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Scary

post #1 of 18
Thread Starter 
So today, at work, I get this random call. It's the referral office on base, and she says, "Mrs.N, I want you to know that your referral has been approved for specialist ob care. Please call Dr.T to schedule your appointment." I'm like, what referral? What are you talking about? She won't tell me ANYTHING.

So I google this doctor, and he's an ultrasound specialist in Pensacola, at the high risk clinic there. So I'm like, WTF?

Then I call the appointment line to leave a message with my MW (yes, military policy, I can't actually call her directly). She immediately calls me back, and says, "I'm sorry, but there's an abnormality with your ultrasound. I don't want to discuss it over the phone. I'll wait here if you can come over now."

Again, WTF. My u/s was Monday, and although the tech technically can't say anything diagnostic, everything looked great, measured currently for dates, etc. So I'm driving to the medical office and I am pretty much hysterical at this point.

Then I get to the clinic, and am *escorted* to her office. I'm thinking, wow, this must be really bad. I'm crying at this point.

Then my MW sits me down and tells me that the "abnormality" is that there is "shadowing"/"calcification" in some of the baby's heart tissue. The heart is formed correctly, but there's this dark area. There are no other abnormalities. She said that, "We're seeing a lot of these lately. Ultrasounds have gotten really good, and we're not sure if this is a true issue or just a phase of development we're just starting to identify." And apparently I'm going to have a Level 2 u/s with the specialist, and have it monitored, and hopefully it will go away.

I need to do more research, but she was confident that we were "just being careful." She also said it was fairly common. Do anyone have any experience with this???

I'm so mad I went through all that for something that was later deemed "minor." Way to give me a heart attack, lady. I was totally thinking fatal defect, trisomy, etc.
post #2 of 18
Oh gosh, I'm so sorry they put you through that roller coaster! How horrible. That will no doubt take some time to come down from, emotionally. I'm glad it doesn't sound like anything serious. I hope it's not too much longer until it "goes away" and you can proceed as normal without any more worry.
post #3 of 18
Who are you seeing in P-cola? That's where my heart baby was born! We drove from Panama City to P-cola to do all prenatals and deliver at Sacred Heart.
post #4 of 18
Thread Starter 
Quote:
Originally Posted by starshine1001 View Post
Who are you seeing in P-cola? That's where my heart baby was born! We drove from Panama City to P-cola to do all prenatals and deliver at Sacred Heart.
I'm going to be seeing Dr. Thorp.

I'm hoping now that they'll just let me deliver at Pensacola instead of on base, because they are a lot more natural-friendly. They actually post a birth plan outline online for their patients to fill out, and I've heard good things.
post #5 of 18
that would be so scary.
post #6 of 18
my son, due early nov. was found to have a shadow on his heart at my 18 week u/s. I was just hysterical about it, and was offered the quad screen. I did the blood test, and my numbers for genetic issues were 1:20000 and nueral tube defects 1:58000. This combined with an isolated echogenic focus of the heart means that I am actually at no greater risk for a baby with any 'issues'. It was scary, but once I started asking questions and relaxed I was able to find that they are SO SO common. My midwives (who are awesome) had me do a telephone consult with a specialist and a genetic counsellor who said that there is no reason for a 2nd u/s or any further follow up. In fact, the u/s tech, the councelllor, the specialist and my midwives said that they wish they didnt even have to tell moms about an isolated soft marker such as this one because they are almost always unnessecary stress. My midwife (practicing 35+years) and my backup (10 yrs) both said they have never seen an isolated heart shadow turn out to be a problem.

Keep your head up, try not to worry too much
post #7 of 18
Thread Starter 
Quote:
Originally Posted by mom_2_3_boys View Post
my son, due early nov. was found to have a shadow on his heart at my 18 week u/s. I was just hysterical about it, and was offered the quad screen. I did the blood test, and my numbers for genetic issues were 1:20000 and nueral tube defects 1:58000. This combined with an isolated echogenic focus of the heart means that I am actually at no greater risk for a baby with any 'issues'. It was scary, but once I started asking questions and relaxed I was able to find that they are SO SO common. My midwives (who are awesome) had me do a telephone consult with a specialist and a genetic counsellor who said that there is no reason for a 2nd u/s or any further follow up. In fact, the u/s tech, the councelllor, the specialist and my midwives said that they wish they didnt even have to tell moms about an isolated soft marker such as this one because they are almost always unnessecary stress. My midwife (practicing 35+years) and my backup (10 yrs) both said they have never seen an isolated heart shadow turn out to be a problem.

