Fetal Echocardiogram- How to ask for one?

wrightpalomo · April 2014

Hi ladies! I was talking to a friend of mine who has a 3 month old who needs a heart transplant and she strongly encouraged me to have a fetal echocardiogram done despite the fact that I don't have any risk factors that would trigger my doctor to prescribe one. I would normally write this off as someone being overly concerned because of her own experience but she is not the type to be an alarmist. She also cited some troubling stats on congenital heart disease.

After talking it over with my hubbs and doing some research I really want to get one done. To me, the benefits of knowing really justify having the extra test done. My OB has been very obliging and understanding with me thus far and I'm hopeful she will be supportive of me on this one. I have an appointment with her on Friday and I want to ask her for a referral for the fetal echocardiogram. Have any of you asked your OB for an "elective" (for lack of a better term) fetal echocardiogram or other such procedure? I imagine my insurance won't cover it unless there are "risk factors" or it is deemed "medically necessary"-- any idea on what this will cost out of pocket?

MrsLaLaBug · April 2014

Haven't asked for that so no advice. But I'd prob def check to see if it's covered first!

hizah05 · April 2014

To be quite honest, I know you say your friend isn't an alarmist but it still sounds that way. Your baby's heart is looked at during A/S and should any issues arise I'd imagine they would follow up with more extensive tests.

If it's covered by your insurance and it gives you peace of mind, go for it. But to me it seems like a strange thing to ask for with no risk factors or indications anything could be wrong. I'd just bring up your concerns with your doctor and see what's suggested. That's why she's there.

And don't research too much online about heart defects! You'll go crazy no matter what!

portentosa · April 2014

I agree with @hizah05‌ ‌

The doctors don't mess around with heart issues before or after baby is born. They take really good looks during the a/s and will call you back if they feel they need to. Plus they will do a thorough once over when baby is born and again before baby leaves the hospital. DS was given an echocardiogram before we left because the OB on call that did his exit checkup wasn't 100% sure about something he may have heard. DS was cleared of any issues and we got to go home.

They will order you one if they deem necessary, don't worry.

jg1011 · April 2014

I think you are going to make yourself crazy! But, if it's covered and your OB agrees... Go for it.

Just know that if on doesn't agree all is likely fine!

wrightpalomo · April 2014

Thanks for the feedback ladies. I know the A/S looks at the heart, we even got to watch the blood flow in and out of the heart and down to the kidneys. Everything looked fine at the A/S and the doctor was really pleased with what she saw. However, my friend's baby passed her A/S with flying colors as well. I'm also not super-freaked out/panicking over CHD, it just seems like a valid concern that I'd like to have further investigated.

I feel like just because something isn't common practice doesn't mean it's not necessary. Think about extended rear-facing car seat use-- not common practice or even legally required, but it is something that I know many of us will (or do) practice. I think, personally, I'll be more comfortable getting the test. I will talk to my doc on Friday and see what she thinks about my concerns.

JustCricket · April 2014

I would focus more on the test they do after birth. They can do the pulse ox test immediately. I know in some states its mando, in others not. So theres that you can ask about that won't be as expensive as the test you want. I'm not even sure if they'll do the EC with out risk factors. but I don't know I've never asked.

edit- words

Flowerchica · April 2014

Deleted the duplicate post...

Flowerchica · April 2014

Let me ask this - would your friend having the test done have changed the outcome? Does she know for sure that the test would have revealed an issue?

JulyMomma2U2 · April 2014

I think it's unlikely they will do such an extensive test without any cause.. But that's just my opinion. Our a/s was done through MFM... They are extremely thorough... With both my boys I actually had to go back for additional heart images just because they weren't satisfied with the clarity... I am curious., these stats your saying are alarming.. How many of those had extensive imaging done and these issues were missed? I mean, I'm sure it can happen... But I just don't see it as a normal thing that slips through undetected often.. Again, I could be wrong... I hear you on the ERf thing... Once you know better it's impossible to go back... But, I think this is sort of taking it to an extreme if there are absolutely no red flags or indications there could be an issue... With that said, I'm very sorry for your friend... I can't imagine.

