Information packs for new parents?

[Guest guest]

I think this is a great idea! I also think that could make some

additional clubfoot models that are used for teaching residents in hospitals and

have

them available to hospitals to show parents how clubfoot could be corrected my

manipulating the model. He showed me one when I saw Dr. Ponseti and I told

him that it would have been wonderful if they would have had that when my son

was born, it would have made me understand the situation better and made me feel

better about my son's feet. I too did not have any knowledge whatsoever.

Maybe Pediatric orthos should have these models in their office as well

[Guest guest]

I think this is a great idea! I also think that could make some

additional clubfoot models that are used for teaching residents in hospitals and

have

them available to hospitals to show parents how clubfoot could be corrected my

manipulating the model. He showed me one when I saw Dr. Ponseti and I told

him that it would have been wonderful if they would have had that when my son

was born, it would have made me understand the situation better and made me feel

better about my son's feet. I too did not have any knowledge whatsoever.

Maybe Pediatric orthos should have these models in their office as well

[Guest guest]

Reading 's intro reminded me how hard it was when was born

and I couldn't get any information about clubfeet while in the

hospital. Has anyone ever put together an information pack that could

be taken to local hospitals to be passed out to parents at the birth

of their child? I can imagine that I would put in it Dr. Ponseti's

book, web sites and groups, local resources, as well as doctors the

families might want to consider. I know that I would have really

appreciated having this information provided for me when my daughter

was born. Just wanted some feedback on this. Thanks!

Donna

[Guest guest]

Reading 's intro reminded me how hard it was when was born

and I couldn't get any information about clubfeet while in the

hospital. Has anyone ever put together an information pack that could

be taken to local hospitals to be passed out to parents at the birth

of their child? I can imagine that I would put in it Dr. Ponseti's

book, web sites and groups, local resources, as well as doctors the

families might want to consider. I know that I would have really

appreciated having this information provided for me when my daughter

was born. Just wanted some feedback on this. Thanks!

Donna

[Guest guest]

I think it is a good idea.

donnabrooke1 wrote:

Reading 's intro reminded me how hard it was when was born

and I couldn't get any information about clubfeet while in the

hospital. Has anyone ever put together an information pack that could

be taken to local hospitals to be passed out to parents at the birth

of their child? I can imagine that I would put in it Dr. Ponseti's

book, web sites and groups, local resources, as well as doctors the

families might want to consider. I know that I would have really

appreciated having this information provided for me when my daughter

was born. Just wanted some feedback on this. Thanks!

Donna

[Guest guest]

I think it is a good idea.

donnabrooke1 wrote:

Reading 's intro reminded me how hard it was when was born

and I couldn't get any information about clubfeet while in the

hospital. Has anyone ever put together an information pack that could

be taken to local hospitals to be passed out to parents at the birth

of their child? I can imagine that I would put in it Dr. Ponseti's

book, web sites and groups, local resources, as well as doctors the

families might want to consider. I know that I would have really

appreciated having this information provided for me when my daughter

was born. Just wanted some feedback on this. Thanks!

Donna

[Guest guest]

Donna,

We've been kicking this around for years. Even just having a pamphlet

available.......

the biggest roadblock that we determined was that at most hospitals,

there wasn't a individual or group that could get the papers

distributed reliably. Some nurses (moms on the board) chimed in that

there's already too much paperwork floating around at the hospital and

it would probably end up getting thrown away or shoved in a corner

where it would not be easily located when a clubfoot baby was actually

born. At the time, most of us noted that when we had our clubfoot

kids, we didn't even get a March of Dimes handout or any kind of

printed information from a large scale organization.

We talked about using pediatricians' offices and health department

clinics where moms bring their kids for well-baby check ups to

distribute information as well.

There is a poster that advertises this group in the files section if

you have some local contacts who might be willing to either post it or

hand it out to families with clubfoot babies.

One of the original goals of the non-profit organization Precious

Little Feet that Charity organized was to print and distribute

clubfoot treatment information packets on a large scale basis. The

organization has it's NPO status completed, but to date, nothing has

been undertaken. This might be one of 's goals for her NP group

also- Pediatric Orthopaedic Foundation.

