RE: Wanting to know if Club Feet are associated with other abnormalities

[Guest guest]

I have 2 kids with spina bidida, and both had club feet.

DeeDee

" meglynn001 " wrote:

> We finally confimed today that our baby has bi lateral club feet.nbsp;

>After finding that out I was sent to see a genetic counsler.nbsp; I was

>wondering how often other babies who had bi-lateral CF also had other

>major abnormalities?nbsp; Our ultrasound did not reveal anything and they

>offer an amnio.nbsp; I just want to be prepared.nbsp; Thank you in advance.

>

>

>

>  

>

>

[Guest guest]

I have 2 kids with spina bidida, and both had club feet.

DeeDee

" meglynn001 " wrote:

> We finally confimed today that our baby has bi lateral club feet.nbsp;

>After finding that out I was sent to see a genetic counsler.nbsp; I was

>wondering how often other babies who had bi-lateral CF also had other

>major abnormalities?nbsp; Our ultrasound did not reveal anything and they

>offer an amnio.nbsp; I just want to be prepared.nbsp; Thank you in advance.

>

>

>

>  

>

>

[Guest guest]

I understand; when we found out about our son's

clubfoot they also saw a choroid plexus cyst and said

those were two markers for Down's, or other disorders.

The high risk doctor tried to convince me to get an

amnio, but I wanted to think about it overnight. I

saw a different high risk doctor the next day who my

OB recommended and he felt the risk of me miscarrying

from the amnio was greater than my baby having a

serious problem other than his clubfoot. I trusted

him and my instincts, and sure enough everything

turned out fine.

Amy

--- meglynn001 wrote:

> We finally confimed today that our baby has bi

> lateral club feet.

> After finding that out I was sent to see a genetic

> counsler. I was

> wondering how often other babies who had bi-lateral

> CF also had other

> major abnormalities? Our ultrasound did not reveal

> anything and they

> offer an amnio. I just want to be prepared. Thank

> you in advance.

>

>

>

>

__________________________________

Start your day with Yahoo! - Make it your home page!

http://www.yahoo.com/r/hs

[Guest guest]

Generally speaking it is most common for children to be born with

clubfoot and no other problems. If there are other abnormalities they

are not necessarily tied to the clubfoot. Babies with Spina bifida do

sometimes have bilateral clubfoot, therefore when doctors see this they

will generally recommend further testing to try to rule out SB. When

my doctor could see unilateral clubfoot, but could not get a good image

of my son's other foot, he also suggested amnio but was satisfied with

the results of the triple test and additional ultrasounds. My son

turned out to just have the one clubfoot and no other problems.

HTH,

>

> We finally confimed today that our baby has bi lateral club feet.

> After finding that out I was sent to see a genetic counsler. I was

> wondering how often other babies who had bi-lateral CF also had other

> major abnormalities? Our ultrasound did not reveal anything and they

> offer an amnio. I just want to be prepared. Thank you in advance.

>

[Guest guest]

DeeDee,

They can spot spinal bifida on U/S right? My mom's first child was

born with it and unfortunately did not survive, this was a long time

ago, and before U/S. When I told my doc this, they spent quite a bit

of time examining Graces spine. They never did see the cf though and

I went for 6 ultrasounds (she also had one cystic kidney). Just

wondering when they can spot this on U/S and then what happens next.

& Grace

>

> > We finally confimed today that our baby has bi lateral club

feet.nbsp;

> >After finding that out I was sent to see a genetic counsler.nbsp;

I was

> >wondering how often other babies who had bi-lateral CF also had

other

> >major abnormalities?nbsp; Our ultrasound did not reveal anything

and they

> >offer an amnio.nbsp; I just want to be prepared.nbsp; Thank you in

advance.

> >

> >

> >

> >  

> >

> >

[Guest guest]

--- meglynn001 wrote:

> We finally confimed today that our baby has bi lateral club feet.

> After finding that out I was sent to see a genetic counsler. I was

> wondering how often other babies who had bi-lateral CF also had other

> major abnormalities? Our ultrasound did not reveal anything and they

> offer an amnio. I just want to be prepared. Thank you in advance.

