Pregnancy in RSS Women - Eileen

[Guest guest]

Eileen,

There are a few RSS women out there who have kids. I don't think any

of them are on this list, but I've had contact with a few. I'm 4'1 "

(21 years old) and I've been given mixed answers by medical

professionals in regards to whether or not I'd be able to carry a

child. Although, I haven't purused the issue aggressively since I'm

nowhere near that point in my life yet. I've known women with other

types of dwarfism that have given birth to beautiful healthy babies

and managed to survive the experience, but all of their pregnancies

were monitored closely by a high risk ob/gyn who has quite a bit of

experience treating short statured women. Botton line is that RSS is

so rare that there isn't enough anecdotal evidence, much less

research, to form a definitive answer on whether or not RSS women in

general can conceive and give birth. However, I know it is possible

and has been done by some.

Hope this helps,

Hillary

RSS

[Guest guest]

Hi Hilary.......thanks very much for that. Yes it helps a lot. Do you mind if I

ask you a couple of questions?Did you have any gh treatment. And also...personal

one this....were you when you started menstruating. Oh....and were you born full

term and what did you weigh..??oops...more tah a couple...sorry!

Eileen (mum of Imogen 3ft 16lbs RSS Lucy 13 tommorow and 9 year old twins Owen

and Natasha)

lapapillondegrace hillary.jorgensen@...> wrote:

Eileen,

There are a few RSS women out there who have kids. I don't think any

of them are on this list, but I've had contact with a few. I'm 4'1 "

(21 years old) and I've been given mixed answers by medical

professionals in regards to whether or not I'd be able to carry a

child. Although, I haven't purused the issue aggressively since I'm

nowhere near that point in my life yet. I've known women with other

types of dwarfism that have given birth to beautiful healthy babies

and managed to survive the experience, but all of their pregnancies

were monitored closely by a high risk ob/gyn who has quite a bit of

experience treating short statured women. Botton line is that RSS is

so rare that there isn't enough anecdotal evidence, much less

research, to form a definitive answer on whether or not RSS women in

general can conceive and give birth. However, I know it is possible

and has been done by some.

Hope this helps,

Hillary

RSS

[Guest guest]

Eileen,

I didn't have any growth hormone. The first time gh was offered they

were still mining the hormone from cadavers, and my parents didn't

want that in my body. When I was a little older the synthetic form of

the hormone was approved by the FDA my doctors gave us the option to

try it. I was around the age of ten, I think, and my parents and I

sat down and discussed it and the ultimate decision we made was no.

We made this decision for several reasons, but chief among them were

that the long term effects of the treatment had not been studied and

also that I didn't have a real desire to be taller. I look back now

and have absolutely NO regrets about that decision. I love who I am

and an integral part of who I am is my height. My height, or lack

thereof, has not kept me from doing anything that I've wanted to do.

In fact, if you were to ask me to name some of the worst things that

have ever happened to me, RSS and the fact that I'm short statured

wouldn't even make the list. I look around me on a daily basis and

realize that there are worse things in life than being short. That

said, I would never tell someone they should or shouldn't start ght

based solely on my experience because everyone is different. I think

it's also important to mention that my parents (non-RSS) are fairly

short - my mom is around 5'2 " and my dad around 5'4 " . My non-RSS

brother is 5'6 " on a really good day. It is HIGHLY likely that I

would have ended up below four feet even if I had not had RSS.

I got my first period a few weeks before my fourteenth birthday. I

was tracked by an endo. for signs of early puberty, but I never showed

any and drugs to delay its onset were not necessary.

I was born quite premature and weighed 2lbs. 11ounces. I was not

diagnosed as RSS until fourteen months, and I probably would have been

diagnosed earlier if I had not been premature. The doctors kept

assuring my parents that my failure to thrive was due to my

prematurity and not anything else.

On another note, I read in an earlier post that you're a special ed.

teacher - both of my parents happen to teach spec. ed. as well. Feel

free to ask anything else....