Just wanted to let you know that we've thought about it, and some

folks actually started to compile pamphlets- but the distribution and

printing costs always seem to be a roadblock. On a local level

though, if you can get an " in " with some of the hospital/clinic

workers, you can give them the information and permission to give out

your name and contact information...you'll just have to keep in touch

with them periodically to keep it fresh in their minds I think. I've

tried to get local families to call me by getting the OB/GYN and

pediatrician to give them my name and my daughter's story briefly-

most families though, are reluctant to call a stranger.....even a well-

intentioned one.

& (3-16-00, left clubfoot)

[Guest guest]

Donna,

We've been kicking this around for years. Even just having a pamphlet

available.......

the biggest roadblock that we determined was that at most hospitals,

there wasn't a individual or group that could get the papers

distributed reliably. Some nurses (moms on the board) chimed in that

there's already too much paperwork floating around at the hospital and

it would probably end up getting thrown away or shoved in a corner

where it would not be easily located when a clubfoot baby was actually

born. At the time, most of us noted that when we had our clubfoot

kids, we didn't even get a March of Dimes handout or any kind of

printed information from a large scale organization.

We talked about using pediatricians' offices and health department

clinics where moms bring their kids for well-baby check ups to

distribute information as well.

There is a poster that advertises this group in the files section if

you have some local contacts who might be willing to either post it or

hand it out to families with clubfoot babies.

One of the original goals of the non-profit organization Precious

Little Feet that Charity organized was to print and distribute

clubfoot treatment information packets on a large scale basis. The

organization has it's NPO status completed, but to date, nothing has

been undertaken. This might be one of 's goals for her NP group

also- Pediatric Orthopaedic Foundation.

Just wanted to let you know that we've thought about it, and some

folks actually started to compile pamphlets- but the distribution and

printing costs always seem to be a roadblock. On a local level

though, if you can get an " in " with some of the hospital/clinic

workers, you can give them the information and permission to give out

your name and contact information...you'll just have to keep in touch

with them periodically to keep it fresh in their minds I think. I've

tried to get local families to call me by getting the OB/GYN and

pediatrician to give them my name and my daughter's story briefly-

most families though, are reluctant to call a stranger.....even a well-

intentioned one.

& (3-16-00, left clubfoot)

[Guest guest]

You know, here in our county at least, when a baby is born with any possible

birth defect/syndrome/etc. they are visited in the hospital by an early

intervention coordinator. If this is more universal perhaps they would be the

person to contact. Or even the Social Worker in the NICU or someone like that.

Chris

Re: Information packs for new parents?

Donna,

We've been kicking this around for years. Even just having a pamphlet

available.......

the biggest roadblock that we determined was that at most hospitals,

there wasn't a individual or group that could get the papers

distributed reliably. Some nurses (moms on the board) chimed in that

there's already too much paperwork floating around at the hospital and

it would probably end up getting thrown away or shoved in a corner

where it would not be easily located when a clubfoot baby was actually

born. At the time, most of us noted that when we had our clubfoot

kids, we didn't even get a March of Dimes handout or any kind of

printed information from a large scale organization.

We talked about using pediatricians' offices and health department

clinics where moms bring their kids for well-baby check ups to

distribute information as well.

There is a poster that advertises this group in the files section if

you have some local contacts who might be willing to either post it or

hand it out to families with clubfoot babies.

One of the original goals of the non-profit organization Precious

Little Feet that Charity organized was to print and distribute

clubfoot treatment information packets on a large scale basis. The

organization has it's NPO status completed, but to date, nothing has

been undertaken. This might be one of 's goals for her NP group

also- Pediatric Orthopaedic Foundation.

Just wanted to let you know that we've thought about it, and some

folks actually started to compile pamphlets- but the distribution and

printing costs always seem to be a roadblock. On a local level

though, if you can get an " in " with some of the hospital/clinic

workers, you can give them the information and permission to give out

your name and contact information...you'll just have to keep in touch

with them periodically to keep it fresh in their minds I think. I've

tried to get local families to call me by getting the OB/GYN and

pediatrician to give them my name and my daughter's story briefly-

most families though, are reluctant to call a stranger.....even a well-

intentioned one.

& (3-16-00, left clubfoot)

[Guest guest]

You know, here in our county at least, when a baby is born with any possible

birth defect/syndrome/etc. they are visited in the hospital by an early

intervention coordinator. If this is more universal perhaps they would be the

person to contact. Or even the Social Worker in the NICU or someone like that.

Chris

Re: Information packs for new parents?

