Hi there!

[Guest guest]

I just want to say 'Hi' to everyone out there. I've just found this

group after discovering at my 20 wk scan that my baby boy has

bilateral talipes. When we found out I was horrified. My husband was

great, a rock, though he told me afterwards he crumbled inside when

we were told. We'd never heard of the condition before and came to

the worst conclusion. I think it was made worse by the way we were

initially told. At the scan the young woman conducting it was going

through all the checks, saying everything was just as it should be

and we were very excited about seeing how much our little chap had

grown since the 12 wk scan. Then it came to checking his limbs, she

went very quiet and looked very concerned, she then said " ..erm,

there appears to be a problem.. " she told us that his feet were not

how they should be, and to be honest maybe I wasn't then thinking in

a rational manner, but then she said, " ..I'm going to write my

report now, you'll have to talk to a doctor who will explain your

options to you, I'll leave you both alone to let it sink in. " That

was it. My immediate thought was, 'our options', does she mean

abortion? Oh My God we're going to lose him! As you can imagine, I

was distraught. However, thank goodness for Dr Ferriman at the Leeds

General Infirmary, she was fantastic. She explained the situation

properly and explained the method used there to correct the

deformity, which is the Ponseti method. I have since seen a video

online on the method which was a case study by Dr Ponseti from 43

years ago which really set my mind at ease.

I do still sometimes have a sad moment, I think that is me being

selfish though, wanting the 'perfect' baby. Then again I know our

baby is going to be perfect, just with 'funny' feet for a bit, then

I feel really guilty about my selfishness. Does that ever go away?

Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

footballer even though he has 'dicky' feet, and I've got to go get

myself ready for my midwife appointment. I'm glad I was able to rant

a little and hope you all don't mind!!!

Joanne.

[Guest guest]

Welcome to the group!

I too am pregnant(baby #2 however, straight tootsies so far) but

wanted to say how lucky you are to know ahead of time about your

child's clubfeet so that you can do the research/etc ahead of time.

This group will become such a wonderful support for you when your

little one gets here. We did not know about our son's bcf until he

was born so we had to play " catch up " . Luckily we were directed to

some great doctors, found this wonderful website, and the whole

experience has been a wonderful learning experience. My husband and

I certainly learned more about each other and our relationship

during the treatment process.

Best wishes on the rest of your pregnancy and welcome!

kathleen

mom to david bcf 20 mo old fab 12/7

as well as future daughter edd 9/4/06

>

> I just want to say 'Hi' to everyone out there. I've just found

this

> group after discovering at my 20 wk scan that my baby boy has

> bilateral talipes. When we found out I was horrified. My husband

was

> great, a rock, though he told me afterwards he crumbled inside

when

> we were told. We'd never heard of the condition before and came to

> the worst conclusion. I think it was made worse by the way we were

> initially told. At the scan the young woman conducting it was

going

> through all the checks, saying everything was just as it should be

> and we were very excited about seeing how much our little chap had

> grown since the 12 wk scan. Then it came to checking his limbs,

she

> went very quiet and looked very concerned, she then said " ..erm,

> there appears to be a problem.. " she told us that his feet were

not

> how they should be, and to be honest maybe I wasn't then thinking

in

> a rational manner, but then she said, " ..I'm going to write my

> report now, you'll have to talk to a doctor who will explain your

> options to you, I'll leave you both alone to let it sink in. " That

> was it. My immediate thought was, 'our options', does she mean

> abortion? Oh My God we're going to lose him! As you can imagine, I

> was distraught. However, thank goodness for Dr Ferriman at the

Leeds

> General Infirmary, she was fantastic. She explained the situation

> properly and explained the method used there to correct the

> deformity, which is the Ponseti method. I have since seen a video

> online on the method which was a case study by Dr Ponseti from 43

> years ago which really set my mind at ease.

