Re: Introduction Regarding Umbilical Cord

May 14, 2006

>Do you remember anything concerning 's umbilical cord? Is there

>anything on her birth record? Did you hear them say anything?

_____

I thought I would jump in here. My daughter was diagnosis

at birth through newborn hearing screening.

We have been through genetics testing several times and have

never have come up with a reason or cause

for le's hearing loss. She was a 33 week preemie and

has other issues besides hearing loss, however

at the time of her birth, they did mention that she had a

two vessel umbilical cord, (usually they are three). At first

I didn't think anything of it, but there was a lot of

comments regarding that by the docs that were involved in her

case in the NICU. She is now 7; however, it's always been in

the back of my mind that the cord could have had

a lot of do with this issues we were dealing with when she

was born. The doctor's have stated that her loss was not due

to being premature, they feel that all her issues would have

been there even if she was full term.

She was a big preemie she weighed 4.7 pounds at birth. Just

thought I would chime in here.

Take Care,

Colleen

May 14, 2006

I know what you mean, Colleen. I plan to explore it further.

Blessings,

Robin

Mother of Sydney, 5, Bilat. LVAS (we think) . . . born with two very bad

umb. cord knots

>

> >Do you remember anything concerning 's umbilical cord? Is there

> >anything on her birth record? Did you hear them say anything?

> _____

>

> I thought I would jump in here. My daughter was diagnosis

> at birth through newborn hearing screening.

> We have been through genetics testing several times and have

> never have come up with a reason or cause

> for le's hearing loss. She was a 33 week preemie and

> has other issues besides hearing loss, however

> at the time of her birth, they did mention that she had a

> two vessel umbilical cord, (usually they are three). At first

> I didn't think anything of it, but there was a lot of

> comments regarding that by the docs that were involved in her

> case in the NICU. She is now 7; however, it's always been in

> the back of my mind that the cord could have had

> a lot of do with this issues we were dealing with when she

> was born. The doctor's have stated that her loss was not due

> to being premature, they feel that all her issues would have

> been there even if she was full term.

> She was a big preemie she weighed 4.7 pounds at birth. Just

> thought I would chime in here.

> Take Care,

> Colleen

>

May 14, 2006

There is kind of a saying in neonatology - if you see one anomaly, look for

others. The reason is that something caused the noticeable structure to have a

problem, and whatever that was, it could have caused problems elsewhere

especially in structures being formed at the same time. So often, with heairng

impaired kids they check kidney function, because kidneys and ears form at the

same time. My cousin was born without an anus, and they found he only had one

kidney. Often you will see a pattern, and that is what is sometimes called a

syndrome. Syndromes can be caused by genetics, though not all syndromes are.

And there are a lot of syndromes that include deaf/hh. So that is why a

thorough work up for hearing loss usually involves an EKG - because there is a

syndrome with abnormal EKG and hearing loss, and thyroid function, because of

Pendreds. The CT of the head that is often part of the diagnostic workup is to

look at the bony structure of the cochlea, and that is the part of the work up

that is directly related to the hearing loss. A two vessel umbilical cord is

one of those immediately noticeable anomalies, that lead the doctors to look

for other things.

May 14, 2006

As far as we know, our daughter's kidneys are fine. We know her cochlea is

because it was looked at with the CT scan. However, she was born with a

sacral dimple. I've never seen anything linking hearing loss and sacral

dimple, though, and I have looked HARD. I have two slightly webbed toes on

each foot which is supposedly linked to some anomalies, and my cousin and

her son have Cruzon's Syndrome (probably spelled wrong) which is a

craniofacial disorder marked by flat forhead, misshapen eye(s) and/or nose .

.. . basically the disorder causes the fontanelle (soft spot) not to close.

It has to be surgically closed. I think I have that right. I am not sure

if any of this relates. Any guesses, anyone?

Robin

>

> There is kind of a saying in neonatology - if you see one anomaly, look

> for others. The reason is that something caused the noticeable structure to

> have a problem, and whatever that was, it could have caused problems

> elsewhere especially in structures being formed at the same time. So

> often, with heairng impaired kids they check kidney function, because

> kidneys and ears form at the same time. My cousin was born without an

> anus, and they found he only had one kidney. Often you will see a

> pattern, and that is what is sometimes called a syndrome. Syndromes can be

> caused by genetics, though not all syndromes are. And there are a lot of

> syndromes that include deaf/hh. So that is why a thorough work up for

> hearing loss usually involves an EKG - because there is a syndrome with

> abnormal EKG and hearing loss, and thyroid function, because of Pendreds.

> The CT of the head that is often part of the diagnostic workup is to look at

> the bony structure of the cochlea, and that is the part of the work up that

> is directly related to the hearing loss. A two vessel umbilical cord is one

> of those immediately noticeable anomalies, that lead the doctors to look

> for other things.

>

> All messages posted to this list are private and confidential. Each post

> is the intellectual property of the author and therefore subject to

> copyright restrictions.