Keep your head up, try not to worry too much
Thank you. That makes me feel a lot better.
We decline all genetic testing, so I didn't do the quad screen, etc. However, I'm not super worried because that was the *only* soft marker. And I've been researching like crazy, and like you said, it seems really common, and the vast majority turn out totally normal.
post #8 of 18
I am also one who has never had genetic testing until I freaked about this silly soft marker, and I went out of fear. I was almost 19weeks when I did it, and I really am so grateful the numbers were so low because if had been a positive screen (even though they are notoriously wrong!!!) I would have just lost it. I shouldnt have taken the gamble in hindsight.

Pregnancyinfo.net (i think its the site) has a whole section of moms who post about EIF and they come back to post the results from thier births and I read baout 1000 lol and they always are born perfectly fine. My midwife also said that technology is picking up all kinds of htings that are often normal variants, but liability -wise, they have to tell the mothers...I sometimes wish they didnt
post #9 of 18
Thread Starter 
Quote:
Originally Posted by mom_2_3_boys View Post
I am also one who has never had genetic testing until I freaked about this silly soft marker, and I went out of fear. I was almost 19weeks when I did it, and I really am so grateful the numbers were so low because if had been a positive screen (even though they are notoriously wrong!!!) I would have just lost it. I shouldnt have taken the gamble in hindsight.