>

> I do still sometimes have a sad moment, I think that is me being

> selfish though, wanting the 'perfect' baby. Then again I know our

> baby is going to be perfect, just with 'funny' feet for a bit,

then

> I feel really guilty about my selfishness. Does that ever go away?

> Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

> footballer even though he has 'dicky' feet, and I've got to go get

> myself ready for my midwife appointment. I'm glad I was able to

rant

> a little and hope you all don't mind!!!

>

> Joanne.

>

[Guest guest]

Hi Joanne,

Sorry haven't got much time at the moment but just wanted to congratulations on

your pregnancy and finding this group.

We're from the UK too, living in Brighton and having treatment with Naomi

in Manchester. This grop is great and any questions you have just ask.

Hope to hear more from you soon

Kathy and Ethan (6.3.05, bilateral atypical clubfoot, fully corrected using the

Ponseti method)

breena_02 wrote: I just want to say 'Hi' to

everyone out there. I've just found this

group after discovering at my 20 wk scan that my baby boy has

bilateral talipes. When we found out I was horrified. My husband was

great, a rock, though he told me afterwards he crumbled inside when

we were told. We'd never heard of the condition before and came to

the worst conclusion. I think it was made worse by the way we were

initially told. At the scan the young woman conducting it was going

through all the checks, saying everything was just as it should be

and we were very excited about seeing how much our little chap had

grown since the 12 wk scan. Then it came to checking his limbs, she

went very quiet and looked very concerned, she then said " ..erm,

there appears to be a problem.. " she told us that his feet were not

how they should be, and to be honest maybe I wasn't then thinking in

a rational manner, but then she said, " ..I'm going to write my

report now, you'll have to talk to a doctor who will explain your

options to you, I'll leave you both alone to let it sink in. " That

was it. My immediate thought was, 'our options', does she mean

abortion? Oh My God we're going to lose him! As you can imagine, I

was distraught. However, thank goodness for Dr Ferriman at the Leeds

General Infirmary, she was fantastic. She explained the situation

properly and explained the method used there to correct the

deformity, which is the Ponseti method. I have since seen a video

online on the method which was a case study by Dr Ponseti from 43

years ago which really set my mind at ease.

I do still sometimes have a sad moment, I think that is me being

selfish though, wanting the 'perfect' baby. Then again I know our

baby is going to be perfect, just with 'funny' feet for a bit, then

I feel really guilty about my selfishness. Does that ever go away?

Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

footballer even though he has 'dicky' feet, and I've got to go get

myself ready for my midwife appointment. I'm glad I was able to rant

a little and hope you all don't mind!!!

Joanne.

[Guest guest]

Hi Joanne!

Glad you found your way to the group. You'll get so much great information

from all the pros on here. I think many of us went through similar situations

when our little ones were found with the clubfeet. At my scan, I was told I

could get an amniocentesis to make sure my little boy didn't have anything else

wrong with him in case I wanted to end the pregnancy. It's a horrible thing to

hear, especially when, like you said, we all want the perfect babies. However,

now that I have gone through the whole thing (Ponseti Method all the way and

currently wearing the brace) my 6 month old son has a perfect left foot (he was

born with a left clubfoot). I know it's hard to imagine going through all that

and even harder trying to " guess " just how severe the feet/foot will be when the

baby is born, but believe me it passes SOOO fast. My son's foot was on the

severe side and now no one looking at his foot would guess he had anything

wrong. I was just at an x-ray place getting an

x-ray done for his hips (the pediatrician has been on me trying to convince me

to have it done " just to be sure " nothing is wrong with the hips due to the

clubfoot - it came back normal). There were several technicians in the room and

they asked me why the doctor wanted the x-ray done. I told them it was because

my son was born with a clubfoot. They glanced at his foot and then at me like I

was crazy. They didn't see anything different about his foot. The Ponseti Method

is absolutely amazing as you'll come to see. There may be a few bumps in the

road, but we all get through them. Don't feel selfish for wanting a perfect

baby. Who doesn't? You're baby will be perfect - crooked footsies and all. Kiss

those little feet and take loads of pictures because once the treatment process

starts, you will soon forget just how crooked they were.

