Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Regarding poll. Can anyone explain exactly what dual vessel cord is please? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 I answered yes thinking it means single umbilical artery or the cord just having one artery (instead of 2) and a vein. If this is wrong, I may need to change my answer... Janay > > Regarding poll. Can anyone explain exactly what dual vessel cord is > please? Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 What is single umbilical artery? " About 1 percent of singleton and about 5 percent of multiple pregnancies have an umbilical cord that contains only two blood vessels, instead of the normal three, as one artery is missing. The cause of this abnormality is unknown. If an ultrasound examination shows that the baby appears to have no other abnormalities, the baby is likely to be born healthy. However, studies suggest that about 25 percent of babies with single umbilical artery have birth defects, including chromosomal and/or other abnormalities. A woman whose baby is diagnosed with single umbilical artery during an ultrasound examination may be offered prenatal testing using ultrasound evaluation of the fetal heart and amniocentesis to diagnose or rule out chromosomal abnormalities. Even if the baby does not appear to have birth defects, the pregnant woman will probably be monitored carefully for the remainder of the pregnancy because of a somewhat increased risk of poor fetal growth, preterm delivery and stillbirth. " -- Re: dual-vessel cord issue I answered yes thinking it means single umbilical artery or the cord just having one artery (instead of 2) and a vein. If this is wrong, I may need to change my answer... Janay > > Regarding poll. Can anyone explain exactly what dual vessel cord is > please? Thank you > CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 You're right, it's the same thing. had a two-vessel cord as well. I think I brought this issue up on the list a long time ago, but I believe I was told there was no correlation. I'd be interested to see the results of this poll after more people have weighed in...right now it's at 50/50. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Yes, I was told that would be likely to have organ defects, particularly heart and kidney defects. Interestingly enough, when they found he had colobomas, I was also told there was a significantly increased likelihood that he would have kidney defects. , if you read this message, have you found any links or any studies done that back up what I was told about the coloboma-kidney link? (Incidentally, does have kidney defects). Thanks in advance! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Rasha has kidney defects too. I believe the nephrologist told us in the early days this is common because they develop around the same time. When he was explaining I was still in shock at what was happening so I don't have any better info than that. She was born with creatinine at 1.3 and they were talking about dialysis on her 5th day...She has since stabilized with no dialysis but has small kidneys- one that hasn't grown this year at all-and the growing one has 2 cysts in it which were seen prenatally. Janay > > Yes, I was told that would be likely to have organ defects, > particularly heart and kidney defects. Interestingly enough, when they > found he had colobomas, I was also told there was a significantly > increased likelihood that he would have kidney defects. > > , if you read this message, have you found any links or any > studies done that back up what I was told about the coloboma-kidney > link? (Incidentally, does have kidney defects). Thanks in > advance! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 > > > > Regarding poll. Can anyone explain exactly what dual vessel cord is > > please? Thank you > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www > chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 I don't remember anyone mentioning anything about our sons umbilical cord at birth or at any ultrasound prior to his birth. I would be very curious to know if he had a single umbilical artery. Sorry to bombard you with all these questions but I was wondering? Is a single umbilical artery something that is routinely checked for on an ultrasound? Would a single umbilical artery be something that would be recorded on medical records at birth and is there any other terminology that it might be recorded as? If you looked at stored cord blood could it be determined if a child had a single umbilical artery? -,proud Mom of 2 years old (CHARGE), 6 years old and wife to Pat (Long Island, New York) > > > > Regarding poll. Can anyone explain exactly what dual vessel cord is > > please? Thank you > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www > chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Hello I have to do some more checking on the umbilical cord issue.. In regards to my grandson, all I really know is that he was " turned around " and was told she would need a C.Section, but that is the ONLY thing she was told that was abnormal prior to delivery.. She had several US and even one a week before delivery, and NOTHING was said, not even the fact that the baby was only less than 5 pounds. As a matter of fact she was told the baby would probably be around 7 or more pounds. So on the day he was delivered by C Section, he came out and they said " his cord was in a knot " ...now I dont know if this has any significance, as nothing was said about it. They also told that her placenta looked " old " and they had to scrape it ? Then when was born with breathing problem, they said, " oh, this is often the case with C.Section babies " ....but within a couple of hours he was in the NICCU and we were being told he had a heart defect(Tetralogy of Fallot) and they also began to mention other problems such as " coloboma " and