Spina bifida can be associated with clubfeet. My 4 week old son has spina

bifida and bilateral clubfeet. Spina bifida is more likely to be confirmed by

u/s rather than amnio, though. Did you have a level 2 u/s? If not, perhaps

you could request one. I don't think an amnio would be necessary if clubfeet

are the only abnormality you are seeing.

That being said, though, I think clubfeet usually present without other major

abnormalities. My oldest was born with a clubfoot and that was it.

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

__________________________________

Yahoo! FareChase: Search multiple travel sites in one click.

http://farechase.yahoo.com

[Guest guest]

--- dee15mom@... wrote:

> I have 2 kids with spina bidida, and both had club feet.

DeeDee,

I have a newborn son who has sb and bilateral clubfeet. May I ask how your

children's feet were treated and how they responded to that treatment?

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

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

--- wrote:

> DeeDee,

>

> They can spot spinal bifida on U/S right? My mom's first child was

> born with it and unfortunately did not survive, this was a long time

> ago, and before U/S. When I told my doc this, they spent quite a bit

> of time examining Graces spine. They never did see the cf though and

> I went for 6 ultrasounds (she also had one cystic kidney). Just

> wondering when they can spot this on U/S and then what happens next.

Ultrasound is the most effective way of diagnosing spina bifida in utero. It

is usually spotted on u/s at the 18-20 week screening u/s. My son's was

detected around 20-something weeks, and we were referred to a perinatologist.

We had a level 2 u/s to confirm the findings and had several of those

throughout the pregnancy.

If you have more questions, I'd be pleased to answer them!

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

__________________________________

Start your day with Yahoo! - Make it your home page!

http://www.yahoo.com/r/hs

[Guest guest]

Thanks for the response Joy. I do have a couple more questions if you

don't mind...first, how is Grant doing and what kind of treatment is

he receiving for sb. Also wanted to know if it is genetic and or

heritary. I have always wondered whether my mom having a baby born

with sb had something to do with Grace being born with cf.

Hope little Grant is doing well!

& Grace

>

> > DeeDee,

> >

> > They can spot spinal bifida on U/S right? My mom's first child

was

> > born with it and unfortunately did not survive, this was a long

time

> > ago, and before U/S. When I told my doc this, they spent quite a

bit

> > of time examining Graces spine. They never did see the cf though

and

> > I went for 6 ultrasounds (she also had one cystic kidney). Just

> > wondering when they can spot this on U/S and then what happens

next.

>

> Ultrasound is the most effective way of diagnosing spina bifida in

utero. It

> is usually spotted on u/s at the 18-20 week screening u/s. My

son's was

> detected around 20-something weeks, and we were referred to a

perinatologist.

> We had a level 2 u/s to confirm the findings and had several of

those

> throughout the pregnancy.

>

> If you have more questions, I'd be pleased to answer them!

>

> 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

>

>

>

> __________________________________

> Start your day with Yahoo! - Make it your home page!

> http://www.yahoo.com/r/hs

>

[Guest guest]

I don't think there are any readily available statistics on what

percentage of bilateral clubfoot babies are born with other major

abnormalities. What I have read frequently (mostly on this board) is

that the majority of babies with clubfoot do not have other birth

defects. I was in your same shoes with my daughter. She was diagnosed

with bilateral clubfeet at the 20 week ultrasound. They couldn't find

any other problems on ultrasound. We went for a second diagnostic

ultrasound, which also showed no other issues. We didn't do an amnio,

since I was too scared to do it, but I know a lot of people do. It can

rule out a lot of worry, however, not all of it.

When they find cfeet on u/s they usually do a much more thorough

inspection of other body parts/organs, since cfeet can be a *soft* sign

for more major issues. However, they should be able to detect most

cases of spina bifida via ultrasound. I was told that the amnio is 99%

accurate in detecting it, as well as downs syndrome. The ultrasound

isn't as accurate as this, but if they are REALLY looking for problems,

it's my sense that they are much less likely to miss them. Make sure

you request a higher level ultrsound and schedule it before baby gets

too large inside you (they can see everything better that way).

