Friday, February 16, 2007

Intracardiac Echogenic Focus (ICEF)???what?















This is a Ultrasound(US)Picture taken of our little boy due in a couple months. YOu can see his face and arm if you know what to look for? :0)
Anyway,we had opted to test out of all the xtra testings for Down Syndrome etc.b/c I have known too many people who have ended up carrying unnecessary worry through a completely healthy pregnancy and I have no intentions of abortion even w/ a DS child--I can think of 4 people in just my circle off hand who had scares that turned out to be nothing (xcept that they stressed throughout the rest of their pregnancies).
So now I guess it's my turn to walk down this dreadful road...I have had 3 Ultrasounds that were perfect xcept for the baby not turning on his side to allow better pics of his heart, so I then was referred to a perinatologist that specializes in problems (i guess) and they have the technology to take more detailed pics....so yesterday we drove an hour to them to try again for some good pics of this little "guyontheways" heart--i had been assured many times not to worry b/c it was just a matter of positioning--so i didn't worry at all.
After a detailed one hour (not kidding) US and the techs not saying a word--i started obviously worrying. Then they send me in to speak w/ the neonatologist who simply states,"there is a bright spot on your babies heart called and intracardiac echogenic focus (ICEF)..." WhaT?????? (suddenly he was Charlie Brown's teacher and i never understood anything else he had to say) so i asked,"what does this mean?" and he tells me (just what i had avoided all this time), "this is a Down's marker and doubles your age-factor risks of this baby being DS,so I will pass this on to your OB and they will speak w/you re:genetic counseling etc--blah-blah--have a nice day!"
OK, so what the heck just happened? Thank God my husband made it to the appt w/me or i wouldn't have made it home....i have been crying ever since...and I don't really care what they have to say now that the worry is there,I am stressed and will be until my little guy is here.
We spent last night researching this ICEF and I found an essay that a OB doc had written in an OB Journal after coming across a DS"marker" in an otherwise healthy pregnancy...this rang true with me....i will attach some of it here...

"Tomorrow when I return to work the odds are I will have to speak to a mother-to-be about an “abnormality” that I see on her sonogram and I won’t know what to tell her. I am talking about “abnormal” findings on her sonogram which loosely fit under the general heading of “Down syndrome markers” (some are actually better as markers of other trisomy syndromes). I am not referring to atrio-ventricular canal or duodenal atresia. These are strong indicators that the Down syndrome may be present. But Down syndrome or not, the fetus still has a serious anomaly and the detection of that anomaly is a benefit. What I am afraid to encounter tomorrow is an “abnormality” which is not really abnormal: choroid plexus cysts (3-31), echogenic intracardiac foci (32-36), mild pyelectasis (37-41), and echogenic bowel (42-45) . If her fetus has one of these “abnormalities” but doesn’t have the Down syndrome, then her fetus is normal. ...But then investigators (with the best of intentions, I am certain) appear to have taken a misstep. These findings when seen in a woman with a low risk of having a Down syndrome fetus were used to upgrade her risk (40, 77). The consumers of this information, the physicians in the trenches, read these scientific papers and then identify these “abnormalities” during a routine sonogram. What are they to tell the patient? This woman hasn’t already been counseled. She is having a sonogram for “reassurance” (forget that now). Her husband, children and parents are with her. There is a party atmosphere. The videotape is rolling. Soon the giggling and finger pointing at the screen will cease. The questions will change abruptly from “is that the heartbeat?” or “is that the penis there?” to “are you saying that my child is going to be mentally retarded?”

Without doubt you have now added cost to the management of that pregnancy. The patient may choose to undergo amniocentesis. She may be referred to a prenatal diagnostic center for a detailed fetal sonogram and genetic counseling. The innumerable hours of counseling by primary care givers and general sonologists to explain the “meaning” of this finding are not counted in these additional costs (78). Nor are the heartaches of the parents-to-be counted in this cost analysis. If they forego the amniocentesis (clearly the correct choice, in my opinion) then they must live with residual doubt for the remainder of the pregnancy. Does my fetus have the Down syndrome? Maybe I should have had the amniocentesis. The enjoyment of the anticipation of the birth of their son or daughter is now replaced with anxiety.