GlitterMuffin914 · April 2014

Doctors seem to be pretty thorough with their anatomy scans when checking baby's heart and everything connected to it. I know you said your friend "passed with flying colors" but I'm not really sure what an echocardiogram would pick up and tell you at this point that the deep imaging they do at the anatomy scan would not make apparent. I think at this point in development, if there is anything wrong heart-wise, they're going to be able to see it. It is possible that the issues your friend's baby is having developed later on or not noticeable until birth, and the a/s (or EC, even) would not have picked them up anyway.

If it will make you feel a lot more at ease, I guess there's no harm in asking for it, but you might want to look at how much you'll be charged for it as an elective procedure vs. something a doctor orders.

kayemgi · April 2014

I actually had a fetal echo at 16 weeks because of the results of our NT scan at 12 weeks. I have to have another at 22 weeks because they felt the valves weren't developed enough to say 100% that nothing was wrong (for the record, they did say they felt 98% nothing was wrong). Just wanted to point out that a fetal echo does go more in depth than an anatomy scan, or else they wouldn't be making me do it. However, I agree with the other ladies. If you've had no markers and your doctor isn't worried at all, I wouldn't worry either, and I wouldn't opt for a fetal echo if my doctor wasn't insisting that I have one (two now).

Ceridwen21 · April 2014

Flowerchica said:

Let me ask this - would your friend having the test done have changed the outcome? Does she know for sure that the test would have revealed an issue?

My questions exactly.

emmylu30 · April 2014

JustCricket said:

I would focus more on the test they do after birth. They can do the pulse ox test immediately. I know in some states its mando, in others not. So theres that you can ask about that won't be as expensive as the test you want. I'm not even sure if they'll do the EC with out risk factors. but I don't know I've never asked.

edit- words

I second this. Our best friend's son has Truncus Arteriosus which is a CHD. My friend recommends that ALL pregnant mothers request a pulse ox test before leaving the hospital. This can detect many CHD and is painless and relatively cheap. It would have saved them months before detecting his heart defect.

Edit to remove name.

wrightpalomo · April 2014

Thanks again ladies!

@flowerchica and @ceridwen21 having the echocardiogram would not have changed her outcome with her specific heart defect- she would still need the transplant. That said, her heart defect is really rare compared to some of the more common defects and usually doesn't manifest or show symptoms until much later (5-8 years old). But, knowing this family has prompted me to do more research and be more aware of CHD. My friend has also become much more educated on CHD and the risks now that she is a mother of a child with CHD.

Having a fetal echocardiogram will give more insight into how the heart is developing and could detect heart defects that would make vaginal birth unsafe for the baby. That would be the benefit to me. I don't really see any harm in asking for the test- as it is non-invasive. I also want to say that I'm not "worried" about this test. I just want to have the best information available leading up to my delivery.

What I was looking for in posting this was just some advice on self-advocacy in asking for a test that isn't routine. I'm very set on asking for the test and I just wanted some tips on the best way to ask for what I want.

Squiddly · April 2014

I won't repeat what others have. As far as how to ask for it, I would just come right out and tell the doctor about your concerns and request a referral. She will likely remind you that it's not going to be covered by insurance because it's technically elective, but hopefully she will talk to you about it. I would have no qualms about asking my doctor if I were in your position.

JustCricket · April 2014

just to play devil's advocate....

I have to drive 2 hours for my a/s with the MFM today. I couldn't get in the office closer until mid May. I'd be pissed if I found out it was because someone wanted a more indepth scan, not because the doctor wants to check something out that could be an issue. Wouldn't you rather the time and resources going to a mom who actually has these markers and indications that there is something wrong with their baby's heart??? Just something to think about.

hizah05 · April 2014

JustCricket said:
just to play devil's advocate....

I have to drive 2 hours for my a/s with the MFM today. I couldn't get in the office closer until mid May. I'd be pissed if I found out it was because someone wanted a more indepth scan, not because the doctor wants to check something out that could be an issue. Wouldn't you rather the time and resources going to a mom who actually has these markers and indications that there is something wrong with their baby's heart??? Just something to think about.

