Re: baby diagnosed with bilateral clubfoot

[Guest guest]

Hi Reid and welcome,

You have come to a great place. My suggestion is to find your self a

Ponseti Trained doctor and ask lots of questions. I am sure you will

get lots of great advice.

You can expect to have a happy healthy baby and spend the first week

or so enjoying your new family. Then head to your doctor for your

first set of casts. They slowly bring the feet down and around over

the next several casts (one a week for 4-7 weeks) until the feet are

over corrected to 70 degrees. Then most children need an Achilles

tendon cut, which is done in office. Then a 3 week cast while that

heals. Then into the FAB (foot abduction brace), which are

basically, shoes attached to a bar. That's it, the FAB starts at 23

hrs a day and is decreased down slowly to just bed time then at age 4

is done.

Here are some great web sites you can check out. I am sure you will

have lots of questions so feel free to post them.

Dr Ponseti's site:

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

http://www.global-help.org/publications/ponseti-cf.html

A list of multiple links for Ponseti Method:

http://pages.ivillage.com/ponseti_links/

A list of multiple links for clubfeet:

http://www.internet-health-

directory.com/Conditions_and_Diseases_Musculoskeletal_Disorders_Congen

ital_Anomalies_Clubfoot.html

Hints and Tips:

http://ponseticlubfoot.freeservers.com/hints.html

HTH,

Tori 1/30/04 bilateral cf Markell's 16 hrs

12/7/01 noncf

[Guest guest]

Hi Reid,

We are from Michigan also, Livingston County area, about 1 hour

outside of Detroit. Our daughter was diagnosed at our 19 week

ultrasound that she had bilateral clubfoot. At the time our doctor

told us we didn't know how mild or severe it would be and just to wait

until she was born. Our older daughter had intoeing at birth (no

correction needed, she outgrew it) and so we were'nt too worried and

thought it was the same thing and did not educate ourselves until

after she was born with moderately severe bilateral clubfoot. So,

after that, it was a race for information and we started at The

University of Michigan, Mott's Childrens hospital for treatment being

told that surgery was the only form of clubfoot treatment available

today and went with our pediatricians referral. We specifically asked

about a method called the Ponseti method after stumbling across Dr.

Ponseti's website back in 2000 and again were told it was no longer an

available treatment option.

Well, to make a long story short, we found out it was still being

performed (by this time was already 5 months old and the casting

at U of M was not working) but at the time only in Iowa and or by 4

other doctors in the U.S. none in Michigan. So, we went to Iowa when

turned 5 months old.

She is now 5 years old and doing great. The Ponseti method was the

best thing we ever did for her and I would choose it over and over

again in a heartbeat! I have heard that there is one or two doctors

doing the Ponseti method here in Michigan now although I do not know

their names (I'm sure the parents going to them here on the group can

give you that information). Just be sure when choosing a doctor that

you ask lots of questions! Educate yourself on the method and make

sure that the doctor uses the same protocal as Ponseti himself, I have

heard of doctors claiming to use the method but stray too far from the

way the method is supposed to be performed. That to me would be a big

red flag.

Try not to worry, clubfoot is definitely correctable, plays

soccor, swims, does ballet and just about everything else! She's

really fast too and no one who doesn't know her story of when she was

born has any idea that she had clubfoot at all, the Ponseti method

really was a blessing for our family, I guess I can't say enough about

it.

Holly and (born:2-11-00 mod. severe bilateral clubfoot, now 5

yrs. old)

>

>

> hi,

> My wife and I went for are Ultrasound the other day and everything

was

> fine except they diagnosed our soon to be newborn with bilater

> clubfoot. I was just wondering what to expect, etc. We are from

> Kalamazoo Michigan and wondered what lies ahead for us. Any and all

> help is much appreciated. Thanks to all in advance

>

> Reid

[Guest guest]

Thanks for your input. I really hope we can find a doctor in the area that does

the Ponseti method. I guess its just so difficult to know what to do at this

early stage, considering we have another 15 weeks to go but I want answers!

shelbytru dhtru@...> wrote:

Hi Reid,

We are from Michigan also, Livingston County area, about 1 hour

outside of Detroit. Our daughter was diagnosed at our 19 week

ultrasound that she had bilateral clubfoot. At the time our doctor

told us we didn't know how mild or severe it would be and just to wait

until she was born. Our older daughter had intoeing at birth (no

correction needed, she outgrew it) and so we were'nt too worried and

thought it was the same thing and did not educate ourselves until

after she was born with moderately severe bilateral clubfoot. So,

after that, it was a race for information and we started at The

University of Michigan, Mott's Childrens hospital for treatment being

told that surgery was the only form of clubfoot treatment available

today and went with our pediatricians referral. We specifically asked

about a method called the Ponseti method after stumbling across Dr.