Well you say, look at all the good these findings have accomplished. Some bad must go along with all that good. Possibly I am the exception (I doubt it), but I don’t see “all the good”. I am a simple-minded physician. I like it when a sonographic finding passes the “Thank God Test”. The Thank God Test is passed when I say to myself “thank God” for that finding. If I hadn’t seen it I would have completely missed this devastating abnormality. I have no instance in my recollection where one or the other of these abnormalities was the sole reason I was able to recognize a fetus with the Down syndrome in a low risk patient. (This presumes, of course, that a reasonably careful sonogram following the AIUM guidelines has been performed.) Obviously someone has had such an experience: just not me. From my vantage point the identification of these “abnormalities” in low risk women has crossed the line of “more harm than good”.For the tiny residual number of Down syndrome fetuses that may potentially come to light by chasing down every last “marker” we intend to put at least 10% of all pregnant women with perfectly normal fetuses through a great deal of worry.

So then, what should I do tomorrow? Should I have the courage of my convictions and simply ignore these features? I wish I had that courage, but I don’t. Even with my considerable “clout” in the world of obstetrical sonography, I cannot unilaterally ignore the sonographic medical literature. That is not how American medicine works.

I am confident that I am not alone in my concerns regarding this issue. I further believe that the authors who did this excellent research in the “high risk” population are becoming aware that these features are not proving as beneficial in the “low risk” population as they had hoped. It is time for the American Institute of Ultrasound in Medicine or the American College of Obstetrics and Gynecology to convene a panel of experts to analyze the data on this issue and publish a position paper on the practicality of employing Down syndrome “markers” in low risk women at the soonest possible date."


So, here is where I ask you to first please keep us in your prayers as I am now the worried mother, and second that if anyone reading this has had a similar experience or word of encouragement I would love a comment. Thanks. Hangin'in there....Ps 139:16

32 comments:

In the Trenches of Mommyhood said...

You're in my thoughts, Kim. Wish I was there to give you a big hug and to tell you the words that I'm sure you'll hear over and over again, "Don't worry." Please keep me posted. Love, Sarah

ed's girl said...

So today i spent online,literally, researching everything i could about ICEF and Down's Syndrome--found some very passionate/inspir-
ational blogs...this verse settles me for now
Psalm 139:16 "You saw me before I was born.Every day of my life was recorded in Your Book.Every moment was laid out before a single day had passed." Thanks for the hug! I needed it.

Lorilu said...

I can ONLY imagine what you are feeling, since I have not been in your shoes. I will be keeping you in my prayers.

Gretchen said...

I was told my baby had a 1 in 6 chance of DS due to the nucchal translucency, but it all turned out OK...hoping & praying for the best for you & your little one!

liz maryland said...

Hi Kim,

I hope that you have found more peace in your research. Thank you so much for taking the time out to comment and share your experience in my blog.

While we're kinda "over" our scare, it still lingers in the back of our minds but we're going to champion on as best as we can. I'm hoping that you can do the same. I've got my fingers crossed for the best possible outcome for you and your family!

Hugs! - Liz

Shell in the City said...

You all are definitely in my thoughts and prayers!! I pray that the Lord will give you peace and comfort during this time and that you will deliver a healthy little boy. It seems that doctors err on the side of worst case scenarios when they notice something that may be abnormal.

onehotpotato said...

this baby is already so blessed and loved. i pray for you every day---God is in full control--this has not taken Him by surprise. He has conversation with your little one and is holding him in His big, strong hands. you are an amazing person, kim. God is increasing your faith--big life lessons of faith. this is where your theology needs to meet up with your reality (Beth Moore). God is who He says He is. God can do what He says He can do. how great is our God....and all the world will see....how great is our God.

lots of love from my heart.

ed's girl said...

First of all ThankYou all for your constant support and prayers. We have really felt the love on our
end! We finally got to speak w/ our OB doc this morning and he was very encouraging. He said to just
try our best to put this out of our heads til delivery. Even though ICEF isn't a common finding,
It is only a "marker" and coupled w/ all my other tests being normal findings, and our strong stance
on pro-life--he did not recommend doing the amnio at this point in a pregnancy (28wks). He offered another ultrasound in a month if we were interested for peace of mind. His overall perception seemed very positive which personally I needed to hear.
All that said, please continue to keep our family and our little guy in your prayers!
Love to all~Kim and Ed

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