Isn't that why elective 3D/4D ultrasound places exist? I'm surprised they wouldn't bump someone else to get you in sooner if there's a concern. Because I've never asked for anything elective I'm not sure how that works. You bring up a good point. I wonder how they handle scheduling things like this when there's a need vs want situation. Interesting. OP, update us on what your doctor thinks when you ask.

JustCricket · April 2014

hizah05 said:

just to play devil's advocate....

I have to drive 2 hours for my a/s with the MFM today. I couldn't get in the office closer until mid May. I'd be pissed if I found out it was because someone wanted a more indepth scan, not because the doctor wants to check something out that could be an issue. Wouldn't you rather the time and resources going to a mom who actually has these markers and indications that there is something wrong with their baby's heart??? Just something to think about.
Isn't that why elective 3D/4D ultrasound places exist? I'm surprised they wouldn't bump someone else to get you in sooner if there's a concern. Because I've never asked for anything elective I'm not sure how that works. You bring up a good point. I wonder how they handle scheduling things like this when there's a need vs want situation. Interesting. OP, update us on what your doctor thinks when you ask.

well, the above isn't about going to an elective u/s place... it's a fetal echo. I mean I do live in a less populated area so there aren't many MFM options. But I'm assuming if you want to get a referral for one, like the op is saying, you'd end up going to a MFM. And hey if someone is paying money and not dealing with insurance, who's to say that the doctor's office won't go with them first? I mean I don't think they do that... but still food for thought.

hizah05 · April 2014

JustCricket said:

hizah05 said:

JustCricket said:
just to play devil's advocate....

I have to drive 2 hours for my a/s with the MFM today. I couldn't get in the office closer until mid May. I'd be pissed if I found out it was because someone wanted a more indepth scan, not because the doctor wants to check something out that could be an issue. Wouldn't you rather the time and resources going to a mom who actually has these markers and indications that there is something wrong with their baby's heart??? Just something to think about.
Isn't that why elective 3D/4D ultrasound places exist? I'm surprised they wouldn't bump someone else to get you in sooner if there's a concern. Because I've never asked for anything elective I'm not sure how that works. You bring up a good point. I wonder how they handle scheduling things like this when there's a need vs want situation. Interesting. OP, update us on what your doctor thinks when you ask.

well, the above isn't about going to an elective u/s place... it's a fetal echo. I mean I do live in a less populated area so there aren't many MFM options. But I'm assuming if you want to get a referral for one, like the op is saying, you'd end up going to a MFM. And hey if someone is paying money and not dealing with insurance, who's to say that the doctor's office won't go with them first? I mean I don't think they do that... but still food for thought.

Oh yeah, I know hers is a fetal echo but until you posted I hadn't thought about the request for any elective procedure taking away an appointment for someone who truly needs it. Although I'm sure for emergencies or something serious they reserve spots.

kaileemariep · April 2014

A friend of mine her son had to have open heart surgery a week after he was born. His heart looked fine at the anatomy scan as well. He came out looking so healthy and we'll and they were going to send him home. Right before they were going to release him a nurse caught a heart murmur and usually those are not a cause for alarm but something told her to take a better look. Sure enough he had a serious issue going on. If they would have sent him home he would have died that night. I do not think you are bring overly cautious. I think it's a good idea to be 100 percent sure:)

kaileemariep · April 2014

Sorry for the auto correct!