>

May 14, 2006

Re: Introduction Regarding Umbilical Cord

As far as we know, our daughter's kidneys are fine. We know her cochlea

is

because it was looked at with the CT scan. However, she was born with a

sacral dimple. I've never seen anything linking hearing loss and sacral

dimple, though, and I have looked HARD. I have two slightly webbed toes

on

each foot which is supposedly linked to some anomalies, and my cousin

and

her son have Cruzon's Syndrome (probably spelled wrong) which is a

craniofacial disorder marked by flat forhead, misshapen eye(s) and/or

nose .

.. . basically the disorder causes the fontanelle (soft spot) not to

close.

It has to be surgically closed. I think I have that right. I am not

sure

if any of this relates. Any guesses, anyone?

Robin

>

> There is kind of a saying in neonatology - if you see one anomaly,

look

> for others. The reason is that something caused the noticeable

structure to

> have a problem, and whatever that was, it could have caused problems

> elsewhere especially in structures being formed at the same time. So

> often, with heairng impaired kids they check kidney function, because

> kidneys and ears form at the same time. My cousin was born without an

> anus, and they found he only had one kidney. Often you will see a

> pattern, and that is what is sometimes called a syndrome. Syndromes

can be

> caused by genetics, though not all syndromes are. And there are a lot

of

> syndromes that include deaf/hh. So that is why a thorough work up for

> hearing loss usually involves an EKG - because there is a syndrome

with

> abnormal EKG and hearing loss, and thyroid function, because of

Pendreds.

> The CT of the head that is often part of the diagnostic workup is to

look at

> the bony structure of the cochlea, and that is the part of the work

up that

> is directly related to the hearing loss. A two vessel umbilical cord

is one

> of those immediately noticeable anomalies, that lead the doctors to

look

> for other things.

>

> All messages posted to this list are private and confidential. Each

post

> is the intellectual property of the author and therefore subject to

> copyright restrictions.

>

May 14, 2006

Hi Robin,

le has a sacral dimple also, but it's closed. She has been

checked from head to toe. le kidneys are also

fine and were checked thoroughly when she was born. They ruled out

tethered cord an was check for spinal buffia all came back

okay. The CT scan of her head showed malformation of the inner ear

bones and her cochlea appeared fine. There was

was a mention of the 7th nerve canal being misplaced. We went through

genetics twice at Chop and once at another Children's Hospital.

The doctors saw so many similarities to 22q11 deletion but the testing

didn't show that, and they recommended we do high resolution genetic

testing to rule it out, (where they test the top and the bottom of the

chromosome to see if she could be placed there) and still testing showed

nothing.

le has a rare eye disorder called 's Anomaly in her left eye

only, she has little to no vision out of the left eye, but the right eye

is fine.

She also has a sub-aortic ridge and is followed by a cardiologist. She

also has a T-5 hemi-vertebrae and mild scoliosis. Her speech was

extremely hypo nasal and she had Pharyngeal Flap Surgery done when she

was 5, and had many issues with dental cavities with her baby teeth.

The doctors were determined for several years to try and place her in a

syndrome but nothing ever showed up. They recommended that we

bring her back when she was 8 or 9 to go through the testing process

again. I am not sure if we will put her through it again, until she is

older

and wants to pursue it herself. However, I do think about it from time

to time. We have yearly checkup's on all issues but the only things

that we

concentrate on now is her hearing loss and maintaining it. That's our

story.

Take Care,

Colleen

Re: Introduction Regarding Umbilical Cord

As far as we know, our daughter's kidneys are fine. We know her cochlea

is

because it was looked at with the CT scan. However, she was born with a

sacral dimple. I've never seen anything linking hearing loss and sacral

dimple, though, and I have looked HARD. I have two slightly webbed toes

on

each foot which is supposedly linked to some anomalies, and my cousin

and

her son have Cruzon's Syndrome (probably spelled wrong) which is a

craniofacial disorder marked by flat forhead, misshapen eye(s) and/or

nose .

.. . basically the disorder causes the fontanelle (soft spot) not to

close.

It has to be surgically closed. I think I have that right. I am not

sure

if any of this relates. Any guesses, anyone?

Robin

_____

May 14, 2006

Wow. Sydney's sacral dimple is also closed and spina bifida and tethered

cord were ruled out on her, also.

We only went to one place, Children's Hospital of the Kings Daughters (CHKD)

in Chesapeake, VA, and Dr. Darrow there said the cochlea and inner ear were

fine. Just slightly enlarged vestibular aqueducts at 1.2 and 1.5 and severe

hearing loss in left ear and moderate loss in her right.

She has no other anomalies that we KNOW of, but perhaps I should have her

kidneys tested, her sight checked, . . .

>

> Hi Robin,

> le has a sacral dimple also, but it's closed. She has been

> checked from head to toe. le kidneys are also

> fine and were checked thoroughly when she was born. They ruled out

> tethered cord an was check for spinal buffia all came back

> okay. The CT scan of her head showed malformation of the inner ear

> bones and her cochlea appeared fine. There was

> was a mention of the 7th nerve canal being misplaced. We went through

> genetics twice at Chop and once at another Children's Hospital.