breena_02 wrote:

I just want to say 'Hi' to everyone out there. I've just found this

group after discovering at my 20 wk scan that my baby boy has

bilateral talipes. When we found out I was horrified. My husband was

great, a rock, though he told me afterwards he crumbled inside when

we were told. We'd never heard of the condition before and came to

the worst conclusion. I think it was made worse by the way we were

initially told. At the scan the young woman conducting it was going

through all the checks, saying everything was just as it should be

and we were very excited about seeing how much our little chap had

grown since the 12 wk scan. Then it came to checking his limbs, she

went very quiet and looked very concerned, she then said " ..erm,

there appears to be a problem.. " she told us that his feet were not

how they should be, and to be honest maybe I wasn't then thinking in

a rational manner, but then she said, " ..I'm going to write my

report now, you'll have to talk to a doctor who will explain your

options to you, I'll leave you both alone to let it sink in. " That

was it. My immediate thought was, 'our options', does she mean

abortion? Oh My God we're going to lose him! As you can imagine, I

was distraught. However, thank goodness for Dr Ferriman at the Leeds

General Infirmary, she was fantastic. She explained the situation

properly and explained the method used there to correct the

deformity, which is the Ponseti method. I have since seen a video

online on the method which was a case study by Dr Ponseti from 43

years ago which really set my mind at ease.

I do still sometimes have a sad moment, I think that is me being

selfish though, wanting the 'perfect' baby. Then again I know our

baby is going to be perfect, just with 'funny' feet for a bit, then

I feel really guilty about my selfishness. Does that ever go away?

Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

footballer even though he has 'dicky' feet, and I've got to go get

myself ready for my midwife appointment. I'm glad I was able to rant

a little and hope you all don't mind!!!

Joanne.

[Guest guest]

Hi Joanne!

I'm glad you found us here. Your feelings are totally normal so don't beat

yourself up. When I found out at my last u/s that my baby had club feet, I

cried quite a bit. I wanted a normal baby too, just one, that's all!

But no can do. He was also born with bilateral club feet. But that's all water

under the bridge now. We returned from seeing Dr. Ponseti last month and

Garrison is already wearing his FAB adn adjuted nicely to it and Everett thinks

it's pretty neat someone else in the house wears fancy shoes like he does.

Just think of " Normal " as your normal. Club feet will be your normal, your

child's normal, so when you think like that,well, your baby is perfectly normal!

He or she will still enjoy all the other normal stuff with the added convinience

that changing diapers with the bar between their legs is way easier than chaning

one with out the bar You can expect him to meet all his mile stones on

target and go on to have a normal (there's that word again!) active life on

normal looking feet.

Be sure there was nothing you could have done to prevent the cf, and it's not

your fault. It'll be a trip, but it's not all a bad trip.

Best wishes,

ee

Mother of 3 Clubfooted Sons:

- Bilateral Club Feet April 1998

Everett - Bilateral Club Feet September 2003 (FAB 14 hours a day)

Garrison - Bilateral Club Feet March 2006 (FAB 22 hours a day)

Re: Hi there!

Hi Joanne!

Glad you found your way to the group. You'll get so much great information

from all the pros on here. I think many of us went through similar situations

when our little ones were found with the clubfeet. At my scan, I was told I

could get an amniocentesis to make sure my little boy didn't have anything else

wrong with him in case I wanted to end the pregnancy. It's a horrible thing to

hear, especially when, like you said, we all want the perfect babies. However,

now that I have gone through the whole thing (Ponseti Method all the way and

currently wearing the brace) my 6 month old son has a perfect left foot (he was

born with a left clubfoot). I know it's hard to imagine going through all that

and even harder trying to " guess " just how severe the feet/foot will be when the

