Re: New to forum - Anyone live in Tampa Bay area?(Long reply to )

May 7, 2006

Hi ,

Welcome to the group , First of all, Congratulations on your

pregnancy! And just so you know, the vast majority of club foot

diagnosies are of singular idiopathic anomolies and No other issues

are found. We still don't what causes club foot nor why it happens.

In our case no cf on either side could be found but who knows, in

decades past at least in my family, things were not always

disclosed?!.

You are right! You will find so much comfort in this site! This group

was like a life line to me when Grace was born as I really and

honestly didn't know what club foot was (her right club foot was

undiagnosed even though I had 6 U/S's done because of her kidney

issues )

It sounds so silly now that I have learned so much and can spout off

terms like abduction and dorsiflexion etc like they are nothing but

quite honestly, you too will become something of an 'expert' on your

child's condition because You are his/her mama!

We kinda fell into Ponseti treatment (TG)...went for initial

treatment at our Children's Hosp. in Vancouver Canada and were

HORRIFIED at how Grace was treated/casted and I said I wanted her

records transfered to Royal Columbian Hospital (the one she was born

at) right then and there!

To re-play a bit...I had planned on her being treated by Dr. Pirani

at RCH but he was away at the time of her birth and even though I had

heard rave reviews about him from the nurses (who I always listen to

the most having many family members in the medical field) I didn't

know that it would be OK to wait the week and a half for him to get

back to have her casted. Come to find out from this group that I

could have waited much much longer than that but at the time, I just

wanted her foot fixed.

Well, TG that that experience at Children's was so bad cuz I asked

that her records be forwarded to Dr. Pirani right then and there. I

remembered dr. " M " being shocked at my request but composing himself

and telling me that he had 'heard great things about Dr. Pirani " . I

didn't know anything about the Ponseti Method at that point but I

KNEW that Dr. Pirani MUST be better than what I experienced there!!!!

I won't go into any great detail but I will say that my daughter was

left screaming on a bed unnecessily (at Childeren's) and that a

casting tech applied the cast without the dr.s supervision with her

continuing her screaming untill she turned blue....I cried the whole

time, it was NOT good = thus my demanding her records be transfered!

So - second casting....waiting in the waiting room at Royal Columbial

Hosp. and I can't help it, I start crying again, like hormal kind

mixed with what the hell is club foot and why did this happen to us

on top of our other medical issues. Well, I cannot tell you in words

what a difference his treatment method's were compared to the first

doc's that we saw but I will try...

First, he actually asked me what was wrong and I think I said 'what

do you mean, my daughter has a club foot! - Loking back, now I can

chide myself and laugh but at the time I thought " Are you Crazy,

What's wrong?? My Kid has a Crooked Foot???!! "

He then pulled out the " props " or series of casts that the foot goes

through to achieve full correction and explained how each cast would

be applied and by then with his soft voice, my daughter (and I) had

stopped crying.

I don't want to " put down " an institution but while he was unwrapping

the initial cast applied by the tech at Children's I couldn't help

but notice that Dr. Pirani was less than happy by the thick thick

thick cotton batton that they had applied under Gracies cast. He then

explained to me what the casts that he had shown me earlier

meant....that with the Ponseit method, as Graces foot was moved

outward, the bones in her foot were manipulated/moved in a certian

sequence untill she had a perfect foot.

At that point he started to cast her but she was still quite upset

(Probably from having the other cast removed......all the cotton

batton, still a fiberglass) and Dr. Pirani asked me if I would like

to take a break and nurse her/give her a bottle to calm her down a

bit? He said that he didn't like to treat an unhappy baby. So he gave

me some time to sooth her and in subsiquent casting's I nursed her

while she was casted....she NEVER made a peep after that!

I also want to point out something that Dr. Pirani has said that I

think just reinforces how humble he is....he said that he was

responsible for 5% of the correction and that I as the parent

(bracing) was responsible for 95% of her treatment. Thanks in large

part from this group, we Never had any problem with her brace and my

sweetie will have a perfect foot!

Welcome again, we are glad that you are here! And BTW, our daughters

foot was corrected with 4 casts. The usual is 5-7 with Ponseti

treatment but you just never know

Again , glad that you are here!!

Smiles,

& Grace 22mos

Urcf FAB 13hrs

>

> Hi. My name is and last week my husband and I were told

> that our unborn child has bilateral club feet. I am 21 weeks

pregnant

> and this is our first child. We are waiting on results from an

amnio

> to make sure there are no accompanying problems.

>

> Reading the posts here have greatly alleviated my fears and my guilt

> and my shame at my reaction to finding out there was a problem with

my

> baby. I have spent, it seems like, an entire week on the internet

> researching and reading about CF. I have ready many,many positive

> things about the Ponseti method and will seek a Dr. trained in this

> method to treat my child.