Ponseti's website back in 2000 and again were told it was no longer an

available treatment option.

Well, to make a long story short, we found out it was still being

performed (by this time was already 5 months old and the casting

at U of M was not working) but at the time only in Iowa and or by 4

other doctors in the U.S. none in Michigan. So, we went to Iowa when

turned 5 months old.

She is now 5 years old and doing great. The Ponseti method was the

best thing we ever did for her and I would choose it over and over

again in a heartbeat! I have heard that there is one or two doctors

doing the Ponseti method here in Michigan now although I do not know

their names (I'm sure the parents going to them here on the group can

give you that information). Just be sure when choosing a doctor that

you ask lots of questions! Educate yourself on the method and make

sure that the doctor uses the same protocal as Ponseti himself, I have

heard of doctors claiming to use the method but stray too far from the

way the method is supposed to be performed. That to me would be a big

red flag.

Try not to worry, clubfoot is definitely correctable, plays

soccor, swims, does ballet and just about everything else! She's

really fast too and no one who doesn't know her story of when she was

born has any idea that she had clubfoot at all, the Ponseti method

really was a blessing for our family, I guess I can't say enough about

it.

Holly and (born:2-11-00 mod. severe bilateral clubfoot, now 5

yrs. old)

>

>

> hi,

> My wife and I went for are Ultrasound the other day and everything

was

> fine except they diagnosed our soon to be newborn with bilater

> clubfoot. I was just wondering what to expect, etc. We are from

> Kalamazoo Michigan and wondered what lies ahead for us. Any and all

> help is much appreciated. Thanks to all in advance

>

> Reid

[Guest guest]

Hey there Reid! Welcome to our group! Everything seems to slow down on

the weekend, so you'll probably get a ton of responses come Monday!

You've already gotten some good responses and good links. The only

things I can add are:

1. TAKE LOTS OF PICTURES!!! We didn't know about my daughter's club

foot until she was born, and didn't really think to take pictures. But

now I really wish I had some of every stage--uncorrected, 1st cast,

between casts, 2nd cast, etc. I could really kick myself! You may not

think you'll want to remember this, but trust me--someday you'll be

looking at the little ones perfect feet and want to compare!

2. Have fun with it! It's hard, people may stare at your little one in

casts, but just have fun! My daughter had some pretty wild casts--I

went and bought every color permanent marker they had and gave her a

new design every week! And it's really funny to see little tiny casts

with signatures all over them! (My dad wrote " This comes from my

father's side of the family " on her first cast!)

3. DON'T LET THIS OVERSHADOW YOUR PREGNANCY!!! I know the other moms

mentioned this too, but it bears repeating. Knowing in advance is a

blessing, because you can prepare by buying the right kind of outfits

and carriers and blah blah blah, but don't get too worked up about it--

remember, chances are your little angel will be just perfect, aside

from some crookedy feet! (Which are actually kind of cute!)

Other than that, ask away! We're just DYING to give you all our

opinions on anything and everything!

, mommy of:

Guinevere, on & Ava 8/4/04 right club foot, ABS, FAB 18/7

>

>

> hi,

> My wife and I went for are Ultrasound the other day and everything

was

> fine except they diagnosed our soon to be newborn with bilater

> clubfoot. I was just wondering what to expect, etc. We are from

> Kalamazoo Michigan and wondered what lies ahead for us. Any and all

> help is much appreciated. Thanks to all in advance

>

> Reid

[Guest guest]

Amen to all of that.

Re: baby diagnosed with bilateral clubfoot

Hey there Reid! Welcome to our group! Everything seems to slow down on

the weekend, so you'll probably get a ton of responses come Monday!

You've already gotten some good responses and good links. The only

things I can add are:

1. TAKE LOTS OF PICTURES!!! We didn't know about my daughter's club

foot until she was born, and didn't really think to take pictures. But

now I really wish I had some of every stage--uncorrected, 1st cast,

between casts, 2nd cast, etc. I could really kick myself! You may not

think you'll want to remember this, but trust me--someday you'll be

looking at the little ones perfect feet and want to compare!

2. Have fun with it! It's hard, people may stare at your little one in

casts, but just have fun! My daughter had some pretty wild casts--I

went and bought every color permanent marker they had and gave her a

new design every week! And it's really funny to see little tiny casts

with signatures all over them! (My dad wrote " This comes from my

father's side of the family " on her first cast!)