~Hillary

[Guest guest]

Hi Hillary...thankyou for that. Gosh....it's so difficult isn't it! The possible

long term side effects are something that worries me too.I would like Imogen to

be like you and accepting of whatever her stature turns out to be.She seems fine

about everything at the moment...but then she is only 6! And like you she has

'short genes' anyway. I am only 5' 1 and my husband is 5' 6 " .But how do I know

for definate that Imogen will be happy with her height? Supposing we do nothing

and she says to us'why didn't you get gh treatment for me??'

I think another chat with our endo is on the cards for the New Year...and all

these worries will be addressed. Problem with Endo's is they want RSS kids to

have the treatment for their studies........most people give up the treatment

after a while like we did....and this is not what they want so they do try and

'sell' it!

By the way......I'm not a teacher.......I'M A DINNERLADY!!!! I help out at the

spec needs school over the lunchtime period...feeding them and toileting them

etc. But being there does put RSS into perspective. I know there are a lot of

problems especially in the early years with feeding etc...I've been through it

with Imogen.....but it pales into insignificance against some of the cases at my

school. Kids that can do nothing...and never will be able to do anything.I see

you have an academic email address. Are you a student? Did you have any learning

difficulties? Imogen has mild learning difficulties...nothing major.

I'm so glad you started your period late!! I was talking to a woman who is 25

(hi kim...going to embaress you now!) and she said she started puberty at

7!!!!!! Imogen is 7 next birthday and the size of a 2 year old....you frightened

the life out of me Kim!!!

So thanks Hilary...I'm so glad you are happy and at ease with yourself...that's

the way to be for everyone isn't it!

Eileen x

lapapillondegrace hillary.jorgensen@...> wrote:

Eileen,

I didn't have any growth hormone. The first time gh was offered they

were still mining the hormone from cadavers, and my parents didn't

want that in my body. When I was a little older the synthetic form of

the hormone was approved by the FDA my doctors gave us the option to

try it. I was around the age of ten, I think, and my parents and I

sat down and discussed it and the ultimate decision we made was no.

We made this decision for several reasons, but chief among them were

that the long term effects of the treatment had not been studied and

also that I didn't have a real desire to be taller. I look back now

and have absolutely NO regrets about that decision. I love who I am

and an integral part of who I am is my height. My height, or lack

thereof, has not kept me from doing anything that I've wanted to do.

In fact, if you were to ask me to name some of the worst things that

have ever happened to me, RSS and the fact that I'm short statured

wouldn't even make the list. I look around me on a daily basis and

realize that there are worse things in life than being short. That

said, I would never tell someone they should or shouldn't start ght

based solely on my experience because everyone is different. I think

it's also important to mention that my parents (non-RSS) are fairly

short - my mom is around 5'2 " and my dad around 5'4 " . My non-RSS

brother is 5'6 " on a really good day. It is HIGHLY likely that I

would have ended up below four feet even if I had not had RSS.

I got my first period a few weeks before my fourteenth birthday. I

was tracked by an endo. for signs of early puberty, but I never showed

any and drugs to delay its onset were not necessary.

I was born quite premature and weighed 2lbs. 11ounces. I was not

diagnosed as RSS until fourteen months, and I probably would have been

diagnosed earlier if I had not been premature. The doctors kept

assuring my parents that my failure to thrive was due to my

prematurity and not anything else.

On another note, I read in an earlier post that you're a special ed.

teacher - both of my parents happen to teach spec. ed. as well. Feel

free to ask anything else....

~Hillary

[Guest guest]

Hi,

I'm another RSS adult that hangs around this listserv occasionally and I

just wanted to reiterate what Hillary said. I have also emailed with a

couple of RSS women who have had normal pregnancies and didn't even have

C-sections... I think they were both in the higher end of the RSS height

spectrum -- between 4'8 " and 5'?? We don't hear much from them anymore,

since I'm sure they're busy being moms!!