possible CHARGE syndrome. I heard that the OB doctor was quoted as saying " In retrospect, maybe I should have looked at the heart closer " ....Hmmmm Personally, I feel that some of the abnormalities seen in Charge babies could be seen on ultrasound, such as size of baby, heart defect, or even the ventricles of the brain and some brain abnormalities. WHY then was nothing mentioned? And the cord being tied in a knot, does this have any significance? Still alot of unanswered questions..... LIZ -- Re: dual-vessel cord issue I don't remember anyone mentioning anything about our sons umbilical cord at birth or at any ultrasound prior to his birth. I would be very curious to know if he had a single umbilical artery. Sorry to bombard you with all these questions but I was wondering? Is a single umbilical artery something that is routinely checked for on an ultrasound? Would a single umbilical artery be something that would be recorded on medical records at birth and is there any other terminology that it might be recorded as? If you looked at stored cord blood could it be determined if a child had a single umbilical artery? -,proud Mom of 2 years old (CHARGE), 6 years old and wife to Pat (Long Island, New York) > > > > Regarding poll. Can anyone explain exactly what dual vessel cord is > > please? Thank you > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www > chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 I am not sure if it's routinely checked on ultrasound, but at birth I am certain it is checked when they check the placenta after it is delivered (it is always noted in the delivery summaries I've read in my children's medical records). I think the only reason they really saw it on my son's ultrasound was because they mentioned that his limbs were quite short and thought he may have had dwarfism, so I assume they were just checking things in closer detail then. On ultrasounds of my subsequent children, I have always asked the ultrasound techs if there was a two-vessel cord...they were not allowed to tell me if anything was wrong, but they would get an image of the cord on the screen and point out what was what. I think the article Liz posted gave the alternate names for it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Liz, was also in frank breech position; however I delivered him vaginally. He also had breathing problems, and prior to delivering him, my OB said to not be alarmed if they had to rescucitate him, as it is common in vaginally delivered breech babies. They thankfully did not have to do this, though he had what they called " transient tachypnea of the newborn " and also had fluid streaking on his lung x- rays. His umbilical cord was not knotted, however it was short and not kinked (normal cords look kind of twisted). They did diagnose the short, straight cord via ultrasound before delivery and told me that there was a greater chance that blood flow would be cut off because it was not kinked (like a garden hose if it twists the wrong way). As for diagnosing CHARGE via ultrasound, I don't know what to think about that. I just read about baby Tate whose CHARGE features were confirmed via ultrasound, but I believe it said it was 3D...not sure if that makes a difference or not. I guess there are just so many features of CHARGE that occur in other syndromes. I don't know if colobomas can be diagnosed by fetal ultrasound, but most certainly the heart defects should have been detected. I can empathize in your search to find answers. I often wonder if his cerebral palsy could have been prevented if I had not induced or if I had a c-section instead. Many doctors have told me not to blame myself, that he has so many other abnormalities which happened early on that the brain damage surely happened then, too. For me, though, until I get a definitive answer, there will always be that little space in me filled with guilt...but I have to put that aside so I can help make the most of his life and be as happy and healthy as possible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 had a short cord, but nothing was mentioned about the vessel aspects. Now I am very curious about it! Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 No, you should not blame yourself at all. I think most of these problems developed in the first trimester and were probably genetic but I can certainly understand your feelings. I understand from your previous mail that had an abnormal MRI, was that at birth? and he was not diagnosed with CP until 3? In what area of the brain is the atrophy? I wonder if the brain changes as the baby matures, or can they make a diagnosis early on? Is the atrophy what causes the CP? Oh, so many questions... -- Re: dual-vessel cord issue Liz, was also in frank breech position; however I delivered him vaginally. He also had breathing problems, and prior to delivering him, my OB said to not be alarmed if they had to rescucitate him, as it is common in vaginally delivered breech babies. They thankfully did not have to do this, though he had what they called " transient tachypnea of the newborn " and also had fluid streaking on his lung x- rays. His umbilical cord was not knotted, however it was short and not kinked (normal cords look kind of twisted). They did diagnose the short, straight cord via ultrasound before delivery and told me that there was a greater chance that blood flow would be cut off because it was not kinked (like a garden hose if it twists the wrong way). As for diagnosing CHARGE via ultrasound, I don't know what to think about that. I just read about baby Tate whose CHARGE features were confirmed via ultrasound, but I believe it said it was 3D...not sure if that makes a difference or not. I guess there are just so many features of CHARGE that occur in other syndromes. I don't know if colobomas can be diagnosed by fetal ultrasound, but most certainly the heart defects should have