Re: Probability of a syndrome

[Guest guest]

Hey Sanna! Nice to see you again! Your English is perfect and even

if it wasn't no one cares :~}

How is Veeti anyway? I see all done... whoohoo!

All I can say in answer to this is that very few of us have any kind

of other issues with our CF kids although there are some here who

do. I hope you can convey to her that most of these children are

perfectly normal in every way and she should not worry because the

chances of other problems are minimal. These docs really shouldn't

mess with mom's minds with this crap... sorry but if they really

knew... well... you know.

hugs and don't be a stranger!

Kori

At 09:25 AM 3/13/2006, you wrote:

>A hello from Finland!

>

>A friend of mine is 20 weeks pregnant expecting a clubfoot baby. Her

>doctor had told her there is a possibility the baby has a chromosome

>disorder or something else, and now of course my friend is terrified.

>Do you guys have any knowledge about the statistics of clubfoot

>babies? I mean what is the percentage of the babies born with clubfeet

>only, without having other problems?

>

>Argh, so hard to write in English after such a long time!:-)

>

>Sanna

>mom to Veeti (05/06/02, left clubfoot, finished FAB use in Aug 2005)

>and Lenni (07/06/05, straight feet)

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello Sanna! I know it's hard for a mom to hear that news- it

happened to us. I do know that clubfoot is one of the many markers

for Trisomy 18. My son also had a few other markers and we were told

there was a possibility for him having it. I turned down the offer

of an amnio and instead went to see a parinatologist. Is there any

way your friend can see one? Ours was able to look at him via a 3-D

ultrasound and pretty much rule out Trisomy 18 for us.

I did find some info from the CDC that said it was pretty normal for

a clubfoot baby to also have another birth defect (my son's middle

fingers are curled under) but they didn't give any statistics. I was

however able to find out that it's pretty rare for them to have a

chromosomal defect as well.

PS- your English is fine!

Jenn

>

> A hello from Finland!

>

> A friend of mine is 20 weeks pregnant expecting a clubfoot baby.

Her

> doctor had told her there is a possibility the baby has a

chromosome

> disorder or something else, and now of course my friend is

terrified.

> Do you guys have any knowledge about the statistics of clubfoot

> babies? I mean what is the percentage of the babies born with

clubfeet

> only, without having other problems?

>

> Argh, so hard to write in English after such a long time!:-)

>

> Sanna

> mom to Veeti (05/06/02, left clubfoot, finished FAB use in Aug

2005)

> and Lenni (07/06/05, straight feet)

>

[Guest guest]

I'm no help except to say I've had 3 club footed sons now and none of them had

any deformity/problem aside from the club foot. I think it's on the rare side -

I hope your friend is OK.

s.

Re: Probability of a syndrome

Hello Sanna! I know it's hard for a mom to hear that news- it

happened to us. I do know that clubfoot is one of the many markers

for Trisomy 18. My son also had a few other markers and we were told

there was a possibility for him having it. I turned down the offer

of an amnio and instead went to see a parinatologist. Is there any

way your friend can see one? Ours was able to look at him via a 3-D

ultrasound and pretty much rule out Trisomy 18 for us.

I did find some info from the CDC that said it was pretty normal for

a clubfoot baby to also have another birth defect (my son's middle

fingers are curled under) but they didn't give any statistics. I was

however able to find out that it's pretty rare for them to have a

chromosomal defect as well.

PS- your English is fine!

Jenn

>

> A hello from Finland!

>

> A friend of mine is 20 weeks pregnant expecting a clubfoot baby.

Her

> doctor had told her there is a possibility the baby has a

chromosome

> disorder or something else, and now of course my friend is

terrified.

> Do you guys have any knowledge about the statistics of clubfoot

> babies? I mean what is the percentage of the babies born with

clubfeet

> only, without having other problems?