To add my personal experience, I've seen a couple of OB/GYNs to see what

they thought my risks during a pregnancy would be... Now, they didn't know

anything about RSS, but based on my size (4'8 " , ~80lbs) they thought I

should be able to carry to term without bedrest or any more risk than any

other woman. The high-risk OB said I should be prepared for a possible

C-section, but she'd let me try a " normal " birth if I wanted (HA!)

As Hillary said, I think there's way too little research out there right now

to be able to tell you what your little girl will and won't be able to do.

I wish I had something more to offer you, but I have no intention of

following up on this any time soon; I just like to know what lies ahead...

FYI: I'm 26 and a grad student in Iowa (~45 minutes from !!). I never

had GHT or any other interventions. My dad is 5'9 " , mom and sister are

around 5'6 " . And my husband is 6'1.5 " -- we never have figured out what it

is with RSS women and tall guys!!

-Ana

--------------------------------------------------------------------------------\

-------------------------------

>Message: 3

> Date: Mon, 22 Dec 2003 19:04:31 -0000

>

>Subject: Pregnancy in RSS Women - Eileen

>

>Eileen,

>There are a few RSS women out there who have kids. I don't think any

>of them are on this list, but I've had contact with a few. I'm 4'1 "

>(21 years old) and I've been given mixed answers by medical

>professionals in regards to whether or not I'd be able to carry a

>child. Although, I haven't purused the issue aggressively since I'm

>nowhere near that point in my life yet. I've known women with other

>types of dwarfism that have given birth to beautiful healthy babies

>and managed to survive the experience, but all of their pregnancies

>were monitored closely by a high risk ob/gyn who has quite a bit of

>experience treating short statured women. Botton line is that RSS is

>so rare that there isn't enough anecdotal evidence, much less

>research, to form a definitive answer on whether or not RSS women in

>general can conceive and give birth. However, I know it is possible

>and has been done by some.

>

>Hope this helps,

>Hillary

>RSS

>

_________________________________________________________________

Enjoy the holiday season with great tips from MSN.

http://special.msn.com/network/happyholidays.armx

[Guest guest]

Ana...thankyou for that....you made me chuckle and feel hopeful for Immi's

future. My husband always says that some tall guy will sweep her off her feet

one day!

Your comments have helped alot ..thanks.

So do you and meet up??

Eileen x

Ana Hutton Kehrberg hu99am43@...> wrote:

Hi,

I'm another RSS adult that hangs around this listserv occasionally and I

just wanted to reiterate what Hillary said. I have also emailed with a

couple of RSS women who have had normal pregnancies and didn't even have

C-sections... I think they were both in the higher end of the RSS height

spectrum -- between 4'8 " and 5'?? We don't hear much from them anymore,

since I'm sure they're busy being moms!!

To add my personal experience, I've seen a couple of OB/GYNs to see what

they thought my risks during a pregnancy would be... Now, they didn't know

anything about RSS, but based on my size (4'8 " , ~80lbs) they thought I

should be able to carry to term without bedrest or any more risk than any

other woman. The high-risk OB said I should be prepared for a possible

C-section, but she'd let me try a " normal " birth if I wanted (HA!)

As Hillary said, I think there's way too little research out there right now

to be able to tell you what your little girl will and won't be able to do.

I wish I had something more to offer you, but I have no intention of

following up on this any time soon; I just like to know what lies ahead...

FYI: I'm 26 and a grad student in Iowa (~45 minutes from !!). I never

had GHT or any other interventions. My dad is 5'9 " , mom and sister are

around 5'6 " . And my husband is 6'1.5 " -- we never have figured out what it

is with RSS women and tall guys!!

