NT scan, insurance coverage, and trisomy FYI

biblionerd

We had a very simple process last pg getting the NT scan done at a different OB. I said I wanted it, they scheduled it, sent me a packet with codes to verify with insurance, and insurance covered it. This test is extremely important to me. This pg I told my new OB that I wanted it and she looked at me like I had 2 heads but said ok. The nurse called to set it up and they needed a diagnosis code. The nurse said I didn't have one so she'd have to talk to the OB and get back to me. Their office is not apparently up to date with ACOG recommendations and also stated that they only suggest this test for advanced maternal age or family history. I said that I was neither of these last pg and that the last OB recommended the NT scan as a routine screening that is more accurate than the quad screen. They basically said the MFM center would not schedule it w/o a diagnosis code and they had none to give. 

So I called the genetic testing center I went to last year and they said that they have very rarely had an insurance NOT cover the test. OOP it is approximately $1500 as well there. The MFM center down the HALL from them has a completely different opinion of the NT scan and only will do it for AMA or history, which is the office my OB uses. The nurse was very honest and blunt and said that it was ridiculous and that it was current ACOG guidelines to allow ANY pregnant woman the opportunity to have this screening as it is the most accurate non-invasive test and that AMA or history do NOT play a factor. I got their insurance codes as well as the MFM center down the hall. They were extremely different for the same test. The place I am going has "built in" diagnosis code of suspected fetal abnormality (or something similar) because that it was they are checking for. I sent both sets of codes to the insurance. Sure enough... first one declined on the basis of no medical necessity. Second one,  approved. 

I called my OB and said I wanted the test scheduled at this particular office and it is covered. If this test is truly important to you and you are not doing it because insurance does not cover it, please look further. These offices are literally right down the hall and insurance would cover one and not the other because of the codes they use. If you want this test, you can call MFM or genetic testing centers yourself and figure this out. Do not just leave it up to your OB, especially in a case like mine where they are in the dark ages. 

 If you were not aware, for the people who do not want this test on the basis of not being AMA or having a medical history, here is some info. It also doesn't matter if you won't terminate, if I knew I was at risk for a child with Trisomy 13 or 18 I would want to prepare myself for my child's death ahead of time. 

From PubMed: 

Trisomy 13- 1 in 10,000 (most cases are an abnormality is sperm or egg and not inherited)- 80% die within the first year

Trisomy 18-  1 in 3,000, not hereditary (trisomy18.org) Half of infants with this condition do not survive beyond the first week of life. Some children have survived to the teenage years, but with serious medical and developmental problems.

Trisomy 21- Down Syndrome-   "The American College of Obstetricians and Gynecologists recommends offering Down syndrome screening tests to all pregnant women, regardless of age."

(mayo clinic) "Most of the time, Down syndrome isn't inherited. It's caused by a mistake in cell division during the development of the egg, sperm or embryo.

Translocation Down syndrome is the only form of the disorder that can be passed from parent to child. However, only about 4 percent of children with Down syndrome have translocation. And only about half of these children inherited it from one of their parents." 

risk increases over age of 35 or with family history.

"About half of children with Down syndrome are born with heart problems, including atrial septal defect, ventricular septal defect, and endocardial cushion defects. Severe heart problems may lead to early death." 

"There is no specific treatment for Down syndrome. A child born with a gastrointestinal blockage may need major surgery immediately after birth. Certain heart defects may also require surgery." 

 

 

MsCat19

Thank you.  I had questions about this and you answered a lot of them in a clear way, I appreciate it.

funkymonkeyohyeahhh

Thanks for sharing all of this information!

I am glad that you were able to get the test covered since it is important to you. I will look more in to it with my insurance and ask more questions. 

BelleWithABlade

Excellent post with good ACCURATE information.  Thank you very much for sharing this.  I will add that the intestinal blockage that is seen with downs is called duodenal atresia.  It happens in about 8-10% of trisomy 21 babies and requires immediate intervention both to prevent aspiration (which can be fatal) and get the baby nutrition, usually in the form of TPN while our surgical site is healing. 

biblionerd

No prob. FWIW, these are the codes my center uses for comparison. 

768017681336416s02658416384702
diagnosis codes: 655.83

655.13 

whiterabbit5

Thank you so much for this post!  So informative!

LilyPotter218

Lurking from (late) March and I just wanted to say thanks for such a well thought out and informative post. We just got our NT results today and I have not understood the response of "we would love our baby no matter what..." Yea, I would too, but I'd also like to be prepared if the baby will have special needs especially if he/she will have them immediately after birth.

I think its selfish not to want to at least try to learn about the baby and if they may need you to learn a few things before birth. We all read up on labor and BF, or the best formula but what if you need to learn about DS?! I get its not diagnostic, but if I was labeled high risk I would learn more and read up on what may be...

mystiandcasey

I just called my OB to find out why the scan wasn't offered to me, if my insurance won't cover it or what is going on....she said something like, "they do something new now, an ultrasound and bloodwork".....???  I thought that is what it was... a high tech ultrasound and bloodwork.  So now I'm waiting on her to call back and tell me what is going on....I have another office in mind to call to check codes/schedule if I don't hear what I want from them.  I am with everyone else, I just want to know so that I can be prepared, I'd never terminate or anything....

biblionerd

mystiandcasey:

I just called my OB to find out why the scan wasn't offered to me, if my insurance won't cover it or what is going on....she said something like, "they do something new now, an ultrasound and bloodwork".....???  I thought that is what it was... a high tech ultrasound and bloodwork.  So now I'm waiting on her to call back and tell me what is going on....I have another office in mind to call to check codes/schedule if I don't hear what I want from them.  I am with everyone else, I just want to know so that I can be prepared, I'd never terminate or anything....

Yep, if wouldn't have known about it from my last OB and the Bump, my OB would never have said anything. Ironically, they hand out these little testing/screening brochures in their "pg packet" that are printed by ACOG that have info about the NT scan, yet they STILL don't recommend it.

TeamCohCoh

Thank you so much for posting this info.  It's very helpful to know what to expect, or not expect from our doctors whom we put so much faith in.  I am glad we can all be educated through each other's experiences!