JustCricket · April 2014

kaileemariep said:

A friend of mine her son had to have open heart surgery a week after he was born. His heart looked fine at the anatomy scan as well. He came out looking so healthy and we'll and they were going to send him home. Right before they were going to release him a nurse caught a heart murmur and usually those are not a cause for alarm but something told her to take a better look. Sure enough he had a serious issue going on. If they would have sent him home he would have died that night. I do not think you are bring overly cautious. I think it's a good idea to be 100 percent sure:)

this is why pulse ox's are great.

eta- it doesn't say what is wrong exactly, but will let them know if there is some sort of possible issue with the heart and then you can get further testing then. and get the testing done early.

wrightpalomo · April 2014

@JustCricket I'm sorry to hear that you have to drive so far for your a/s and I totally get your issue with elective tests consuming limited resources. However, I don't believe this argument applies to me. While for me this test is technically "elective" I still believe it to be valuable and IMO, necessary. This is not some US for funzies to get a good Facebook post or even to determine the sex of the baby. I will not allow an insurance company tell me what tests and treatments are best for my family- I feel that decision is up to my doctor, my husband, and myself. If the OB believes the test is outrageous or wholly unnecessary I will take that into serious consideration before deciding wether or not to go forward. Secondly, I live in San Francisco, a city with no shortage of OB, ultrasound, and medical resources so I don't see my appointment making too big of a dent in available appointments for others with apparent markers and indicators of CHD.

ETA: spelling

BethanyAnn27 · April 2014

I am just going to focus on answering your question (about the best way to advocate for yourself). You have obviously done research have a personal experience with this. Present your care provider with these facts and be clear about what you want to happen. Advocacy is about opening channels of communication. Be short, sweet, and direct about what you want and why. If you don't get an answer you are comfortable with, don't give up because at the end of the day YOU need to feel ok about this. And, if you don't get an answer you are comfortable with, it is ok to say that to your care provider. Just be open, honest, and respectful and you will (hopefully) get the same treatment in return. Remember that no one can read minds so unless you say something, you cannot assume the other person will know how you are feeling. Good luck!

bumpuser10199668 · April 2014

mamakate12345 said:

So, my 11 year old son had to have open heart surgery at age 6 for a congenital heart defect that we didn't know about until he was 4. My OB offered us AMA for a fetal echo with this LO. (my other 3 children have normal hearts and we didnt do a fetal echo because we didnt know about DS when they were in utero). After actually scheduling the echo, I cancelled. Call me crazy, but I turn down every single diagnostic screening/high risk test offered. I'd actually rather not know. But the chances of a fetal heart defect are slim, even for me. For you, the testing seems very unecessary.

The good news for OP is that now THIS will be the focus instead of her original question....

mrsdanielleM2010 · April 2014

mamakate12345 said:

So, my 11 year old son had to have open heart surgery at age 6 for a congenital heart defect that we didn't know about until he was 4. My OB offered us AMA for a fetal echo with this LO. (my other 3 children have normal hearts and we didnt do a fetal echo because we didnt know about DS when they were in utero). After actually scheduling the echo, I cancelled. Call me crazy, but I turn down every single diagnostic screening/high risk test offered. I'd actually rather not know. But the chances of a fetal heart defect are slim, even for me. For you, the testing seems very unecessary.

So I assume you're delivering at a top rated hospital with a top level NICU just in case your LO has a heart issue at birth, right?

bumpuser10199668 · April 2014

mamakate12345 said:

mrsdanielleM2010 said:

mamakate12345 said:

So, my 11 year old son had to have open heart surgery at age 6 for a congenital heart defect that we didn't know about until he was 4. My OB offered us AMA for a fetal echo with this LO. (my other 3 children have normal hearts and we didnt do a fetal echo because we didnt know about DS when they were in utero). After actually scheduling the echo, I cancelled. Call me crazy, but I turn down every single diagnostic screening/high risk test offered. I'd actually rather not know. But the chances of a fetal heart defect are slim, even for me. For you, the testing seems very unecessary.

So I assume you're delivering at a top rated hospital with a top level NICU just in case your LO has a heart issue at birth, right?

The hospital we deliver at does. But even if a baby is born with a congenital heart defect, the vast majority of heart defects do not need medical intervention at time of birth. Many don't even ever require open heart surgery.

So, no biggie?

wrightpalomo · April 2014

@carmalarm you're the best. I don't even know what to say to @mamakate12345 because obviously we have VERY different points of view on this and neither of us are interested in changing our minds.

wrightpalomo · April 2014

Aaand I finally figured out why her name sticks out in my head. Thanks but no thanks, lady.