To share a postive story, Sophia, my daughter, is now almost 2 and

clubfeet is her only issue. I wish the same good fortune for you.

Best of luck,

Chris

mom to Chloe (almost 4) and Sophia (almost 2 with bi cf)

[Guest guest]

Hi,

I just wanted to give you a word of encouragement. I know how

overwhelming this news must be .. it's normal for you to be worried.

Let me tell you, though, that in my years of experience with this

now, I have known dozens of parents who have been scared after

ultrasound diagnosis that there " Might Be Something Else Wrong " and

in the great majority of cases there isn't. Although clubfoot can be

associated with other abnormalities, it is very often isolated, with

the baby healthy in every other way.

My daughter was born with unilateral left clubfoot, which has been

corrected with the Ponseti method. She is now 5. She takes ballet,

runs, rides a bike, tiptoes, climbs, goes barefoot.. No one can tell

anything was ever wrong. She has excellent function. Her foot is

normal looking and hard to distinguish as different from her other.

She is a normal little girl, active, capable and completely fine.

Many, many of us don't know of other cases of it in our families;

that doesn't make it any worse or different. It is a congenital

defect (a defect appearing at birth) with unknown cause, due to a

combination of genetic and/or environmental factors. No one knows

what triggers it. My advice, as someone who worried A LOT, is not to

spend much time wondering 'how it happened', what event or what

you did to 'cause it'. There's no one or one thing to blame. It's

just something that happens, like many things in life, and you do

what you need to do to help your baby.

What's fortunate is that, as birth defects go, it's a very

correctable one. A clubfoot is still a foot with the parts there..

it's just twisted, into a sort of three dimensional puzzle, but one

which can be " undone " by a doctor who knows what he is doing. It's

very important to get a skilled doctor to accomplish it .. so throw

yourself into that effort and search.. and be optimistic! Your baby

is being born at an excellent time, when great progress has been made

in clubfoot treatment, in recognition and understanding of the value

of the Ponseti method (which you can read about in the link below).

Please don't let dread or worry sap the joy out of your pregnancy and

early days with your baby. The chances are good that there's nothing

more than the feet to be dealing with. You will be strong, and your

baby will be OK. It really isn't that bad. I know that's hard to

imagine now, but in a few months/years, you'll be here saying the

same to other parents.

Please check out this website, if you haven't already.. and stick

around here, for continued support..

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

I hope this helps. Take care,

and Claire

6/29/00, left cf

corrected

>

> We finally confimed today that our baby has bi lateral club feet.

> After finding that out I was sent to see a genetic counsler. I was

> wondering how often other babies who had bi-lateral CF also had

other

> major abnormalities? Our ultrasound did not reveal anything and

they

> offer an amnio. I just want to be prepared. Thank you in advance.

>

[Guest guest]

Joy,

It was so nice to see your post.. how is Grant doing with the casts? I

know it must be hard to see him casted, even having gone through it

before with Rose! I saw the pictures.. he is absolutely beautiful!! I

hope everything is going OK.. I've been thinking of you and so eager to

hear how things are and what steps are next.

Do you have a date to take Rose and Grant to Iowa any time soon?

with best wishes and hugs to all of you,

Fondly,

and Claire

[Guest guest]

Congratulations on your upcoming baby!and welcome to the group. My son

was born with bilateral clubfeet-total surprise. He also was affected

by amniotic banding syndrome-apparently there is a correlation with

the two(typically the abs is the cause for the clubfeet due to lack of

amniotic fluid). He was born with a partial right thumb, a band around

his index finger, and missing his right toe on his right foot. His

other toes are short and squat. Neither was found via ultrasound. I

don't want to scare you, just wanted to let you know a bit about our

story. is soon to be 14 months and a rough/tough boy's boy. His

favorite activity is tackling his Mommy. We had all prenatal tests-

they all came back normal, I had a normal pregnancy-no morning

sickness, and delivered 2 weeks late. Enjoy your pregnancy. If I had

it to do all over again(and will for future pregnancies), I would of

asked for one more U/S. I only had a 20 week U/S. I know it would not

of changed anything-but it would of been nice to be prepared-ie

doctors lined up/interviewed, treatment plan established-can you tell

I like to be organized. We were fortunate to find great doctors for

both of 's conditions and he is certainly a joy in our lives.

has taught me so much-isn't the parent supposed to be the

teacher!!