>

> Argh, so hard to write in English after such a long time!:-)

>

> Sanna

> mom to Veeti (05/06/02, left clubfoot, finished FAB use in Aug

2005)

> and Lenni (07/06/05, straight feet)

>

[Guest guest]

Our son has a few other issues, but so far all have been correctable. That is

not to say we have had an easy 16 months, but things could be worse. Most of

the people on here have children with no other issues. I know how scary it can

be though as we were told the same thing. Our son's cerebellum was also

measuring small, and were told to expect some mental handicap. After 3 u/s, we

were told it would not catch up now, so prepare. At our 4th, it had caught up!

Doctors don't know everything. They can only base their info on statistics and

what they have been told. Tell your friend to try and relax. She will have a

beautiful baby!

11/19/04

volng8r1 wrote:

Hello Sanna! I know it's hard for a mom to hear that news- it

happened to us. I do know that clubfoot is one of the many markers

for Trisomy 18. My son also had a few other markers and we were told

there was a possibility for him having it. I turned down the offer

of an amnio and instead went to see a parinatologist. Is there any

way your friend can see one? Ours was able to look at him via a 3-D

ultrasound and pretty much rule out Trisomy 18 for us.

I did find some info from the CDC that said it was pretty normal for

a clubfoot baby to also have another birth defect (my son's middle

fingers are curled under) but they didn't give any statistics. I was

however able to find out that it's pretty rare for them to have a

chromosomal defect as well.

PS- your English is fine!

Jenn

>

> A hello from Finland!

>

> A friend of mine is 20 weeks pregnant expecting a clubfoot baby.

Her

> doctor had told her there is a possibility the baby has a

chromosome

> disorder or something else, and now of course my friend is

terrified.

> Do you guys have any knowledge about the statistics of clubfoot

> babies? I mean what is the percentage of the babies born with

clubfeet

> only, without having other problems?

>

> Argh, so hard to write in English after such a long time!:-)

>

> Sanna

> mom to Veeti (05/06/02, left clubfoot, finished FAB use in Aug

2005)

> and Lenni (07/06/05, straight feet)

>

[Guest guest]

When we went to the perinatologist and discovered 's bilateral club feet,

he stated that 90% of babies with club feet do NOT have other issues. I hope

that reassures your friend.

Carol and

Re: Probability of a syndrome

Hello Sanna! I know it's hard for a mom to hear that news- it

happened to us. I do know that clubfoot is one of the many markers

for Trisomy 18. My son also had a few other markers and we were told

there was a possibility for him having it. I turned down the offer

of an amnio and instead went to see a parinatologist. Is there any

way your friend can see one? Ours was able to look at him via a 3-D

ultrasound and pretty much rule out Trisomy 18 for us.

I did find some info from the CDC that said it was pretty normal for

a clubfoot baby to also have another birth defect (my son's middle

fingers are curled under) but they didn't give any statistics. I was

however able to find out that it's pretty rare for them to have a

chromosomal defect as well.

PS- your English is fine!

Jenn

>

> A hello from Finland!

>

> A friend of mine is 20 weeks pregnant expecting a clubfoot baby.

Her

> doctor had told her there is a possibility the baby has a

chromosome

> disorder or something else, and now of course my friend is

terrified.

> Do you guys have any knowledge about the statistics of clubfoot

> babies? I mean what is the percentage of the babies born with

clubfeet

> only, without having other problems?

>

> Argh, so hard to write in English after such a long time!:-)

>

> Sanna

> mom to Veeti (05/06/02, left clubfoot, finished FAB use in Aug

2005)

> and Lenni (07/06/05, straight feet)

>

[Guest guest]

--- Sanna Rekila wrote:

> A hello from Finland!

>

> A friend of mine is 20 weeks pregnant expecting a clubfoot baby. Her

> doctor had told her there is a possibility the baby has a chromosome

> disorder or something else, and now of course my friend is terrified.

> Do you guys have any knowledge about the statistics of clubfoot

> babies? I mean what is the percentage of the babies born with clubfeet

> only, without having other problems?

I don't know any statistics or numbers, but clubfoot can present with other

issues. Is the doctor saying it's likely or just possible? Will she getting

further testing or wait it out? Is it possible for her to get a more in depth

ultrasound?