MrsLaLaBug · April 2014

A pediatric cardiologist has just entered the building.

mrsdanielleM2010 · April 2014

@mrslalabug you are officially my choice for woman crush wednesday.

MrsLaLaBug · April 2014

@mrsdanielleM2010‌ well thank ya kindly, ma'am.

JustCricket · April 2014

mamakate12345 said:

Not claiming to be a doctor. However, given my son's history, I've spent many hours with many of them. And if an OB or cardiologist doesn't recommend a fetal echo, why should women on a message board encourage someone to advocate for one? If the defect ran in a family, there is reason for concern. But when someday you hear about a kid your son's age getting brain cancer, are you going to advocate for an mri for your healthy son just because you are scared? It's silly.i

I think this is a great point. I'm all for asking your doc about it.. (I'm sorry if I came across as not for asking about it and being an advocate for yourself) but if he/she doesn't suggest doing it, I really don't think you should do it just because. and just because you're in an are with lots of hospitals and doctors around.. doesn't mean you're not complicating the schedule for someone else who may need it (it may not be urgent) for an elective procedure YOU want.

edit- words

ETA- I'm also sorry if I came across as saying the test is pointless, because I don't think is the case either. I just don't think it's a good idea to get a test because you think you need it.

bumpuser10199668 · May 2014

mamakate12345 said:

Not claiming to be a doctor. However, given my son's history, I've spent many hours with many of them. And if an OB or cardiologist doesn't recommend a fetal echo, why should women on a message board encourage someone to advocate for one? If the defect ran in a family, there is reason for concern. But when someday you hear about a kid your son's age getting brain cancer, are you going to advocate for an mri for your healthy son just because you are scared? It's silly.

I agree here, but I also think it is important to remember the echo isn't a pointless test, and I would definitely encourage someone to ask if they have concerns, be it because of family history or a close friend that has caused you alarm as in the OP. She may not have any genetic markers for it, but if it is causing you anxiety then you should ask your doctor. Period. Now, if she tells you that she does not believe it is necessary because XYZ then you need to TRY to take that as it is. But anxiety is a bitch, so I see both sides.

teralane · May 2014

Have you been asked to do any genetic testing? You might be able to talk to your OB about doing something like that, as they do check for down's syndrom,etc. It was offered to me, and I accepted for a few reasons, one being my age (35 at the time) and my SO had a son who passed away from a heart defect. I can understand why you would want to have one, so just ask your OB and think of your options.

wrightpalomo · May 2014

First off, I can't believe how many people are seriously offended by me asking for an extra test that I am willing to pay for with my own money if I need to.

Secondly, @grace0609 I'm not claiming to be "extra special", nor do I think that I'm the only person who needs this test. I never said that others shouldn't self-advocate to have the same done. That seems to be more in line with your perspective. Further, since when is talking to my OB about my concerns "bugging" her? I specifically selected my OB because she has great communication and is always willing to spend our appointments discussing any concerns I have or giving me a detailed explanation if I ask for one. It's pretty much her job to respond to health concerns of expecting mothers so I really don't get your beef with me asking her opinion. If you had read the whole thread you would have seen that I plan on considering my OB's opinion very seriously before making a decision on going forward with this test.

@teralane yes, I have had genetic screening done and I found out that I am actually a carrier of a syndrome that causes CHD (among many other issues). My husband is not a carrier so while the risk to our baby is not super high (1 in 4 as it would be if he were a carrier as well) it is higher than the general population (general population risk for this syndrome is 1 in 30,0000 and my baby's risk is currently estimated at 1 in 7,000). This risk was not enough for my OB to automatically recommend a fetal echocardiogram. Now, I don't think that a 1 in 7,000 is a huge risk but that combined with the information I read about CHD (from the American Heart Association, btw), my friend's experience, my sister's experience (her first baby was born with a heart defect as well), etc. has prompted me to want to ask more questions and possibly (after consulting with my OB tomorrow) press for having a fetal echocardiogram.