Donna,

We've been kicking this around for years. Even just having a pamphlet

available.......

the biggest roadblock that we determined was that at most hospitals,

there wasn't a individual or group that could get the papers

distributed reliably. Some nurses (moms on the board) chimed in that

there's already too much paperwork floating around at the hospital and

it would probably end up getting thrown away or shoved in a corner

where it would not be easily located when a clubfoot baby was actually

born. At the time, most of us noted that when we had our clubfoot

kids, we didn't even get a March of Dimes handout or any kind of

printed information from a large scale organization.

We talked about using pediatricians' offices and health department

clinics where moms bring their kids for well-baby check ups to

distribute information as well.

There is a poster that advertises this group in the files section if

you have some local contacts who might be willing to either post it or

hand it out to families with clubfoot babies.

One of the original goals of the non-profit organization Precious

Little Feet that Charity organized was to print and distribute

clubfoot treatment information packets on a large scale basis. The

organization has it's NPO status completed, but to date, nothing has

been undertaken. This might be one of 's goals for her NP group

also- Pediatric Orthopaedic Foundation.

Just wanted to let you know that we've thought about it, and some

folks actually started to compile pamphlets- but the distribution and

printing costs always seem to be a roadblock. On a local level

though, if you can get an " in " with some of the hospital/clinic

workers, you can give them the information and permission to give out

your name and contact information...you'll just have to keep in touch

with them periodically to keep it fresh in their minds I think. I've

tried to get local families to call me by getting the OB/GYN and

pediatrician to give them my name and my daughter's story briefly-

most families though, are reluctant to call a stranger.....even a well-

intentioned one.

& (3-16-00, left clubfoot)

[Guest guest]

Donna...that's a wonderful idea. The only problem is that most of

these hospitals and doctors always push toward surgery. So they would

be hesitant to distribute any info that does not follow their way of

thinking, or that deviates from their " norm " . I do think it's worth a

try. Even if these packets reach a limited number of people, at least

we'll know someone has been helped.

>

> Reading 's intro reminded me how hard it was when was

born

> and I couldn't get any information about clubfeet while in the

> hospital. Has anyone ever put together an information pack that

could

> be taken to local hospitals to be passed out to parents at the birth

> of their child? I can imagine that I would put in it Dr. Ponseti's

> book, web sites and groups, local resources, as well as doctors the

> families might want to consider. I know that I would have really

> appreciated having this information provided for me when my daughter

> was born. Just wanted some feedback on this. Thanks!

>

> Donna

>

[Guest guest]

Donna...that's a wonderful idea. The only problem is that most of

these hospitals and doctors always push toward surgery. So they would

be hesitant to distribute any info that does not follow their way of

thinking, or that deviates from their " norm " . I do think it's worth a

try. Even if these packets reach a limited number of people, at least

we'll know someone has been helped.

>

> Reading 's intro reminded me how hard it was when was

born

> and I couldn't get any information about clubfeet while in the

> hospital. Has anyone ever put together an information pack that

could

> be taken to local hospitals to be passed out to parents at the birth

> of their child? I can imagine that I would put in it Dr. Ponseti's

> book, web sites and groups, local resources, as well as doctors the

> families might want to consider. I know that I would have really

> appreciated having this information provided for me when my daughter

> was born. Just wanted some feedback on this. Thanks!

>

> Donna

>

[Guest guest]

Donna-

What I have personally done-which may work for you, is I have given my

name and contact information to our local ortho docs office as well as

our peds office in case they get any new cases of clubfeet as a

resource. So far-no takers-doesn't mean that there has not been any

new clubfeet babies, I just felt that it may help to know/have a

friendly face to talk to. I also talk with our First steps intake

coordinator as well and told her I would be more than willing to talk

to any cf families if there are any out there.

Just an idea!

kathleen

>

> Reading 's intro reminded me how hard it was when was

born

> and I couldn't get any information about clubfeet while in the

> hospital. Has anyone ever put together an information pack that

could

> be taken to local hospitals to be passed out to parents at the birth

> of their child? I can imagine that I would put in it Dr. Ponseti's

> book, web sites and groups, local resources, as well as doctors the

> families might want to consider. I know that I would have really

> appreciated having this information provided for me when my daughter

> was born. Just wanted some feedback on this. Thanks!