>

> On the University of Iowa website it lists two doctors in Tampa ,

who

> practice at the Shriners Hospital, and are trained in the Ponseti

> method. I was wondering if anyone here is from Florida and what

Dr's

> they used. Has anyone been treated at any Shriners Hospital or

> specifically the one in Tampa?

>

> I look forward to reading more about all of you and your experiences

> as my pregnancy progresses. And I am positive you will all be a God

> send when my baby is born and starting treatment and I need advice

or

> just to vent.

>

> Thanks in advance.

>

May 7, 2006

Hi ,

Thank you so much for the positive reassurances.

After reading your post, I realized that I think one of the reasons my

husband and I have been, what I consider, unreasonably upset over a

" little foot problem " ; is because of how we were treated and told

about the problem. Throughout my pregnancy, I have dreaded Dr visits

because they seem so mechanical and impersonal. My Obgyn office is

like a cattle shute. Move em in, move em out! I tend to see

different midwifes on my visits and I don't even know their names. I

chose the midwifery program because I thought I would get a more

personal, motherly touch. I am unable to leave this practice for

another because I am self-pay and have already paid quite a bit down.

I can't afford to start over at another practice. My husband and I

have health insurance, but it doesn't cover maternity.

Anyway, without taking an hour to give all the tiny details, we were

told about the CF so harshly, quickly and impersonally that I don't

think we even understood what was going on. The Dr was in such a rush

to finish us and move on, it seemed. We felt so alone and let down by

the very people we are paying to guide us through this pregnancy.

After reading your post, I will make sure that my baby doesn't get

handled the same way. Like you, I will find a better practitioner if

I don't think we are being treated appropriately. I know Dr's are

stressed and busy but I'm not going to see them now because I have a

cold... I'm trusting them with the care of myself and my baby. That's

HUGE! A little empathy and tenderness goes a long way.

Thanks again for your reply.

> >

> > Hi. My name is and last week my husband and I were told

> > that our unborn child has bilateral club feet. I am 21 weeks

> pregnant

> > and this is our first child. We are waiting on results from an

> amnio

> > to make sure there are no accompanying problems.

> >

> > Reading the posts here have greatly alleviated my fears and my guilt

> > and my shame at my reaction to finding out there was a problem with

> my

> > baby. I have spent, it seems like, an entire week on the internet

> > researching and reading about CF. I have ready many,many positive

> > things about the Ponseti method and will seek a Dr. trained in this

> > method to treat my child.

> >

> > On the University of Iowa website it lists two doctors in Tampa ,

> who

> > practice at the Shriners Hospital, and are trained in the Ponseti

> > method. I was wondering if anyone here is from Florida and what

> Dr's

> > they used. Has anyone been treated at any Shriners Hospital or

> > specifically the one in Tampa?

> >

> > I look forward to reading more about all of you and your experiences

> > as my pregnancy progresses. And I am positive you will all be a God

> > send when my baby is born and starting treatment and I need advice

> or

> > just to vent.

> >

> > Thanks in advance.

> >

>

May 8, 2006

Hi, , and welcome,

We're glad you posted and have been reassured by what you've read

here. I'm so sorry that the diagnosis and news you were given was

handled in such a crummy way. It would be hard no matter how many

pregancies you'd had, but especially in your first.

We know how scared and overwhelmed you probably still are.. and

afraid of the unknown. We have been there before, and hope to help!

First of all, it's normal for you to be worried. But let me tell you

that in my years of experience with this now, I have known dozens of

parents who have been scared to death by their doctors at ultrasounds

that there " Might Be Something Else Wrong " and in the great majority

of cases, there never is. Clubfoot is very often an isolated defect,

with the baby completely healthy and normal in every other way.

It might not feel like it now, but you are very lucky to have found

out ahead of time.. rather than be surprised at delivery, so you have

time to be prepared and research your options.

My daughter was born with unilateral left clubfoot, a surprise at

delivery for us.. but which has been completely corrected with the

Ponseti method. She is now almost 6. She takes ballet, plays soccer,

jumps rope, tiptoes, climbs, wears cute sandals, goes barefoot.. No

one can tell anything was ever wrong with her foot. She has excellent

function. Her foot is normal looking and hard to distinguish as

different from the other. She is a regular little girl .. smart,

active, capable and completely fine. She is not AT ALL 'defined' by

her foot.

It's common to worry and wonder if your child will look normal, have

good function, not limp, be able to do the things other children do..

With good treatment, the answer is absolutely yes!

Many, many of us don't know of other cases 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 a lot of 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 someone who knows what they are doing. It's

VERY important, however, 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.

I don't know personally about doctors in Florida, but I'm sure you'll

get some good feedback here. Be aware that you will have to be

vigilant, and not take what the doctor says at face value, if you are

determined to get the best care for your baby. Sometimes it takes a

bit a travel to get to a good doc. (Be sure to read the " checklist "

for parents at the Ponseti Links site.) As said, you will no

doubt become an expert on this condition. The minute your baby is

born, you will be 'the' expert on him or her. Listen to your

instincts!