-Ana

--------------------------------------------------------------------------------\

-------------------------------

>Message: 3

> Date: Mon, 22 Dec 2003 19:04:31 -0000

>

>Subject: Pregnancy in RSS Women - Eileen

>

>Eileen,

>There are a few RSS women out there who have kids. I don't think any

>of them are on this list, but I've had contact with a few. I'm 4'1 "

>(21 years old) and I've been given mixed answers by medical

>professionals in regards to whether or not I'd be able to carry a

>child. Although, I haven't purused the issue aggressively since I'm

>nowhere near that point in my life yet. I've known women with other

>types of dwarfism that have given birth to beautiful healthy babies

>and managed to survive the experience, but all of their pregnancies

>were monitored closely by a high risk ob/gyn who has quite a bit of

>experience treating short statured women. Botton line is that RSS is

>so rare that there isn't enough anecdotal evidence, much less

>research, to form a definitive answer on whether or not RSS women in

>general can conceive and give birth. However, I know it is possible

>and has been done by some.

>

>Hope this helps,

>Hillary

>RSS

>

_________________________________________________________________

Enjoy the holiday season with great tips from MSN.

http://special.msn.com/network/happyholidays.armx

---------------------------------

[Guest guest]

Eileen,

I can't even imagine what a difficult decision you and the other

parents have to make regarding ght. I'm afraid I can't offer any

solutions and comfort for all of the " what if' questions. Sometimes,

I think my parents had it a lot rougher than I did where RSS was

concerned because they're the ones that had to do all of the worrying

while I was growing up - all I had to do was worry about being a kid !

Yes, I am a student. I'm in my third year of undergraduate work at

the University of Colorado in Boulder, Colorado. I'm planning on

attending law school after I finish my undergraduate work (in English

Lit. and Philosophy) next year. I'd like to pursue a career in

disability advocacy work. I am lucky in that I never had any learning

difficulties. I was late to read (not until the end of first grade)

and that really worried my parents, but once I started there were no

problems. Of course, I always had to sit at the front of the

classroom because of my height, so I think that was an unintentional

bonus to my educational experience!

~Hillary

[Guest guest]

Hahahaha!!!! Yep...let's look at the positives of being small for a change!!Well

Imogen is only a bit behind her classmates so I'm hoping she'll do ok.Boulder

Colorado.....Now I'm thinking about Mork and Mindy!! You are probably too young

to remember them!

Anyway, I digress.......I really do love talking to adults with RSS. Especially

the really happy and positive one's like you. When Immi was little (even

littler...) I used to worry so much that she would be unhappy when she got older

and realised that she was different from everyone else......so it's lovely to

speak to people like you Kim, and Teri.AmI right that you are 4ft 1? I

would guess withoput treatment that's what Imogen would be.So it's comforting to

hear you are doing so well!!

Eileen

lapapillondegrace hillary.jorgensen@...> wrote:

Eileen,

I can't even imagine what a difficult decision you and the other

parents have to make regarding ght. I'm afraid I can't offer any

solutions and comfort for all of the " what if' questions. Sometimes,

I think my parents had it a lot rougher than I did where RSS was

concerned because they're the ones that had to do all of the worrying

while I was growing up - all I had to do was worry about being a kid !

Yes, I am a student. I'm in my third year of undergraduate work at

the University of Colorado in Boulder, Colorado. I'm planning on

attending law school after I finish my undergraduate work (in English

Lit. and Philosophy) next year. I'd like to pursue a career in

disability advocacy work. I am lucky in that I never had any learning

difficulties. I was late to read (not until the end of first grade)

and that really worried my parents, but once I started there were no

problems. Of course, I always had to sit at the front of the

classroom because of my height, so I think that was an unintentional

bonus to my educational experience!

~Hillary

---------------------------------

[Guest guest]

Hillary,

>Yes, I am a student. I'm in my third year of undergraduate work at

>the University of Colorado in Boulder, Colorado.

My Dad and brother's alma mater! A beautiful city! Do you like hiking and

skiing?

Inga

I'm planning on

[Guest guest]

Inga,

I grew up in Colorado and just couldn't bare to leave the state when I

graduated from high school, so I chose CU. I love the outdoors and

grew up in a small town that was less than an hour from a major ski

resort, so, yes, I'm lucky enough spend a lot of time on skis !

~Hillary