baby is born, but believe me it passes SOOO fast. My son's foot was on the

severe side and now no one looking at his foot would guess he had anything

wrong. I was just at an x-ray place getting an

x-ray done for his hips (the pediatrician has been on me trying to convince

me to have it done " just to be sure " nothing is wrong with the hips due to the

clubfoot - it came back normal). There were several technicians in the room and

they asked me why the doctor wanted the x-ray done. I told them it was because

my son was born with a clubfoot. They glanced at his foot and then at me like I

was crazy. They didn't see anything different about his foot. The Ponseti Method

is absolutely amazing as you'll come to see. There may be a few bumps in the

road, but we all get through them. Don't feel selfish for wanting a perfect

baby. Who doesn't? You're baby will be perfect - crooked footsies and all. Kiss

those little feet and take loads of pictures because once the treatment process

starts, you will soon forget just how crooked they were.

breena_02 wrote:

I just want to say 'Hi' to everyone out there. I've just found this

group after discovering at my 20 wk scan that my baby boy has

bilateral talipes. When we found out I was horrified. My husband was

great, a rock, though he told me afterwards he crumbled inside when

we were told. We'd never heard of the condition before and came to

the worst conclusion. I think it was made worse by the way we were

initially told. At the scan the young woman conducting it was going

through all the checks, saying everything was just as it should be

and we were very excited about seeing how much our little chap had

grown since the 12 wk scan. Then it came to checking his limbs, she

went very quiet and looked very concerned, she then said " ..erm,

there appears to be a problem.. " she told us that his feet were not

how they should be, and to be honest maybe I wasn't then thinking in

a rational manner, but then she said, " ..I'm going to write my

report now, you'll have to talk to a doctor who will explain your

options to you, I'll leave you both alone to let it sink in. " That

was it. My immediate thought was, 'our options', does she mean

abortion? Oh My God we're going to lose him! As you can imagine, I

was distraught. However, thank goodness for Dr Ferriman at the Leeds

General Infirmary, she was fantastic. She explained the situation

properly and explained the method used there to correct the

deformity, which is the Ponseti method. I have since seen a video

online on the method which was a case study by Dr Ponseti from 43

years ago which really set my mind at ease.

I do still sometimes have a sad moment, I think that is me being

selfish though, wanting the 'perfect' baby. Then again I know our

baby is going to be perfect, just with 'funny' feet for a bit, then

I feel really guilty about my selfishness. Does that ever go away?

Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

footballer even though he has 'dicky' feet, and I've got to go get

myself ready for my midwife appointment. I'm glad I was able to rant

a little and hope you all don't mind!!!

Joanne.

[Guest guest]

Welcome Joanne and congratulations on your baby boy. Our daughter,

, walked into my arms on November 15, 2004 at the age of 34

months old in China with her sweet little upside down crooked feet.

We knew she had bilateral clubfeet when we chose her, and began our

research way before we brought her home. At that time, I was only

thinking about finding the best doctor to provide the best treatment

for our daughter to give her the healthiest, pain free feet we

could. I never thought about how much the journey to correct her

feet would enrich my life personally. But I have to say, I have

loved the connection I feel to so many new friends I've met along the

way. I just wish we all lived in the same town so we could get

together often. And of course, having the priviledge for to

be treated by Dr. Ponseti and his staff has been such a gift. He is

our hero.

I have to say the journey to correct our daughter's feet has also had

humor in it. Before was treated she couldn't wear shoes

because she literally walked on the tops of her feet and her feet

went in and backwards. (I'm going to attempt to get our pictures in

an album this week so you can see what I mean, as it's hard to

imagine.) I had a lady that made her special booties in different

colors with little pretties on top so her feet would be protected and

she would feel like she could wear shoes too like the rest of us. Of

course we referred to them as her shoes not booties for her sake.