Take care and keep us updated!

kathleen

mom to bcf fab 12/7

>

> We finally confimed today that our baby has bi lateral club feet.

> After finding that out I was sent to see a genetic counsler. I was

> wondering how often other babies who had bi-lateral CF also had

other

> major abnormalities? Our ultrasound did not reveal anything and

they

> offer an amnio. I just want to be prepared. Thank you in advance.

>

[Guest guest]

I wholeheartedly second what you wrote, . We found out on an 18 wk

ultrasound that our daughter had a left clubfoot. The radiologist wanted us

to schedule an amnio right away to see if anything else was wrong. Instead,

we scheduled a consult with a genetic counselor & a very detailed u/s with

a perinatalogist. Nothing else abnormal showed up (including spina bifida).

We decided to forgo the amnio, because the risks of miscarriage were much

higher than the risk of something else being wrong. The perinatalogist did

monitor the baby's growth with frequent ultrasounds after that. But everything

was just fine.

I let myself worry way to much about whether something else was wrong.

We didn't really know for sure until she was born (very healthy, w/left cf).

But I wish I would have let myself relax & enjoy the pregnancy more. Try

to do that!

A final word of caution. Be careful interpreting the results of medical studies

that you might come across re. clubfoot. Some of them quote rates of

other complications present w/clubfoot that are much higher than is true

in the general population. The genetic counselor said that the sample

populations

for these studies are often skewed such that more complications will show

up.

Congrats on your pregnancy and prayers as you make decisions re. prenatal

testing. We're all here to support you.

Take care,

Kim

Lily, 3/28/05, lcf, P/M FAB 16 hours

Tessa, 7/17/02

and Claire wrote:

Hi,

I just wanted to give you a word of encouragement. I know how

overwhelming this news must be .. it's normal for you to be worried.

Let me tell you, though, that in my years of experience with this

now, I have known dozens of parents who have been scared after

ultrasound diagnosis that there " Might Be Something Else Wrong " and

in the great majority of cases there isn't. Although clubfoot can be

associated with other abnormalities, it is very often isolated, with

the baby healthy in every other way.

My daughter was born with unilateral left clubfoot, which has been

corrected with the Ponseti method. She is now 5. She takes ballet,

runs, rides a bike, tiptoes, climbs, goes barefoot.. No one can tell

anything was ever wrong. She has excellent function. Her foot is

normal looking and hard to distinguish as different from her other.

She is a normal little girl, active, capable and completely fine.

Many, many of us don't know of other cases of it in our families;

that doesn't make it any worse or different. It is a congenital

defect (a defect appearing at birth) with unknown cause, due to a

combination of genetic and/or environmental factors. No one knows

what triggers it. My advice, as someone who worried A LOT, is not to

spend much time wondering 'how it happened', what event or what

you did to 'cause it'. There's no one or one thing to blame. It's

just something that happens, like many things in life, and you do

what you need to do to help your baby.

What's fortunate is that, as birth defects go, it's a very

correctable one. A clubfoot is still a foot with the parts there..

it's just twisted, into a sort of three dimensional puzzle, but one

which can be " undone " by a doctor who knows what he is doing. It's

very important to get a skilled doctor to accomplish it .. so throw

yourself into that effort and search.. and be optimistic! Your baby

is being born at an excellent time, when great progress has been made

in clubfoot treatment, in recognition and understanding of the value

of the Ponseti method (which you can read about in the link below).

