Mass
Posts: 974
It is already written up on my "Birth Day Wishes" thingy the hospital gave me!
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  #6  
March 9th, 2013, 08:17 PM
*Anya*'s Avatar Platinum Supermommy
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Location: Bay Area. CA
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My daughter had it because she was a nicu baby, not sure how we'll go about it this time. I'm guessing the first time the baby goes to the ped we'll inquire about it, thanks for the reminder.
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  #7  
March 9th, 2013, 08:26 PM
2XlinkedPHkids
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Posts: 820
Quote:
Originally Posted by *Anya* View Post
My daughter had it because she was a nicu baby, not sure how we'll go about it this time. I'm guessing the first time the baby goes to the ped we'll inquire about it, thanks for the reminder.
I think they'll be more vigilant with George because of Lily's Dx but I've also already made it clear that if they do not intend to test her, I will buy a pediatric one and test her myself at the hospital. I am NOT leaving that hospital with her until she's been checked out. Even then we have an appointment on the 1st of May with lily's PH specialist and I'm going to bug them to do an EKG on George at that time just to be on the safe side.

They should be able to do it when you go to the Pedi =)
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  #8  
March 9th, 2013, 08:31 PM
*Anya*'s Avatar Platinum Supermommy
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I wonder if I have Penni's cuff, they gave us a lot of her nicu "equipment" as a souvenir lol. We have the blood pressure cuff and some other stuff, I don't remember if that little thing was one of the souvenirs or not.
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  #9  
March 9th, 2013, 09:17 PM
Purple_cat's Avatar Mega Super Mommy
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Posts: 3,206
Thank you for telling about this. I will be sure to have it done while we are still at the hospital.
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  #10  
March 10th, 2013, 07:55 AM
Carnia's Avatar Regular
Join Date: Sep 2010
Location: Georgia, USA
Posts: 51
Thanks for the post. I think sometimes all the things that we have to do/endure during our (and the baby's) hospital stay gets overwhelming so it's good to have reminders so we can write things like this down on a to-do list so we don't forget or have it passed up. Best wishes to Lily and baby George.
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  #11  
March 10th, 2013, 09:55 AM
LeedaRenee's Avatar Mega Super Mommy
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Wow, are hospitals NOT doing this? Mine always did...The babies have one leads, pulse ox, and blood pressures during the transition period. I would feel uncomfortable not having all of that done.
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  #12  
March 10th, 2013, 11:50 AM
ThaiSpice's Avatar Platinum Supermommy
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Location: AR
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Good reminder!
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  #13  
March 10th, 2013, 01:02 PM
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Posts: 408
Thanks for letting us know about this. I don't think it was done for my other two. Will add it to our list of things to make sure we ask about.
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  #14  
March 10th, 2013, 06:11 PM
2XlinkedPHkids
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Quote:
Originally Posted by LeedaRenee View Post
Wow, are hospitals NOT doing this? Mine always did...The babies have one leads, pulse ox, and blood pressures during the transition period. I would feel uncomfortable not having all of that done.
Not all hospitals are. There's not even legislation in the works for all states making it a necessity. If you aren't in one of the states that have made it a requirement then its up to the hospital and such. You have to advocate.
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  #15  
March 10th, 2013, 09:36 PM
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Thanks. I'll definately be asking (insisting) we get it done. Yhanks for the info.
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  #16  
March 11th, 2013, 06:41 AM
plastikmom's Avatar Super Mommy
Join Date: Jun 2012
Location: South carolina
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Thanks for the info. I would have assumed that was part of the newborn assessment, especially since it is such a basic, noninvasive test. Now I will know to ask. Thanks!
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  #17  
March 11th, 2013, 06:52 AM
2XlinkedPHkids
Join Date: Jul 2012
Posts: 820
the link that I've listed below is a CCHD screening map. It lets you know in what states the pulse ox test is a requirement, which states are 'pilot projects' for it' (this means that, at least in one case, they're only testing 25 percent of newborns), where legislation has been introduced (but is NOT active yet) and which states have legislation enacted (but that doesn't necessarily mean its wide spread in that state yet).

CCHD Screening Map | Updated 2/28/2013

FYI: the only states where it is a required add-on to the NBS are: Pennsylvania, Delaware, and Kentucky.
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