The humor comes in when I think of how many people used to follow me

in the store until they worked up enough guts to inform me that I had

her slippers on backwards. Luckily she was little enough that she

didn't get what they were saying, so I was totally humored by it.

Some people were very sweet about it, meaning to be helpful and so

I'd briefly explain the situation. However, a few people were

totally rude so I would just look at them and say, " No, actually they

are on just right. " and leave it at that. People are sooo funny!

It sounds like you have an awesome doctor and he's right the Ponseti

Method is the very best way to help your child. Good for you for

looking further into it. Unfortunately we were told by doctors that

that would not work for our daughter because she was too old and had

walked on her feet. Some doctors even said they wouldn't attempt to

treat her because they had no experience with older children. Which

was just fine with us as we wanted a doctor with experience with

older untreated children and I applaud these doctors for being

professional and knowing there limits. We found a doctor in Salt

Lake that successfully surgically treated an 8 year old boy from

Mexico with surgery that looked just like 's. Plus he had

also done other older children. He said they would need to start

with surgery on due to her being older and then some

casting. I asked if he used the Ponseti casting method and they said

yes when appropriate. (Later through some questioning I discovered

that wasn't true, he only attended one Ponseti seminar.) So we

believed them and traveled to Salt Lake in January where they wanted

to wait 6 months to do surgery so she could totally adjust to her new

environment, family, and language. Plus she was scared to death of

any medical people. We figured a couple of months to adjust would be

good, but we were concerned about waiting too long. We asked if

medically it was o.k. to wait and they said it would do no harm. She

could walk, run, jump and all with no pain. So we believed them.

After our May visit and when they kept postponing her surgery dates,

I decided we needed to go somewhere else. In all actuality them

postponing her surgery dates was a blessing as we were so thankful

they didn't do anything invasive on her feet. However, I was totally

lost and wish I had known about this group then.

That's when I found Dr. Ponseti in Iowa, found out about the group,

and we flew out there 4 days after talking to him. did so

well and we met so many new friends. My advice to you is to check

with this group about any doctors you want to go see as you'll get

great advice from everyone. The other thing is that there is a list

of questions on the web to ask any doctor that says they're Ponseti

trained to make sure they are doing the method correctly. I will

look that up and get back to you. After staying at the

Mc House in Iowa for several months I heard many stories of

doctors claiming to do the Ponseti method, but in all actuality that

wasn't true and they could not fully correct these children and ended

up coming out to see Dr. Ponseti where of course he corrected them in

a few castings. He's a miracle worker, plus there are a lot of other

doctors doing his wonderful work and doing it very well. You are off

to a great start with finding your little boy the right doctor. Just

know that he will run, walk, jump, and wear light up shoes like all

the other kids. He will be just fine, as you are treating him right

at birth. However, I know it can be hard at times. For our daughter

her treatment has been more extensive due to her age, but the

journey's been good. We are so much richer for the people we've met

through all of this.

Another thing is don't beat yourself up about your feelings in regard

to his feet being different. In all honesty when I saw 's

feet for the first time after we took her little booties off at the

hotel in China and changed her into clean clothes I was a little

shocked, however that feeling went away and I truly loved those

precious little curled feet. And the weird thing is when we were

packing for Iowa, although I was on cloud 9 to be going to Ponseti

and truly get her feet corrected, I was a little sad as I knew her

feet would never be the same once they put on that first set of

casts. Doesn't that sound silly. I quickly found someone here in

town to come over to the house before we flew out that specializes in

baby moldings to mold those precious little feet that I rubbed lotion

on everyday. I loved those little feet and I love her new ones, too!

Good luck to you!