Please don't let dread or worry sap the joy out of your pregnancy and

early days with your baby. The chances are good that there's nothing

more than the feet to be dealing with. You will be strong, and your

baby will be OK. It really isn't that bad. I know that's hard to

imagine now, but in a few months/years, you'll be here saying the

same to other parents.

Please check out this website, if you haven't already.. and stick

around here, for continued support..

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

I hope this helps. Take care,

and Claire

6/29/00, left cf

corrected

>

> We finally confimed today that our baby has bi lateral club feet.

> After finding that out I was sent to see a genetic counsler. I was

> wondering how often other babies who had bi-lateral CF also had

other

> major abnormalities? Our ultrasound did not reveal anything and

they

> offer an amnio. I just want to be prepared. Thank you in advance.

>

[Guest guest]

I had 13 ultrasounds when I was pregnant with my son who has spina bifida. It

was a twin pregnancy so they watched us very close. They never seen his spina

bifida. So we had a surprise at birth, his twin does not have it. I sure wish I

had know prior to birth. Things would have been done so much different, which

would have caused him less nerve damage. There are really advantage to know

prior to birth. My next pregnancy I did choose to have a amino, and the baby was

fine.

DeeDee

" ck_cz " wrote:

> I don't think there are any readily available statistics on what

>percentage of bilateral clubfoot babies are born with other major

>abnormalities.nbsp; What I have read frequently (mostly on this board) is

>that the majority of babies with clubfoot do not have other birth

>defects.nbsp; I was in your same shoes with my daughter.nbsp; She was diagnosed

>with bilateral clubfeet at the 20 week ultrasound.nbsp; They couldn't find

>any other problems on ultrasound.nbsp; We went for a second diagnostic

>ultrasound, which also showed no other issues.nbsp; We didn't do an amnio,

>since I was too scared to do it, but I know a lot of people do.nbsp; It can

>rule out a lot of worry, however, not all of it.nbsp;

>

>When they find cfeet on u/s they usually do a much more thorough

>inspection of other body parts/organs, since cfeet can be a *soft* sign

>for more major issues.nbsp; However, they should be able to detect most

>cases of spina bifida via ultrasound.nbsp; I was told that the amnio is 99%

>accurate in detecting it, as well as downs syndrome.nbsp; The ultrasound

>isn't as accurate as this, but if they are REALLY looking for problems,

>it's my sense that they are much less likely to miss them.nbsp; Make sure

>you request a higher level ultrsound and schedule it before baby gets

>too large inside you (they can see everything better that way).

>

>To share a postive story, Sophia, my daughter, is now almost 2 and

>clubfeet is her only issue.nbsp; I wish the same good fortune for you.nbsp;

>

>Best of luck,nbsp;nbsp;

>

>Chris

>mom to Chloe (almost 4) and Sophia (almost 2 with bi cf)

>

>

>

>

>  

>

>

[Guest guest]

>

>

> My daughter was born with unilateral left clubfoot, which has been

> corrected with the Ponseti method. She is now 5. She... tiptoes,

I think this is very interesting. I was just reading a discussion on a

different board about tiptoeing, and how they thought it was not

possible for people with CF. One was surgically corrected, the other a

parent of a surgically corrected child. Hmmmm....

[Guest guest]

,

I wouldn't read too much into that one, I'm a surgical clubfooter

myself and I can tiptoe, no problem. Now putting my heel down when I

walk up the steps? Forget about it.

> >

>

> >

> > My daughter was born with unilateral left clubfoot, which has been

> > corrected with the Ponseti method. She is now 5. She... tiptoes,

>

>

> I think this is very interesting. I was just reading a discussion on a

> different board about tiptoeing, and how they thought it was not

> possible for people with CF. One was surgically corrected, the other a

> parent of a surgically corrected child. Hmmmm....

>

[Guest guest]

--- wrote:

> Thanks for the response Joy. I do have a couple more questions if you

> don't mind...first, how is Grant doing and what kind of treatment is

> he receiving for sb. Also wanted to know if it is genetic and or

> heritary. I have always wondered whether my mom having a baby born

> with sb had something to do with Grace being born with cf.

