dual-vessel cord issue

[Guest guest]

Regarding poll. Can anyone explain exactly what dual vessel cord is

please? Thank you

[Guest guest]

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

>

[Guest guest]

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-.

[Guest guest]

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.

[Guest guest]

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!

[Guest guest]

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!

>

[Guest guest]

> >

> > 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-.

>

[Guest guest]

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-.

>

[Guest guest]

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-.

>

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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@...

[Guest guest]

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-.

[Guest guest]

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-.

>

[Guest guest]

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-.

>

[Guest guest]

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-.

> >

[Guest guest]

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?!

[Guest guest]

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).

[Guest guest]

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-.

>