been detected. I can empathize in your search to find answers. I often wonder if his cerebral palsy could have been prevented if I had not induced or if I had a c-section instead. Many doctors have told me not to blame myself, that he has so many other abnormalities which happened early on that the brain damage surely happened then, too. For me, though, until I get a definitive answer, there will always be that little space in me filled with guilt...but I have to put that aside so I can help make the most of his life and be as happy and healthy as possible. CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 My understanding is that a single artery cord looks thinner or smaller. The cord is something that my Dr. always looked at (and took measurements of ) when he perfomed my ultrasounds. I would think that it is one of the things that is always evaluated--kind of like measuring the head circumfrence, to make sure everything is progressing normally mmcdonald1220 wrote: I don't remember anyone mentioning anything about our sons umbilical cord at birth or at any ultrasound prior to his birth. I would be very curious to know if he had a single umbilical artery. Sorry to bombard you with all these questions but I was wondering? Is a single umbilical artery something that is routinely checked for on an ultrasound? Would a single umbilical artery be something that would be recorded on medical records at birth and is there any other terminology that it might be recorded as? If you looked at stored cord blood could it be determined if a child had a single umbilical artery? -,proud Mom of 2 years old (CHARGE), 6 years old and wife to Pat (Long Island, New York) > > > > Regarding poll. Can anyone explain exactly what dual vessel cord is > > please? Thank you > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www > chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Hi Liz, Getting a diagnosis like CHARGE syndrome is hard, no matter when you get it. I did not know my son had CHARGE syndrome until a week after he was born. He was born at 32 weeks, six hours after my water broke. I had known for about 3 weeks that I had a condition called polyhydramnios--too much amniotic fluid. Although you can have it and the baby is perfectly normal, it often means there is some sort of fetal defect that interfears with the baby being able to normally swallow the fluid (which helps to regulate the amount present). So at 29 weeks, my Dr. performed a 3rd ultrasound (the 2 previous ones had been unremarkable). He told me the kidneys had some extra fluid, but he often saw that and it resolved after birth. He had difficulty visualizing the stomach, but finally did see it so he knew it was there. There did not appear to be any cleft lip or palate or heart defects. He sent me for a higher resolution ultrasound (a level 2) at 30 weeks. At this ultrasound, there again was difficulty visualizing the stomach. It appeared one kidney was abnormal (they called it a " pelvic " kidney). The brain looked ok, and they didn't see any heart defects, although Evan wasn't cooperating, and the position of his arm precluded getting some of the views they needed. The OB told me that because I had 3 abnormalities (the polyhydramnios, the abnormal kidney, and the small stomach), my baby very likely had a syndrome. It would be difficult to diagnose prenataly, so all I could do was to " try not to worry about it, " and they would perform a second level 2 U/S in two weeks. The larger the baby was, it would be easier to see the organs. That was very hard news to hear--I kept thinking " How could this be happening to me? " I hated the OB--in retrospect mostly for what she told me--but also for the way she said it (not the best bedside manner). I asked my Dr. for a second opinion, and he arranged for a second level 2 U/S at a different hospital. I never made it to that appointment--Evan was born a week after the first level 2. He had been measured by U/S, and my Dr. told me he would be around 4 lbs if he was born the day my water broke. He actually weighed 3 lbs 1 oz--I think determining pre-birth weight is not an exact science, they can only estimate. It turned out that Evan only had one kidney--the other one never developed, and he did have polyhydronephrosis (fluid build up). No heart defects. His stomach was smaller than normal, and he had severe acid reflux. He also had a sliding hiatal hernia (stomach sliding up through the diaphragm, crowding the lungs)--the hernia wasn't diagnosed until he was 8 weeks old. And he did turn out to have a cleft soft palate. I think most parents don't get a CHARGE diagnosis until after birth. I ask myself this all the time--would it have changed anything if I would have known sooner? I wouldn't have terminated my pregnancy, and I just would have been the nervous wreck I was the last week of pregnancy for the whole thing. Ultrasound gives Drs. an incredible look at life inside the womb, but it isn't perfect. It's like any medical test or procedure--it has limitations. (mom to Evan, 13 months) Stromsnes Dolz wrote: Hello I have to do some more checking on the umbilical cord issue.. In regards to my grandson, all I really know is that he was " turned around " and was told she would need a C.Section, but that is the ONLY thing she was told that was abnormal prior to delivery.. She had several US and even one a week before delivery, and NOTHING was said, not even the fact that the baby was only less than 5 pounds. As a matter of fact she was told the baby would probably be around 7 or more pounds. So on the day he was delivered by C Section, he came out and they said " his cord was in a knot " ...now I dont know if this has any significance, as nothing was said about it. They also told that her placenta looked " old " and they had to scrape it ? Then when was born with breathing problem, they said, " oh, this is often the case