>

> Hope little Grant is doing well!

Hi, ,

To answer your questions... Grant is doing well! At about 5-6 hours after

birth Grant had surgery to close the opening on his back and then a VP shunt

was placed. He will be having a surgery in January to repair a urethral

stricture. He has been having casts about once a week to repair the clubfeet.

It's possible, and likely, that Grant will face a variety of surgeries to

repair, correct a few different things in the course of his life.

I believe spina bifida can be genetic and hereditary. In our case, we have

been told it's multi-factorial, meaning there were a variety of reasons it

occured, I guess. We brought up that Rose was born with clubfoot and a sacral

dimple and wondered if there was a connection. We were basically told there

could be a connection, but there've been no studies to prove it, so no. I

believe there is.

Make sure you are taking a folic acid supplement every day. I was taking folic

acid prior to getting pregnant, but I don't assimilate it well. I think I

would be especially diligent and possibly take more than the recommended amount

if I were you considering there has been sb in the family. Perhaps you could

address this with your doctor or ask to speak to a genetic counselor.

I hope I answered your questions okay! I'm certainly willing to answer more if

you have them.

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

__________________________________

Start your day with Yahoo! - Make it your home page!

http://www.yahoo.com/r/hs

[Guest guest]

--- and Claire wrote:

> Joy,

>

> It was so nice to see your post.. how is Grant doing with the casts? I

> know it must be hard to see him casted, even having gone through it

> before with Rose! I saw the pictures.. he is absolutely beautiful!! I

> hope everything is going OK.. I've been thinking of you and so eager to

> hear how things are and what steps are next.

Thank you, ! Grant is doing so well with the casts. Yesterday, he slept

through the cast saw and the whole procedure. LOL His skin, which is

insensate, has been holding up very well, and we're seeing a lot of correction

in the right foot. Not so much in the left, though. It is very stiff and

there are issues with his knee, also. I am finding the casting easier now than

those first two. I really miss his little legs, though.

Yesterday, Grant had a VCUG, and we were told he'll need surgery to correct a

urethral stricture. He'll have that repaired sometime in January.

> Do you have a date to take Rose and Grant to Iowa any time soon?

> with best wishes and hugs to all of you,

I need to set the date. Dr. Ponseti said I could bring them anytime. Maybe

the second week of November? I need to get it figured out and soon!

Thanks for asking. I have a picture of the four kids I need to share. It's

pretty sweet.

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

__________________________________

Yahoo! FareChase: Search multiple travel sites in one click.

http://farechase.yahoo.com

[Guest guest]

--- New wrote:

> I let myself worry way to much about whether something else was wrong.

> We didn't really know for sure until she was born (very healthy, w/left cf).

> But I wish I would have let myself relax & enjoy the pregnancy more. Try

> to do that!

I agree this is good advice, to enjoy the pregnancy. My situation was a bit

different (my son was diagnosed with spina bifida), but it was really hard

dealing with the unknowns. When I decided to take each day for what it was

(some were bad, some were good) and just enjoy being pregnant, it was the best

thing I could have done. When I made that shift, I really, truly enjoyed the

pregnancy, and when Grant was born I was so thrilled to see him rather than his

" defects " .

You know your baby has clubfeet. That's all you need to know at this point

(other than treatment options, etc). You've explored other avenues of

determining if anything else is wrong. So far, it looks as if nothing is. You

aren't guaranteed an outcome, but worrying about it isn't going to fix it,

change it, or make you feel better. Worrying is okay (we all do that!), but

letting it consume your day-to-day or destroy your happiness is not okay.

I third that, enjoy the rest of your pregnancy.

> A final word of caution. Be careful interpreting the results of medical

> studies

> that you might come across re. clubfoot. Some of them quote rates of

> other complications present w/clubfoot that are much higher than is true

> in the general population. The genetic counselor said that the sample

> populations

> for these studies are often skewed such that more complications will show

> up.