So.. your sweet little baby will be born, you will love him or her..

you will be able to do what you need to do. Please don't let dread or

worry sap the joy out of your pregnancy and early days with your

baby. You will be strong, and your baby will be OK. I know that's

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

the same to other parents!

You've probably already seen the following websites, but check them

out if you haven't:

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clu

bfeet/index.html

http://members.tripod.com/ponseti_links-ivil/

http://www.global-help.org/publications/cf-english.pdf

I hope this helps. Take care,

and Claire

6/29/00, left cf, corrected, doing great

May 8, 2006

,

Sounds like you could use a little " personal touch " , which I hope you

can find here. We are a pretty " motherly " bunch and we would love to

be there for you as you go through this, to help you in any way we

can. Keep us posted!

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

> > >

> > > Hi. My name is and last week my husband and I were told

> > > that our unborn child has bilateral club feet. I am 21 weeks

> > pregnant

> > > and this is our first child. We are waiting on results from an

> > amnio

> > > to make sure there are no accompanying problems.

> > >

> > > Reading the posts here have greatly alleviated my fears and my guilt

> > > and my shame at my reaction to finding out there was a problem with

> > my

> > > baby. I have spent, it seems like, an entire week on the internet

> > > researching and reading about CF. I have ready many,many positive

> > > things about the Ponseti method and will seek a Dr. trained in this

> > > method to treat my child.

> > >

> > > On the University of Iowa website it lists two doctors in Tampa ,

> > who

> > > practice at the Shriners Hospital, and are trained in the Ponseti

> > > method. I was wondering if anyone here is from Florida and what

> > Dr's

> > > they used. Has anyone been treated at any Shriners Hospital or

> > > specifically the one in Tampa?

> > >

> > > I look forward to reading more about all of you and your experiences

> > > as my pregnancy progresses. And I am positive you will all be a God

> > > send when my baby is born and starting treatment and I need advice

> > or

> > > just to vent.

> > >

> > > Thanks in advance.

> > >

> >

>

May 8, 2006

Hi ,

Sorry to hear that you were told of your baby's club foot so harshly!

It's too bad that these doc's are so darned busy! Ours was the same,

in fact the nurses where Grace was born made a few cracks about him.

Basically saying that he was one of those busy OB's that didn't show

up until you were at least 8 cm's, collected his $1500 for the

delivery and was outta there haha, (I can laugh about it now) and

honestly, the nurses were so great that I really didn't care at the

time....I had more important things on my mind....mainly, GET THIS

BABY OUT lol! I was happy to have my OB though because he did an

awesome job stitching me up (I tore from Grace's shoulders, she has

these massive shoulders from her dad).

For me, I was pissed because we had 7 US's - one was even one of

those new ones in colour and 3D and they never picked up on her right

club foot. But anyway, this group is far better than any doc (that

isn't Ponseti) or Ped for advise for club foot I have found

personally anyway

I am glad to hear that you are feelin better about the whole thing!

Once you find a good Ponseti doctor and get things set up, you will

feel so so so much better!!! He/She will explain the whole process to

you etc.

Smiles,

& Grace

> > >

> > > Hi. My name is and last week my husband and I were

told

> > > that our unborn child has bilateral club feet. I am 21 weeks

> > pregnant

> > > and this is our first child. We are waiting on results from an

> > amnio

> > > to make sure there are no accompanying problems.

> > >

> > > Reading the posts here have greatly alleviated my fears and my

guilt

> > > and my shame at my reaction to finding out there was a problem

with

> > my

> > > baby. I have spent, it seems like, an entire week on the

internet

> > > researching and reading about CF. I have ready many,many

positive

> > > things about the Ponseti method and will seek a Dr. trained in

this

> > > method to treat my child.

> > >

> > > On the University of Iowa website it lists two doctors in

Tampa ,

> > who

> > > practice at the Shriners Hospital, and are trained in the

Ponseti

> > > method. I was wondering if anyone here is from Florida and

what

> > Dr's

> > > they used. Has anyone been treated at any Shriners Hospital or

> > > specifically the one in Tampa?

> > >

> > > I look forward to reading more about all of you and your

experiences

> > > as my pregnancy progresses. And I am positive you will all be

a God

> > > send when my baby is born and starting treatment and I need

advice

> > or

> > > just to vent.

> > >

> > > Thanks in advance.

> > >

> >

>

May 8, 2006

,

When was born, we didn't know he'd have cf. My midwife got all angry at

me and said to be glad it wasn't his head I ruint, only his feet. I was in

shock for three solid days so bad I couldn't even look at his feet, honestly. I

would avert my eyes and not look I was so ashamed of myself for ruining my baby.

THings get better though, and you'll be OK.

s.

Re: New to forum - Anyone live in Tampa Bay

area?(Long reply to )