Sincerely,

Joyce

, 01-03-02 bcf

at the age of 34 months

>

> I just want to say 'Hi' to everyone out there. I've just found this

> group after discovering at my 20 wk scan that my baby boy has

> bilateral talipes. When we found out I was horrified. My husband

was

> great, a rock, though he told me afterwards he crumbled inside when

> we were told. We'd never heard of the condition before and came to

> the worst conclusion. I think it was made worse by the way we were

> initially told. At the scan the young woman conducting it was going

> through all the checks, saying everything was just as it should be

> and we were very excited about seeing how much our little chap had

> grown since the 12 wk scan. Then it came to checking his limbs, she

> went very quiet and looked very concerned, she then said " ..erm,

> there appears to be a problem.. " she told us that his feet were not

> how they should be, and to be honest maybe I wasn't then thinking

in

> a rational manner, but then she said, " ..I'm going to write my

> report now, you'll have to talk to a doctor who will explain your

> options to you, I'll leave you both alone to let it sink in. " That

> was it. My immediate thought was, 'our options', does she mean

> abortion? Oh My God we're going to lose him! As you can imagine, I

> was distraught. However, thank goodness for Dr Ferriman at the

Leeds

> General Infirmary, she was fantastic. She explained the situation

> properly and explained the method used there to correct the

> deformity, which is the Ponseti method. I have since seen a video

> online on the method which was a case study by Dr Ponseti from 43

> years ago which really set my mind at ease.

>

> I do still sometimes have a sad moment, I think that is me being

> selfish though, wanting the 'perfect' baby. Then again I know our

> baby is going to be perfect, just with 'funny' feet for a bit, then

> I feel really guilty about my selfishness. Does that ever go away?

> Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

> footballer even though he has 'dicky' feet, and I've got to go get

> myself ready for my midwife appointment. I'm glad I was able to

rant

> a little and hope you all don't mind!!!

>

> Joanne.

>

[Guest guest]

I also wanted to add that I've put together a photo album of my son's entire

treatment process. So, if you want, I can send that to you.

breena_02 wrote: I just want to say 'Hi' to

everyone out there. I've just found this

group after discovering at my 20 wk scan that my baby boy has

bilateral talipes. When we found out I was horrified. My husband was

great, a rock, though he told me afterwards he crumbled inside when

we were told. We'd never heard of the condition before and came to

the worst conclusion. I think it was made worse by the way we were

initially told. At the scan the young woman conducting it was going

through all the checks, saying everything was just as it should be

and we were very excited about seeing how much our little chap had

grown since the 12 wk scan. Then it came to checking his limbs, she

went very quiet and looked very concerned, she then said " ..erm,

there appears to be a problem.. " she told us that his feet were not

how they should be, and to be honest maybe I wasn't then thinking in

a rational manner, but then she said, " ..I'm going to write my

report now, you'll have to talk to a doctor who will explain your

options to you, I'll leave you both alone to let it sink in. " That

was it. My immediate thought was, 'our options', does she mean

abortion? Oh My God we're going to lose him! As you can imagine, I

was distraught. However, thank goodness for Dr Ferriman at the Leeds

General Infirmary, she was fantastic. She explained the situation

properly and explained the method used there to correct the

deformity, which is the Ponseti method. I have since seen a video

online on the method which was a case study by Dr Ponseti from 43

years ago which really set my mind at ease.

I do still sometimes have a sad moment, I think that is me being

selfish though, wanting the 'perfect' baby. Then again I know our

baby is going to be perfect, just with 'funny' feet for a bit, then

I feel really guilty about my selfishness. Does that ever go away?

Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

footballer even though he has 'dicky' feet, and I've got to go get

myself ready for my midwife appointment. I'm glad I was able to rant

a little and hope you all don't mind!!!

Joanne.

[Guest guest]

Hi Joanne - welcome to the board. I think it is great that you

found this group as early as you did. We also found out about

's feet at our 20wk ultrasound but unfortunately did not

stumble onto this group until after he started treatment. It is

upsetting to hear the news that anything is " wrong " with your baby,

but I just kept telling myself how lucky we were to even be

expecting, and it was consolation that this is something that is

very easily corrected - truthfully we could have much bigger

problems! However, I think what you feel now is completely normal

and we are here to lend support when things get frustrating.