>

> Donna

>

[Guest guest]

Donna-

What I have personally done-which may work for you, is I have given my

name and contact information to our local ortho docs office as well as

our peds office in case they get any new cases of clubfeet as a

resource. So far-no takers-doesn't mean that there has not been any

new clubfeet babies, I just felt that it may help to know/have a

friendly face to talk to. I also talk with our First steps intake

coordinator as well and told her I would be more than willing to talk

to any cf families if there are any out there.

Just an idea!

kathleen

>

> Reading 's intro reminded me how hard it was when was

born

> and I couldn't get any information about clubfeet while in the

> hospital. Has anyone ever put together an information pack that

could

> be taken to local hospitals to be passed out to parents at the birth

> of their child? I can imagine that I would put in it Dr. Ponseti's

> book, web sites and groups, local resources, as well as doctors the

> families might want to consider. I know that I would have really

> appreciated having this information provided for me when my daughter

> was born. Just wanted some feedback on this. Thanks!

>

> Donna

>

[Guest guest]

does sell these models and anyone can purchase them. He sold a

few I know at the symposium. I think they come in a set with the

foot in different stages of correction.

As for the information packet, yes, this is a great idea, of course.

I have often thought about this and have planned to do something like

this, just have never had the time.

>

> I think this is a great idea! I also think that could make

some

> additional clubfoot models that are used for teaching residents in

hospitals and have

> them available to hospitals to show parents how clubfoot could be

corrected my

> manipulating the model. He showed me one when I saw Dr. Ponseti and

I told

> him that it would have been wonderful if they would have had that

when my son

> was born, it would have made me understand the situation better and

made me feel

> better about my son's feet. I too did not have any knowledge

whatsoever.

> Maybe Pediatric orthos should have these models in their office as

well

>

>

>

>

>

[Guest guest]

does sell these models and anyone can purchase them. He sold a

few I know at the symposium. I think they come in a set with the

foot in different stages of correction.

As for the information packet, yes, this is a great idea, of course.

I have often thought about this and have planned to do something like

this, just have never had the time.

>

> I think this is a great idea! I also think that could make

some

> additional clubfoot models that are used for teaching residents in

hospitals and have

> them available to hospitals to show parents how clubfoot could be

corrected my

> manipulating the model. He showed me one when I saw Dr. Ponseti and

I told

> him that it would have been wonderful if they would have had that

when my son

> was born, it would have made me understand the situation better and

made me feel

> better about my son's feet. I too did not have any knowledge

whatsoever.

> Maybe Pediatric orthos should have these models in their office as

well

>

>

>

>

>

[Guest guest]

Oh, I just realized you were talking about the clubfoot model with

the bones and tendons, not the little rubber feet. But yes, he does

sell those as well.

>

> I think this is a great idea! I also think that could make

some

> additional clubfoot models that are used for teaching residents in

hospitals and have

> them available to hospitals to show parents how clubfoot could be

corrected my

> manipulating the model. He showed me one when I saw Dr. Ponseti and

I told

> him that it would have been wonderful if they would have had that

when my son

> was born, it would have made me understand the situation better and

made me feel

> better about my son's feet. I too did not have any knowledge

whatsoever.

> Maybe Pediatric orthos should have these models in their office as

well

>

>

>

>

>

[Guest guest]

Oh, I just realized you were talking about the clubfoot model with

the bones and tendons, not the little rubber feet. But yes, he does

sell those as well.

>

> I think this is a great idea! I also think that could make

some

> additional clubfoot models that are used for teaching residents in

hospitals and have

> them available to hospitals to show parents how clubfoot could be

corrected my

> manipulating the model. He showed me one when I saw Dr. Ponseti and

I told

> him that it would have been wonderful if they would have had that

when my son

> was born, it would have made me understand the situation better and

made me feel

> better about my son's feet. I too did not have any knowledge

whatsoever.

> Maybe Pediatric orthos should have these models in their office as

well

>

>

>

>

>

[Guest guest]

You can give it to the hospital but are they actually going to give it to the

parent? I doubt it, really, in most cases anyway. Maybe giving it out to

pediatrician offices would be better?

s.

Information packs for new parents?

Reading 's intro reminded me how hard it was when was born

and I couldn't get any information about clubfeet while in the

hospital. Has anyone ever put together an information pack that could

be taken to local hospitals to be passed out to parents at the birth

of their child? I can imagine that I would put in it Dr. Ponseti's

book, web sites and groups, local resources, as well as doctors the

families might want to consider. I know that I would have really

appreciated having this information provided for me when my daughter

was born. Just wanted some feedback on this. Thanks!