I found researching to be therapeutic and discouraging and encouraging all at

the same time! You definitely have to be prepared to not believe everything

you come across.

> Congrats on your pregnancy and prayers as you make decisions re. prenatal

> testing. We're all here to support you.

I second what Kim is saying. I want to add that we chose to have an

amniocentisis after we were told about the spina bifida. We really had to

weigh our risks and benefits, and when it came down to it, it was the right

choice for us to have that information (whether he had chromosomal

abnormalities).

Best wishes to you.

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

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

--- leenernd wrote:

> Congratulations on your upcoming baby!and welcome to the group. My son

> was born with bilateral clubfeet-total surprise. He also was affected

> by amniotic banding syndrome-apparently there is a correlation with

> the two(typically the abs is the cause for the clubfeet due to lack of

> amniotic fluid). He was born with a partial right thumb, a band around

> his index finger, and missing his right toe on his right foot. His

> other toes are short and squat. Neither was found via ultrasound. I

> don't want to scare you, just wanted to let you know a bit about our

> story. is soon to be 14 months and a rough/tough boy's boy. His

> favorite activity is tackling his Mommy. We had all prenatal tests-

> they all came back normal, I had a normal pregnancy-no morning

> sickness, and delivered 2 weeks late. Enjoy your pregnancy. If I had

> it to do all over again(and will for future pregnancies), I would of

> asked for one more U/S. I only had a 20 week U/S. I know it would not

> of changed anything-but it would of been nice to be prepared-ie

> doctors lined up/interviewed, treatment plan established-can you tell

> I like to be organized. We were fortunate to find great doctors for

> both of 's conditions and he is certainly a joy in our lives.

> has taught me so much-isn't the parent supposed to be the

> teacher!!

Kathleen,

It sounds like is an amazing little boy!

I just wanted to respond to your last comments about u/s. When i was pregnant

with Rose we chose not to have the 20 week u/s, but we did have one later

because of high blood pressure and suspected IUGR. We never saw the clubfoot.

I think if the amniotic banding wasn't caught on your 20 week u/s it is very

unlikely that it would have been seen on a later one. The later the u/s,

usually, the less accurate it is and the less they are able to see.

Nonetheless, I understand why you would have wanted to more prepared. This

time with Grant we did know beforehand, and there was a lot to prepare for.

I'm still glad we didn't find out about Rose's clubfoot beforehand, but I must

admit I'm very glad we found out about Grant's spina bifida. There was a lot to

prepare for with that! It sounds like there's quite a few things to set up

with the abs, and I'm sorry they didn't catch it on u/s. Unfortunately, u/s

isn't perfect.

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

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

Thanks Joy-

I am glad to hear Grant is doing well-I check out the website you

have started for him-its wonderful! It's weird how different ob's

treat their patients-my sil had a total of 6 u/s with both her

pregnancies-so you know how it can be, family keep asking-why are

you only having one?!? We have never nor would I ask to review the

u/s to see if either condition was present at 20 weeks-it wouldn't

change anything. Thanks again for the insight! Babies are truly

little miracles. Grant is really a beautiful little boy!

Take care,

Kathleen

>

> > Congratulations on your upcoming baby!and welcome to the group.

My son

> > was born with bilateral clubfeet-total surprise. He also was

affected

> > by amniotic banding syndrome-apparently there is a correlation

with

> > the two(typically the abs is the cause for the clubfeet due to

lack of

> > amniotic fluid). He was born with a partial right thumb, a band

around

> > his index finger, and missing his right toe on his right foot.

His

> > other toes are short and squat. Neither was found via

ultrasound. I

> > don't want to scare you, just wanted to let you know a bit about

our

> > story. is soon to be 14 months and a rough/tough boy's

boy. His

> > favorite activity is tackling his Mommy. We had all prenatal

tests-

> > they all came back normal, I had a normal pregnancy-no morning

> > sickness, and delivered 2 weeks late. Enjoy your pregnancy. If I

had

> > it to do all over again(and will for future pregnancies), I

would of

> > asked for one more U/S. I only had a 20 week U/S. I know it

would not

> > of changed anything-but it would of been nice to be prepared-ie

> > doctors lined up/interviewed, treatment plan established-can you

tell

> > I like to be organized. We were fortunate to find great doctors

for

> > both of 's conditions and he is certainly a joy in our

lives.