As you said, we all want the perfect baby and it is upsetting when

we are told that our baby won't be perfect...but at the end of the

day, when that little one is born, no matter how crooked his feet

are, he is perfect! could not be any more perfect - if

anyone ever tried to tell me he wasn't I would probably bite

them

Kaci ( 12/17/05, bcf, DBB 23/7)

>

> I just want to say 'Hi' to everyone out there. I've just found

this

> group after discovering at my 20 wk scan that my baby boy has

> bilateral talipes. When we found out I was horrified. My husband

was

> great, a rock, though he told me afterwards he crumbled inside

when

> we were told. We'd never heard of the condition before and came to

> the worst conclusion. I think it was made worse by the way we were

> initially told. At the scan the young woman conducting it was

going

> through all the checks, saying everything was just as it should be

> and we were very excited about seeing how much our little chap had

> grown since the 12 wk scan. Then it came to checking his limbs,

she

> went very quiet and looked very concerned, she then said " ..erm,

> there appears to be a problem.. " she told us that his feet were

not

> how they should be, and to be honest maybe I wasn't then thinking

in

> a rational manner, but then she said, " ..I'm going to write my

> report now, you'll have to talk to a doctor who will explain your

> options to you, I'll leave you both alone to let it sink in. " That

> was it. My immediate thought was, 'our options', does she mean

> abortion? Oh My God we're going to lose him! As you can imagine, I

> was distraught. However, thank goodness for Dr Ferriman at the

Leeds

> General Infirmary, she was fantastic. She explained the situation

> properly and explained the method used there to correct the

> deformity, which is the Ponseti method. I have since seen a video

> online on the method which was a case study by Dr Ponseti from 43

> years ago which really set my mind at ease.

>

> I do still sometimes have a sad moment, I think that is me being

> selfish though, wanting the 'perfect' baby. Then again I know our

> baby is going to be perfect, just with 'funny' feet for a bit,

then

> I feel really guilty about my selfishness. Does that ever go away?

> Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

> footballer even though he has 'dicky' feet, and I've got to go get

> myself ready for my midwife appointment. I'm glad I was able to

rant

> a little and hope you all don't mind!!!

>

> Joanne.

>

[Guest guest]

Welcome. I, too, found out that one of my twin boys wasn't " perfect " at my

20-21 ultrasound. They initially thought his condition was much worse with a

preliminary diagnosis of arthrogryprosis. This is basically a condition where

the joints are contracted and can be mild in only the feet and wrists, or more

serious contractures in the knees, hips, arms and shoulders causing major

physical limitations. We basically wouldn't really know until he was born. I

had so long to go that I thought I'd never make it through.