with C.Section babies " ....but within a couple of hours he was in the NICCU and we were being told he had a heart defect(Tetralogy of Fallot) and they also began to mention other problems such as " coloboma " and possible CHARGE syndrome. I heard that the OB doctor was quoted as saying " In retrospect, maybe I should have looked at the heart closer " ....Hmmmm Personally, I feel that some of the abnormalities seen in Charge babies could be seen on ultrasound, such as size of baby, heart defect, or even the ventricles of the brain and some brain abnormalities. WHY then was nothing mentioned? And the cord being tied in a knot, does this have any significance? Still alot of unanswered questions..... LIZ -- Re: dual-vessel cord issue I don't remember anyone mentioning anything about our sons umbilical cord at birth or at any ultrasound prior to his birth. I would be very curious to know if he had a single umbilical artery. Sorry to bombard you with all these questions but I was wondering? Is a single umbilical artery something that is routinely checked for on an ultrasound? Would a single umbilical artery be something that would be recorded on medical records at birth and is there any other terminology that it might be recorded as? If you looked at stored cord blood could it be determined if a child had a single umbilical artery? -,proud Mom of 2 years old (CHARGE), 6 years old and wife to Pat (Long Island, New York) > > > > Regarding poll. Can anyone explain exactly what dual vessel cord is > > please? Thank you > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www > chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 I agree . I think the cord is something that is looked at closely as part of a routine US. When they do the color and watch the bloodflow they can see if something is missing. They saw hers at 20 weeks on a regular US. The level 2 revealed an echogenic focus in the heart-a dark spot that sometimes indicates a reason to look further and sometimes not-extra-renal pelvis and underdeveloped cerebellar vermis in her brain. The Dr thought she just had Dandy variant and the cardio said her heart was fine on the fetal echo. Turns out her PDA didn't close which you don't know til it doesn't close and that she has 2 ASDs which are still there. We had no indication she's deaf until she finally had her newborn hearing screen at 4 weeks old and failed. I was convinced until recently that she lost her hearing due to med combos. I think US is very helpful but they just can't see as well as we wish they could. Funny part is no one suspected CHARGE until we found it on the internet. They thought she had Joubert's Syndrome (which she doesn't)... Janay > > > > > > Regarding poll. Can anyone explain exactly what dual vessel cord > is > > > please? Thank you > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute > membership in the > > CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@ or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be > available at www > > chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Now this is interesting because not only does have the two- vessel cord in common, he also has the Dandy- variant. However, his wasn't diagnosed until 6 weeks of age. Weird?! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Hi Liz, has softening of the tissue around the ventricles. I am told this is caused by lack of oxygen to the brain at some point either before, during or shortly after birth. He had seizures after birth, but none of them significant enough to have caused this type of damage (with the exception of one which lasted 30 minutes during which his daycare caregivers stood around watching and waiting for me to pick him up rather than call an ambulance!! Grrrrr!!). However, I cannot remember if that seizure happened after he was diagnosed with CP...most likely it did if I didn't sue anybody yet We were also told that the damage is static, meaning it happened and it does not progressively get worse...in other words, the damage is done and there is no deterioration. The diagnosis CP is given any time there is damage to brain tissues due to lack of oxygen to the brain before, during or shortly after birth. I worked with a child who was diagnosed with CP at 6 months of age because he had a stroke at that time and now has severe spastic cerebral palsy (there are spastic and hypotonic; spastic being the rigid, hypertonic muscle type and hypotonic being the " floppy " , lower muscle tone type). Anyway, he had many CT scans which only showed a couple of abnormal things, such as an enlarged fourth ventricle and a mega cisterna magna (all of which were deemed to be " variants of normal " ). When he began to have seizures again after a 2 year break, he had an MRI at which time they found the brain tissue damage. Apparently the CT doesn't visualize things as well as a an MRI (or does so differently). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Sorry to all for posting the poll and not explaining the cord issue. The explanation below is correct. I had a single umbilical artery (my doctor called it a dual vessel cord) with Felix's pregnancy. I was told it was a " soft marker " for Down Syndrome and other " birth defects " - it never got more specific than that. I had the AFP which came back positive for Down's and then had the amnio which came back " clear " . When the CHARGE diagnosis was made the geneticist said the dual vessel cord probably had nothing to do with Charge, but he wasn't very confident so I was wondering if anyone else had the same issue with their pregnancies. Mom to Max 2 1/2 and Felix 5 month Charger in MA > > > > Regarding poll. Can anyone explain exactly what dual vessel cord is > > please? Thank you > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www > chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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