> > has taught me so much-isn't the parent supposed to be the

> > teacher!!

>

> Kathleen,

> It sounds like is an amazing little boy!

>

> I just wanted to respond to your last comments about u/s. When i

was pregnant

> with Rose we chose not to have the 20 week u/s, but we did have

one later

> because of high blood pressure and suspected IUGR. We never saw

the clubfoot.

> I think if the amniotic banding wasn't caught on your 20 week u/s

it is very

> unlikely that it would have been seen on a later one. The later

the u/s,

> usually, the less accurate it is and the less they are able to see.

> Nonetheless, I understand why you would have wanted to more

prepared. This

> time with Grant we did know beforehand, and there was a lot to

prepare for.

>

> I'm still glad we didn't find out about Rose's clubfoot

beforehand, but I must

> admit I'm very glad we found out about Grant's spina bifida. There

was a lot to

> prepare for with that! It sounds like there's quite a few things

to set up

> with the abs, and I'm sorry they didn't catch it on u/s.

Unfortunately, u/s

> isn't perfect.

>

> 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

>

>

>

>

> __________________________________

> Yahoo! Mail - PC Magazine Editors' Choice 2005

> http://mail.yahoo.com

>

[Guest guest]

I just thought it was interesting. They were kind of saying that was

pretty much common among CF people, and they couldn't tiptoe. I didn't

know either way, Ava's just mastering walking let alone tiptoes yet!

But then it just jumped out at me when Theresa said Claire tiptoes. So

why can't you put your heel down when you go up steps?

> > >

> >

> > >

> > > My daughter was born with unilateral left clubfoot, which has been

> > > corrected with the Ponseti method. She is now 5. She... tiptoes,

> >

> >

> > I think this is very interesting. I was just reading a discussion on a

> > different board about tiptoeing, and how they thought it was not

> > possible for people with CF. One was surgically corrected, the other a

> > parent of a surgically corrected child. Hmmmm....

> >

>

[Guest guest]

My son tiptoes and he is 2.5 born with bilateral. Our Physio asked me to

practise with him so he just goes up on tiptoes when I say to now. He is

being treated Ponseti way.

Rach, Steve & Connor

-- Re: Wanting to know if Club Feet are

associated with other abnormalities

I just thought it was interesting. They were kind of saying that was

pretty much common among CF people, and they couldn't tiptoe. I didn't

know either way, Ava's just mastering walking let alone tiptoes yet!

But then it just jumped out at me when Theresa said Claire tiptoes. So

why can't you put your heel down when you go up steps?

> > >

> >

> > >

> > > My daughter was born with unilateral left clubfoot, which has been

> > > corrected with the Ponseti method. She is now 5. She... tiptoes,

> >

> >

> > I think this is very interesting. I was just reading a discussion on a

> > different board about tiptoeing, and how they thought it was not

> > possible for people with CF. One was surgically corrected, the other a

> > parent of a surgically corrected child. Hmmmm....

> >

>

[Guest guest]

I can if I really concentrate on putting my heel all the way down, but

just in general walking up the steps if I am not thinking about it

(which I generally don't) my heel stays about 1/2 inch off the stair

tread - my achilles just isn't long enough. I have about 1-2 degrees

of dorsiflexion, maybe 5 on a good day.

> > > >

> > >

> > > >

> > > > My daughter was born with unilateral left clubfoot, which has

been

> > > > corrected with the Ponseti method. She is now 5. She... tiptoes,

> > >

> > >

> > > I think this is very interesting. I was just reading a

discussion on a

> > > different board about tiptoeing, and how they thought it was not

> > > possible for people with CF. One was surgically corrected, the

other a

> > > parent of a surgically corrected child. Hmmmm....

> > >

> >

>