3. DON'T LET THIS OVERSHADOW YOUR PREGNANCY!!! I know the other moms

mentioned this too, but it bears repeating. Knowing in advance is a

blessing, because you can prepare by buying the right kind of outfits

and carriers and blah blah blah, but don't get too worked up about it--

remember, chances are your little angel will be just perfect, aside

from some crookedy feet! (Which are actually kind of cute!)

Other than that, ask away! We're just DYING to give you all our

opinions on anything and everything!

, mommy of:

Guinevere, on & Ava 8/4/04 right club foot, ABS, FAB 18/7

>

>

> hi,

> My wife and I went for are Ultrasound the other day and everything

was

> fine except they diagnosed our soon to be newborn with bilater

> clubfoot. I was just wondering what to expect, etc. We are from

> Kalamazoo Michigan and wondered what lies ahead for us. Any and all

> help is much appreciated. Thanks to all in advance

>

> Reid

[Guest guest]

You are so lucky you found this group before the birth of your child.

There are so many helpful hints here that will make the whole

experience much less stressful. Just knowing you're not alone is a

great comfort. I discovered this site when my son was already almost

four months old after we had already gone through the casting and the

tendon release surgery and we were struggling with the shoes. Out of

everything, the shoes will be the biggest pain. But, you'll find out

soon enough. Definitely read up on the tips people have put

together. They saved me from flinging those darn things across the

room more than once.

I also knew from the ultrasound that our little boy would have

bilateral club feet. The pity party everyone kept throwing me, from

the doctors to friends and relatives, really ticked me off. My

husband was also born with clubfeet, much worse than our child, and I

didn't really see what the big deal was. It's all correctable, just

like bad teeth when you need braces. So don't let other people's good

intentions get in the way of getting your child the best treatment and

care possible.

We had a great orthopedic surgeon here in San Francisco at UCSF. My

only concern was the aftercare. He didn't want to see us again until

little Z was 1 yr old. No check ups to make sure we were using the

shoes properly or anything. So I applied to be seen at Shriner's on

the advise of the postings on this site. The doctor in Sacramento was

very nice. He told us our surgeon had done a great job and that we

were doing a great job as well with the shoes. They gave us a new set

of shoes and a better bar/brace and we'll be back in 3 months. A

little hand holding goes a long way. Just remember, if something

doesn't feel right to you, always go for that second opinion. It

certainly can't hurt.

>

>

> hi,

> My wife and I went for are Ultrasound the other day and everything

was

> fine except they diagnosed our soon to be newborn with bilater

> clubfoot. I was just wondering what to expect, etc. We are from

> Kalamazoo Michigan and wondered what lies ahead for us. Any and all

> help is much appreciated. Thanks to all in advance

>

> Reid

[Guest guest]

Hi Reid,

Welcome to the club!

I have a daughter, almost one, that was diagnosed via ultra sound at 11 weeks

pregnant with Bilateral Clubbed Feet. That gave me LOTS of time for research.

My only regret is not getting a doctor that was recommended by Dr. I.V. Ponseti.

I did see a doctor that knew of the Ponseti Method (which we met during my

pregnancy) but as you will probably read, they add their own signature to the

method because they've not been properly taught by Dr. P. (Now that I do see

Dr. Ponseti, I've seen that he has doctors from all over the country do an

" internship " with him to learn his method of the proper correction) Lhea went

through her first srugery and wore the shoes (white boots) and boy did she cry -

cried ALOT but I realized her feet were NOT corrected. Through this site and my

own instinct because I knew of Dr. P. but hadn't realized that her doctor wasn't

on his list of referrals.

Long story short, I sought Dr. P and now Lhea is in her shoes where she started

re-casting with him - went through another lengthening then her shoes for 23

hours, 7 days a week down to 16 hour days now -

This site has been such a wonderful support group. They are always here for YOU

ALL OF THE TIME.

Another thing I can say is that although I knew that our daughter would be born

with CF, I gathered my families (not all at once), got material off of the net,

made booklets for them and hosted meals where I explained this to all of them

and asked for their respect to our child and to not feel sorry for her because

there was nothing wrong with her. They did respect our wishes. Also, you will

notice that as hard as it will be on you to see your baby this way, they are so

resilient and leg strong and WATCH OUT cause they when they start kicking,

you'll feel it!

GOD BLESS & KEEP IN TOUCH

Jennipher

Mommy to Lhea, 5/04, BCF, shoes 16/7 from 23/7

jones_reid jones_reid@...> wrote:

hi,

My wife and I went for are Ultrasound the other day and everything was

fine except they diagnosed our soon to be newborn with bilater

clubfoot. I was just wondering what to expect, etc. We are from

Kalamazoo Michigan and wondered what lies ahead for us. Any and all

help is much appreciated. Thanks to all in advance

Reid