> The doctors saw so many similarities to 22q11 deletion but the testing

> didn't show that, and they recommended we do high resolution genetic

> testing to rule it out, (where they test the top and the bottom of the

> chromosome to see if she could be placed there) and still testing showed

> nothing.

> le has a rare eye disorder called 's Anomaly in her left eye

> only, she has little to no vision out of the left eye, but the right eye

> is fine.

> She also has a sub-aortic ridge and is followed by a cardiologist. She

> also has a T-5 hemi-vertebrae and mild scoliosis. Her speech was

> extremely hypo nasal and she had Pharyngeal Flap Surgery done when she

> was 5, and had many issues with dental cavities with her baby teeth.

> The doctors were determined for several years to try and place her in a

> syndrome but nothing ever showed up. They recommended that we

> bring her back when she was 8 or 9 to go through the testing process

> again. I am not sure if we will put her through it again, until she is

> older

> and wants to pursue it herself. However, I do think about it from time

> to time. We have yearly checkup's on all issues but the only things

> that we

> concentrate on now is her hearing loss and maintaining it. That's our

> story.

> Take Care,

> Colleen

>

> Re: Introduction Regarding Umbilical Cord

>

> As far as we know, our daughter's kidneys are fine. We know her cochlea

> is

> because it was looked at with the CT scan. However, she was born with a

> sacral dimple. I've never seen anything linking hearing loss and sacral

> dimple, though, and I have looked HARD. I have two slightly webbed toes

> on

> each foot which is supposedly linked to some anomalies, and my cousin

> and

> her son have Cruzon's Syndrome (probably spelled wrong) which is a

> craniofacial disorder marked by flat forhead, misshapen eye(s) and/or

> nose .

> . . basically the disorder causes the fontanelle (soft spot) not to

> close.

> It has to be surgically closed. I think I have that right. I am not

> sure

> if any of this relates. Any guesses, anyone?

>

> Robin

>

> _____

>

May 15, 2006

I can't add any value on the umbilical cord side of things, but I will point

out that many premies (especially those who stay in NICU for a while) can be

jaundiced which can lead so SNHL and also receive ototoxic antibiotics such

as gentamycin to fight life-threatening infections.

If you have exhausted all other avenues, that might be worth checking into.

Sheri

>Message 4

> From: " Colleen Guth " cguth@...

> Date: Sun May 14, 2006 6:32am(PDT)

>Subject: Re: Introduction Regarding Umbilical Cord

>

> >Do you remember anything concerning 's umbilical cord? Is there

> >anything on her birth record? Did you hear them say anything?

> _____

>

> I thought I would jump in here. My daughter was diagnosis

>at birth through newborn hearing screening.

> We have been through genetics testing several times and have

>never have come up with a reason or cause

> for le's hearing loss. She was a 33 week preemie and

>has other issues besides hearing loss, however

> at the time of her birth, they did mention that she had a

>two vessel umbilical cord, (usually they are three). At first

> I didn't think anything of it, but there was a lot of

>comments regarding that by the docs that were involved in her

> case in the NICU. She is now 7; however, it's always been in

>the back of my mind that the cord could have had

> a lot of do with this issues we were dealing with when she

>was born. The doctor's have stated that her loss was not due

> to being premature, they feel that all her issues would have

>been there even if she was full term.

> She was a big preemie she weighed 4.7 pounds at birth. Just

>thought I would chime in here.

> Take Care,

> Colleen

May 15, 2006

Dear Robin,

One of the features of Crouzon's syndrome is Craniosynostosis when the soft

spots close too soon, not allowing the brain to grow. They have to cut parts of

the skull out to allow room for growth. The midface is also recessed which

affects the eyes, nose and airway. Also a small and recessed jaw. These are

the main characteristics of Crouzon's syndrome. Hope this helps. Take care and

God Bless.

Natasha~Mom to~

(8/25/97) Asthma

Sierra (11/28/00) Multiple Craniosynostosis, Crouzon's Syndrome,

Syndrome, Asthma, Trach, Tracheamalacia,

Bronchomalacia, Subglottic Stenosis, Chonal Stenosis,

FTT,GERD, G-tube & Nissan, Strabismus, Profound hearing loss,

CI implanted 8/19/04. Activated 9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids/kids18/sierra.htm

www.Caringbridge.org/oh/sierra

Re: Introduction Regarding Umbilical Cord

As far as we know, our daughter's kidneys are fine. We know her cochlea is

because it was looked at with the CT scan. However, she was born with a

sacral dimple. I've never seen anything linking hearing loss and sacral

dimple, though, and I have looked HARD. I have two slightly webbed toes on

each foot which is supposedly linked to some anomalies, and my cousin and

her son have Cruzon's Syndrome (probably spelled wrong) which is a

craniofacial disorder marked by flat forhead, misshapen eye(s) and/or nose .

. . basically the disorder causes the fontanelle (soft spot) not to close.