The ultrasound doctor didn't communicate the news very well to us either. At

least I didn't hear it well. She was talking about club feet and then a few

seconds later she mentioned my option to terminate the pregnancy. I thought I

would die and didn't understand at all what was happening. Terminate the

pregnancy because of club feet? What was she talking about? She left my husband

and I alone for a bit and he helped me understand what she was saying. The

doctor called me the next day (Saturday) to see how I was doing and to answer

any questions we had. She was great. So great, in fact, we made all of our

follow-up ultrasounds (too many to count due to a high risk twin pregnancy with

one twin having a birth defect - I still cringe when I hear that) with her. The

good news is that with each ultrasound we saw Evan do things that were atypical

of a serious physical condition (unclasping his fists and moving his fingers,

bending the arms, raising them over his head,

raising his legs over his head, moving all over, etc.). They also did all

kinds of tests to rule out as much as possible any mental condition that can

sometimes accompany the type of physical issues they thought he was going to

have. So, we were very optimistic that things were going to be ok. Maybe not

" perfect " , but ok and whatever the outcome we would handle it. The thing that

was the hardest for me was that I felt helpless while pregnant. I wanted to be

doing something about my little boy's condition. The docs said the most

important thing I could do was to try not to worry too much about the situation

and take very good care of myself to carry the babies as long as I possibly

could. Because if they were born too early and too small, valuable time would

be lost in treating the physical conditions Evan would have. So, that's what I

focused on and that was what I did. They were still born small and Evan still

had to wait about 3 1/2 months before treatment for

his club feet started. In the meantime, I made sure he had PT every day while

in the NICU, he wore splints 3 hours on/3 hours off and I took him to PT three

times a week thereafter until he got his casts. This kept his feet and knees

loose so the casting wouldn't be so tramatic for him.

Anyway, we got through what seemed to be the longest pregnancy ever via faith,

hope and love for our child no matter what. Also, my mom told me something that

I hung onto the entire pregnancy. God gives special babies to special families

that he knows have enough faith, hope and love to make sure they have a good and

happy life. And, he never gives us more than we can handle. I know that sounds

corny, but remember those words when you feel really down and sad. It will help

I promise.

Evan was born without complication and bilateral, atypical has club feet. He

has one really stiff knee also, but that's the extent of his physical issues. A

totally correctable situation for which we couldn't be happier. I will say,

however, that having been in the NICU for a relatively short time and

frequenting the hospital for our doctor appointments and some physical therapy

keeps things in perspective for us. Instead of the anguish I felt at one time

about the fact that I wasn't having a " perfect " baby, I feel so blessed and

fortunate because there are so many situations out there that are so much worse

than ours. I feel guilty sometimes that our situation turned out as well as it

did. Ironic, huh?

We have recently had some trouble transitioning into the braces and I, again,

sometimes feel sad that my son is going through all of this and is not " perfect "

like his brother or other babies. BUT, I continue to remind myself that it

could be so much worse and Evan is so very loved by his whole family even with

" funny " feet. Even though it's difficult, we will get through it and Evan will

be perfect in his own way regardless.

Hope this helps and it's ok to feel sad, mad, cheated, whatever sometimes. As

long as, in the long run, you try and remember how much worse it could be.

Jennie

breena_02 wrote:

I just want to say 'Hi' to everyone out there. I've just found this

group after discovering at my 20 wk scan that my baby boy has

bilateral talipes. When we found out I was horrified. My husband was

great, a rock, though he told me afterwards he crumbled inside when

we were told. We'd never heard of the condition before and came to

the worst conclusion. I think it was made worse by the way we were

initially told. At the scan the young woman conducting it was going

through all the checks, saying everything was just as it should be

and we were very excited about seeing how much our little chap had

grown since the 12 wk scan. Then it came to checking his limbs, she

went very quiet and looked very concerned, she then said " ..erm,

there appears to be a problem.. " she told us that his feet were not

how they should be, and to be honest maybe I wasn't then thinking in

a rational manner, but then she said, " ..I'm going to write my

report now, you'll have to talk to a doctor who will explain your

options to you, I'll leave you both alone to let it sink in. " That

was it. My immediate thought was, 'our options', does she mean

abortion? Oh My God we're going to lose him! As you can imagine, I

was distraught. However, thank goodness for Dr Ferriman at the Leeds

General Infirmary, she was fantastic. She explained the situation

properly and explained the method used there to correct the

deformity, which is the Ponseti method. I have since seen a video

online on the method which was a case study by Dr Ponseti from 43

years ago which really set my mind at ease.

I do still sometimes have a sad moment, I think that is me being

selfish though, wanting the 'perfect' baby. Then again I know our

baby is going to be perfect, just with 'funny' feet for a bit, then

I feel really guilty about my selfishness. Does that ever go away?

Anyway, I'm 26 wks tomorrow, baby is kicking like a Premiership

footballer even though he has 'dicky' feet, and I've got to go get

myself ready for my midwife appointment. I'm glad I was able to rant

a little and hope you all don't mind!!!

Joanne.