Donna

[Guest guest]

You can give it to the hospital but are they actually going to give it to the

parent? I doubt it, really, in most cases anyway. Maybe giving it out to

pediatrician offices would be better?

s.

Information packs for new parents?

Reading 's intro reminded me how hard it was when was born

and I couldn't get any information about clubfeet while in the

hospital. Has anyone ever put together an information pack that could

be taken to local hospitals to be passed out to parents at the birth

of their child? I can imagine that I would put in it Dr. Ponseti's

book, web sites and groups, local resources, as well as doctors the

families might want to consider. I know that I would have really

appreciated having this information provided for me when my daughter

was born. Just wanted some feedback on this. Thanks!

Donna

[Guest guest]

You know, even cheap flyers hung at churches and laundry mats could make a

difference.

s.

Re: Information packs for new parents?

Donna,

We've been kicking this around for years. Even just having a pamphlet

available.......

the biggest roadblock that we determined was that at most hospitals,

there wasn't a individual or group that could get the papers

distributed reliably. Some nurses (moms on the board) chimed in that

there's already too much paperwork floating around at the hospital and

it would probably end up getting thrown away or shoved in a corner

where it would not be easily located when a clubfoot baby was actually

born. At the time, most of us noted that when we had our clubfoot

kids, we didn't even get a March of Dimes handout or any kind of

printed information from a large scale organization.

We talked about using pediatricians' offices and health department

clinics where moms bring their kids for well-baby check ups to

distribute information as well.

There is a poster that advertises this group in the files section if

you have some local contacts who might be willing to either post it or

hand it out to families with clubfoot babies.

One of the original goals of the non-profit organization Precious

Little Feet that Charity organized was to print and distribute

clubfoot treatment information packets on a large scale basis. The

organization has it's NPO status completed, but to date, nothing has

been undertaken. This might be one of 's goals for her NP group

also- Pediatric Orthopaedic Foundation.

Just wanted to let you know that we've thought about it, and some

folks actually started to compile pamphlets- but the distribution and

printing costs always seem to be a roadblock. On a local level

though, if you can get an " in " with some of the hospital/clinic

workers, you can give them the information and permission to give out

your name and contact information...you'll just have to keep in touch

with them periodically to keep it fresh in their minds I think. I've

tried to get local families to call me by getting the OB/GYN and

pediatrician to give them my name and my daughter's story briefly-

most families though, are reluctant to call a stranger.....even a well-

intentioned one.

& (3-16-00, left clubfoot)

[Guest guest]

You know, even cheap flyers hung at churches and laundry mats could make a

difference.

s.

Re: Information packs for new parents?

Donna,

We've been kicking this around for years. Even just having a pamphlet

available.......

the biggest roadblock that we determined was that at most hospitals,

there wasn't a individual or group that could get the papers

distributed reliably. Some nurses (moms on the board) chimed in that

there's already too much paperwork floating around at the hospital and

it would probably end up getting thrown away or shoved in a corner

where it would not be easily located when a clubfoot baby was actually

born. At the time, most of us noted that when we had our clubfoot

kids, we didn't even get a March of Dimes handout or any kind of

printed information from a large scale organization.

We talked about using pediatricians' offices and health department

clinics where moms bring their kids for well-baby check ups to

distribute information as well.

There is a poster that advertises this group in the files section if

you have some local contacts who might be willing to either post it or

hand it out to families with clubfoot babies.

One of the original goals of the non-profit organization Precious

Little Feet that Charity organized was to print and distribute

clubfoot treatment information packets on a large scale basis. The

organization has it's NPO status completed, but to date, nothing has

been undertaken. This might be one of 's goals for her NP group

also- Pediatric Orthopaedic Foundation.

Just wanted to let you know that we've thought about it, and some

folks actually started to compile pamphlets- but the distribution and

printing costs always seem to be a roadblock. On a local level

though, if you can get an " in " with some of the hospital/clinic

workers, you can give them the information and permission to give out

your name and contact information...you'll just have to keep in touch

with them periodically to keep it fresh in their minds I think. I've

tried to get local families to call me by getting the OB/GYN and

pediatrician to give them my name and my daughter's story briefly-

most families though, are reluctant to call a stranger.....even a well-

intentioned one.

& (3-16-00, left clubfoot)