Pregnancyinfo.net (i think its the site) has a whole section of moms who post about EIF and they come back to post the results from thier births and I read baout 1000 lol and they always are born perfectly fine. My midwife also said that technology is picking up all kinds of htings that are often normal variants, but liability -wise, they have to tell the mothers...I sometimes wish they didnt
That's exactly what my MW said- that because US are getting so much better, they're catching stuff like this more and more, and there's not enough research yet to really know what's normal and what's not.
post #10 of 18
No freakin' WAY!!!!! We saw Dr. Thorp!!! He's the BOMB. Super nice guy, his office staff were great (at least they were 6 years ago!)...only bad part was that he works (or worked) with a real jack-tush that we nicknamed "Dr. Pirate" because of his gold hoop earring. I don't see him on the Regional Perinatal page anymore, though, so maybe he's gone now. Dr. Thorp recommended genetic counseling and an amnio, but was totally cool with it when we refused...he's not the pushy type. And he's a huge hockey fan! (that went a long way with my husband ) And since there WAS a problem with my son's heart (I hope it's just a false alarm with yours), I had to have a cardiologist lined up. IF you do, Dr. Mary Mehta practices at Nemour's Children's Clinic (at Sacred Heart) and she's so sweet and so awesome and explains everything in great detail. I'd highly recommend her if you need one. My experience at Sacred Heart was not good, though, I'll warn you. It's a teaching hospital and when they ask you if you allow an intern/resident to attend your birth, they don't mean "there to watch", they mean deliver your baby. This dude cut an episiotomy without my consent and then pulled out my placenta in shreds instead of letting me birth it. He pressured me to have a pitocin drip. He was wretched. So, if you give birth there, don't allow any interns or residents near your body or your baby. I was also unimpressed with the nursing staff. They weren't supportive of my birth plan, yelled at me for sucking on a lollipop during labor to keep my mouth moist, and wouldn't even change the pad under me after they broke my water because "it's just going to get soaked again"!!!! I went all nurse-ballistic on them at that point. They wouldn't let me get out of bed with the monitor on or anything. I'd highly recommend having a doula or a support person who's very well-versed in your birth plan and your wishes. I think it would have been a much better experience if someone had told me this stuff. If you have any questions at all, let me know!! Still sorry you have to be going through all of this, but it's cool that it's such a small world! You guys must be at Eglin, huh?
post #11 of 18
Thread Starter 
Quote:
Originally Posted by starshine1001 View Post
No freakin' WAY!!!!! We saw Dr. Thorp!!! He's the BOMB. Super nice guy, his office staff were great (at least they were 6 years ago!)...only bad part was that he works (or worked) with a real jack-tush that we nicknamed "Dr. Pirate" because of his gold hoop earring. I don't see him on the Regional Perinatal page anymore, though, so maybe he's gone now. Dr. Thorp recommended genetic counseling and an amnio, but was totally cool with it when we refused...he's not the pushy type. And he's a huge hockey fan! (that went a long way with my husband ) And since there WAS a problem with my son's heart (I hope it's just a false alarm with yours), I had to have a cardiologist lined up. IF you do, Dr. Mary Mehta practices at Nemour's Children's Clinic (at Sacred Heart) and she's so sweet and so awesome and explains everything in great detail. I'd highly recommend her if you need one. My experience at Sacred Heart was not good, though, I'll warn you. It's a teaching hospital and when they ask you if you allow an intern/resident to attend your birth, they don't mean "there to watch", they mean deliver your baby. This dude cut an episiotomy without my consent and then pulled out my placenta in shreds instead of letting me birth it. He pressured me to have a pitocin drip. He was wretched. So, if you give birth there, don't allow any interns or residents near your body or your baby. I was also unimpressed with the nursing staff. They weren't supportive of my birth plan, yelled at me for sucking on a lollipop during labor to keep my mouth moist, and wouldn't even change the pad under me after they broke my water because "it's just going to get soaked again"!!!! I went all nurse-ballistic on them at that point. They wouldn't let me get out of bed with the monitor on or anything. I'd highly recommend having a doula or a support person who's very well-versed in your birth plan and your wishes. I think it would have been a much better experience if someone had told me this stuff. If you have any questions at all, let me know!! Still sorry you have to be going through all of this, but it's cool that it's such a small world! You guys must be at Eglin, huh?
Wow! Totally small world :-) Yeah, my mw said Dr. Thorp is a super smart guy, so that makes me feel better. To be honest, if the only concern is Downs (not sure what else this marker is assoc. with), and no other markers are identified, I will probably refuse an amnio, but I'll cross that bridge when/if I get there.

And yep, I'm at Eglin. My referral for my home birth is still be worked, and I'm still hoping it may happen. Eglin is the bane of my existence- plus, I live more towards P-cola, and if they think I'm going to drive 45 minutes to their hospital while I'm in labor, they must be crazy.

....And thanks for the heads-up about Sacred Heart!
post #12 of 18
Dude, I was in Panama City...I drove 3 hours in labor! (Well, my husband drove me, but you get my drift) Well, again, hopefully this is just a false alarm and your babe is fine and you get your homebirth.
post #13 of 18
I am pretty sure that down syndrome is the only 'risk' if you want to call it that , with this soft marker
post #14 of 18
What a scary experience! I can't help but feel that that all of this could've been handled WAY better. But yeah, like others have said, an isolated soft marker is very, VERY rarely indicative of anything at all. My baby has one of those too (not the heart shadow, but a different soft marker--a choroid plexus cyst). I completely freaked out, since I do have a history of a baby with a trisomy, but it turned out to be nothing. I bet yours will be the same.
post #15 of 18
Thread Starter 
Thank you, everyone.

I guess at this point I'm more upset with how the situation was handled than anything else.
post #16 of 18
Hopefully the better ultrasound will show there is no real problem. That would be nice!
post #17 of 18
I too hope that seeing this doctor will put your mind at ease. Good luck, and glad to hear that he is a good doctor.
post #18 of 18
Quote:
Originally Posted by ein328 View Post
Thank you, everyone.

I guess at this point I'm more upset with how the situation was handled than anything else.
Yeah, rightfully so They really need to figure out how to present their information in a more appropriate manner, especially to pregnant, emotional women. So sorry you had to go through all that fear.
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