bumpuser10199668 · May 2014

In your very first post you say you have NO RISK FACTORS, this is why everyone is responding this way. You can't just say you have no risk factors, respond to people for 3 days, and then come up and claim to have risk factors.

wrightpalomo · May 2014

wrightpalomo said: Hi ladies! I was talking to a friend of mine who has a 3 month old who needs a heart transplant and she strongly encouraged me to have a fetal echocardiogram done despite the fact that I don't have any risk factors that would trigger my doctor to prescribe one. I would normally write this off as someone being overly concerned because of her own experience but she is not the type to be an alarmist. She also cited some troubling stats on congenital heart disease.
After talking it over with my hubbs and doing some research I really want to get one done. To me, the benefits of knowing really justify having the extra test done. My OB has been very obliging and understanding with me thus far and I'm hopeful she will be supportive of me on this one. I have an appointment with her on Friday and I want to ask her for a referral for the fetal echocardiogram. Have any of you asked your OB for an "elective" (for lack of a better term) fetal echocardiogram or other such procedure? I imagine my insurance won't cover it unless there are "risk factors" or it is deemed "medically necessary"-- any idea on what this will cost out of pocket?

-----ETA Quote fail-----

@carmalarm please see my original quote. This 1 in 7k number wasn't enough to prompt my OB to request additional testing. I really didn't even consider CHD to be an issue for me until I was talking to my friend who urged me to ask for the test- hence the focus on that instead of the 1 in 7k risk.

I apologize for this looking so misleading. The goal of the original post wasn't to find out "Should I ask for this test?" as it was "How do I ask for what I want?". I didn't think people would get so up in arms about me just asking for a test. Since it didn't cross my mind that people would disagree with me talking to my doctor about getting additional testing I didn't think about making a strong case to you all for me to have the test done. If I'd thought I'd get so slammed for this I really wouldn't have asked here as it has proved to a pretty divisive topic. Please note that I'm not saying "y'all are meanies" I'm just honestly surprised by the responses to this post.

wrightpalomo · May 2014

Grace0609 said:

While for me this test is technically "elective" I still believe it to be valuable and IMO, necessary. This is not some US for funzies to get a good Facebook post or even to determine the sex of the baby. I will not allow an insurance company tell me what tests and treatments are best for my family- I feel that decision is up to my doctor, my husband, and myself. If the OB believes the test is outrageous or wholly unnecessary I will take that into serious consideration before deciding wether or not to go forward.

ETA: spelling
I read the whole thread. Carefully. This is the part where you basically say you know better than your OB and the pediatric cardiologists and perinatologists who make up the guidelines for screening for CHD. Their goal is to catch as many serious CHD cases as early as possible without wasting resources, health care dollars and driving up insurance costs for everyone else. Your risk of having a child with CHD is not raised bc of your friend. However, if your sisters kid had serious CHD then it might be and you should discuss THAT with your OB. That was not at all mentioned in your OP. And. You can't determine how people answer your post if you say silly things.

Re: bold #1 and #2:

That was actually the part where I said that I don't want an insurance company to determine the care or testing I receive. It's also the part where I say that my child's care will determined by my OB, my husband, and myself. (Note that "OB" was listed first, not just because it is grammatically correct but also because she is a medical professional and her opinion is very important to me in making decisions.)

Re: bold #3:

I asked a specific question in my post-- basically: How do I self-advocate? I know that everyone has a different opinion and that's why I posted- to get a bunch of different opinions on the question I asked. Yes, you (and anyone else on here) are free to tell me you think I'm wrong and to tell me that I'm ridiculous. Perhaps, you would have found my question less offensive if I left out the name of the test I wanted and the reason I was thinking about asking all together (since this seems to have touched a nerve and I'm not usually one to stir up shit)... would it have been better to ask "How do I ask my OB for a test that isn't routine?" or "Does anyone have any tips on self-advocacy when dealing with doctors and insurance companies?" Which question would you have preferred to read?

ETA: FFS I wasn't irritated until now.

wrightpalomo · May 2014

@grace0609 Thanks for giving me permission! That was totally the point!

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