I have one child with just a clubfoot. My last baby was born with a neural

tube defect (spina bifida), and he has bilateral clubfeet associated with the

NTD.

Clubfeet can be an indicator of something else, but I don't know the statistics

at all. It is dependent on what your friend needs to know, wants to know.

Ultrasound and other testing can only show so much. Is she going to to stress

and worry about the feet being associate with other problems? Would further

testing alleviate her stress? Would further testing cause more stress? ARe

there other reasons the doctor suspects chromosomal abnormalities? There are

often other markers that indicate problems, but like any prenatal testing,

nothing is 100% accurate.

> Argh, so hard to write in English after such a long time!:-)

And yet you do so well!! Nice to " see " you again!

Joy

Rose (1-99) http://www.geocities.com/joybelle15/rosesclubfootpage.html

Iris (2-01)

Spencer (3-03)

Grant (9-05) http://www.caringbridge.org/visit/grantphilip

__________________________________________________

[Guest guest]

So nice to see you again Kori!

Thank you for asking, Veeti is doing great. He is a lovely almost-

four-year-old. The foot looks beautiful, I think, I rarely look at it

anymore like I use to when I was worrying more about a relapse.:-)

Sanna

http://www.kampurajalka.com/veetinkuvia.htm

> >A hello from Finland!

> >

> >A friend of mine is 20 weeks pregnant expecting a clubfoot baby.

Her

> >doctor had told her there is a possibility the baby has a

chromosome

> >disorder or something else, and now of course my friend is

terrified.

> >Do you guys have any knowledge about the statistics of clubfoot

> >babies? I mean what is the percentage of the babies born with

clubfeet

> >only, without having other problems?

> >

> >Argh, so hard to write in English after such a long time!:-)

> >

> >Sanna

> >mom to Veeti (05/06/02, left clubfoot, finished FAB use in Aug

2005)

> >and Lenni (07/06/05, straight feet)

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hey Joy,

Lovely to see you too. Very good issues you pointed out. I believe the

doctors here always tell about the possibility of the baby having some

other problem as well (as they did to us too) even if everything else

looks normal in the ultrasound.

It's so hard.. you know... to know exactly how they feel, but not be

able to comfort them...

Sanna

>

> > A hello from Finland!

> >

> > A friend of mine is 20 weeks pregnant expecting a clubfoot baby.

Her

> > doctor had told her there is a possibility the baby has a

chromosome

> > disorder or something else, and now of course my friend is

terrified.

> > Do you guys have any knowledge about the statistics of clubfoot

> > babies? I mean what is the percentage of the babies born with

clubfeet

> > only, without having other problems?

>

> I don't know any statistics or numbers, but clubfoot can present

with other

> issues. Is the doctor saying it's likely or just possible? Will

she getting

> further testing or wait it out? Is it possible for her to get a

more in depth

> ultrasound?

>

> I have one child with just a clubfoot. My last baby was born with a

neural

> tube defect (spina bifida), and he has bilateral clubfeet associated

with the

> NTD.

>

> Clubfeet can be an indicator of something else, but I don't know the

statistics

> at all. It is dependent on what your friend needs to know, wants to

know.

> Ultrasound and other testing can only show so much. Is she going to

to stress

> and worry about the feet being associate with other problems? Would

further

> testing alleviate her stress? Would further testing cause more

stress? ARe

> there other reasons the doctor suspects chromosomal abnormalities?

There are

> often other markers that indicate problems, but like any prenatal

testing,

> nothing is 100% accurate.

>

> > Argh, so hard to write in English after such a long time!:-)

>

> And yet you do so well!! Nice to " see " you again!

>

> Joy

>

> Rose (1-99) http://www.geocities.com/joybelle15/rosesclubfootpage.

html

> Iris (2-01)

> Spencer (3-03)

> Grant (9-05) http://www.caringbridge.org/visit/grantphilip

>

> __________________________________________________

>