Re: Pregnancy and SMA III.....

[Guest guest]

In a message dated 6/27/2003 7:00:40 PM Central Daylight Time,

desiree_parisien@... writes:

> My husband and I are trying to start a family. I am looking for

> anyone who has children and who has SMA II or III, that may be able

> to give me some advice on what I should expect along the way.

> Regarding pregnancy, challenges I may face, loosing strength after

> birth. If anyone can help, that would be great. Thank you in

> advance!

I have type II and am currently 24.2 weeks pregnant. My first trimester was

when I felt " weakest, " but I attribute that to my 24/7 nausea and major

decrease in caffeine intake. Now I'm just very uncomfortable because of this

huge

belly pressing on me (I'm 5'-5'1 " and 50lbs, but she is growing great.) I'd

say your biggest challenge, depending upon your level of weakness now, will be

finding supportive and knowledgeable doctors. I have problems being

intubated/extubated, so my c-section will be by far the biggest obstacle.

Doctors

predicted I'd be on a vent by 16-20 weeks because of my very low VC, but I'm

doing

fine so far. There are 3 other moms with SMA on here and I'm sure they'd be

willing to chime in, too. Other than that, no one responds to these threads

as I get the feeling it's a touchy issue. Good luck to you and keep us

updated!

Amy

[Guest guest]

> My husband and I are trying to start a family. I am looking for

> anyone who has children and who has SMA II or III, that may be able

> to give me some advice on what I should expect along the way.

> Regarding pregnancy, challenges I may face, loosing strength after

> birth. If anyone can help, that would be great. Thank you in

> advance!

Hello, My name is Chad Rath I have SMA type 3, I am 24 yrs old And I

have a beautiful daughter Zoe who is 16 months old now, well I cannot

offer any advice on the pregnacy aspect of it as I can not give

birth, (Sorry bad joke I know)but as the challenges go their are

plenty its hard to explain in detail but feel fre to contact me about

anything, my hardest part is getting her up and down you lifting her

and/or taking her anywhere the best advice I can give is take

everything slow, try not to get fustrated and you'll find what works

best for you(everyones diffrent)I hope this helps any more questions

just ask Chad

[Guest guest]

In a message dated 6/27/2003 11:37:35 PM Pacific Standard Time,

blueyedaze@... writes:

> There are 3 other moms with SMA on here and I'm sure they'd be

> willing to chime in, too. Other than that, no one responds to these

> threads

> as I get the feeling it's a touchy issue.

I think it's more of the fact that nobody else has much to contribute... I

love hearing about all the SMA women having children though! I don't think I'm

brave enough myself, but I fully support those who choose to do so and I'm all

about defying rude doctors. :-)

~e~

[Guest guest]

I have SMA 2 and have two daughters (ages 6 years and almost 10

years). Rather than rewriting everything here, I have a web site with

info:

http://www.isoc.net/brokeninside/nekrosys/

This page of mine deals especially with the odditities & difficulties

of my pregnancies & birthing experiences:

http://www.isoc.net/brokeninside/nekrosys/Epistles.htm

I'd also be willing to talk about specifics via email. It can be a

kind of 'hot topic' on this newsgroup, as Amy mentioned, for a variety

of reasons.

Jenn

> My husband and I are trying to start a family. I am looking for

> anyone who has children and who has SMA II or III, that may be able

> to give me some advice on what I should expect along the way.

> Regarding pregnancy, challenges I may face, loosing strength after

> birth. If anyone can help, that would be great. Thank you in

> advance!

[Guest guest]

Nice sites

M. Rudolph

Louisville, Kentucky 40214

E-Mail: turbokev@...

Web site: http://www.turbokev.com

Instant Messengers:

AOL: kyprincecharming ICQ: 28414413

MSN: turbokmr@... : turbokev

Re: Pregnancy and SMA III.....

I have SMA 2 and have two daughters (ages 6 years and almost 10

years). Rather than rewriting everything here, I have a web site with

info:

http://www.isoc.net/brokeninside/nekrosys/

This page of mine deals especially with the odditities & difficulties

of my pregnancies & birthing experiences:

http://www.isoc.net/brokeninside/nekrosys/Epistles.htm

I'd also be willing to talk about specifics via email. It can be a

kind of 'hot topic' on this newsgroup, as Amy mentioned, for a variety

of reasons.

Jenn

> My husband and I are trying to start a family. I am looking for

> anyone who has children and who has SMA II or III, that may be able

> to give me some advice on what I should expect along the way.

> Regarding pregnancy, challenges I may face, loosing strength after

> birth. If anyone can help, that would be great. Thank you in

> advance!

[Guest guest]

In a message dated 6/28/2003 1:29:05 PM Central Daylight Time,

PurplGurl3@... writes:

> I think it's more of the fact that nobody else has much to contribute... I

> love hearing about all the SMA women having children though! I don't think

> I'm

> brave enough myself, but I fully support those who choose to do so and I'm

> all

> about defying rude doctors. :-)

Perhaps that could be it, too. Maybe you're just not as crazy as the rest of

us. I wish I could just relax and enjoy being pregnant, but I do find

myself worrying about dying a lot more now than I ever did before. I'm really

healthy aside from having SMA, so I didn't dwell on the mortality from

complications/respiratory issues. I've resolved myself to the fact, though if I

do

die, I'll die giving life and nothing could be more worth it than that.

[Guest guest]

In a message dated 6/28/2003 5:06:28 PM Eastern Standard Time,

nekrosys@... writes:

> It can be a

> kind of 'hot topic' on this newsgroup, as Amy mentioned, for a variety

> of reasons.

>

>

Why is this such an issue nobody wants to talk about? Did I mss something?

s the Unique Princess

[Guest guest]

Please remove me from this list. Good Luck to you all.

Re: Re: Pregnancy and SMA III.....

In a message dated 6/28/2003 5:06:28 PM Eastern Standard Time,

nekrosys@... writes:

> It can be a

> kind of 'hot topic' on this newsgroup, as Amy mentioned, for a variety

> of reasons.

>

>

Why is this such an issue nobody wants to talk about? Did I mss

something?

s the Unique Princess

[Guest guest]

s -

Different people on this list have had different experiences with

getting pregnant or being pregnant. Some have had a relatively easy

time, others have gone medically through hell and back only to end up

miscarrying or losing their baby. I have been on both sides of the

fence. I almost died giving birth to my 1st daughter and spent 9

weeks more in the hospital. I miscarried a second child. And I had a

relatively easy birth with my 3rd. I know from offlist emails I have

received after relating my experiences, that it is very hard for

people who are in the later group to sit by and watch while others

romanticize what it is like to bear and rear a child. At the same

time, it is not easy for those who are or expect to get pregnant soon

to deal with all the gloom and doom stories. As a result, we don't

talk about it that much cuz it is like opening a big can of worms.

Jenn

> Why is this such an issue nobody wants to talk about? Did I mss

something?

[Guest guest]

In a message dated 6/30/2003 12:43:06 PM Pacific Daylight Time,

alrt@... writes:

> Some of us are less talkative on this topic because we're not planning to

> get pregnant.

Yeah. It might be my age talking but I just don't want kids. I can barely

take care of myself let alone a baby. That feeling might change in the future

but

I think it would be selfish of me to have a baby. I can't hold it, change

it's diaper, or support it financially so yeah, not all woman on this list are

jumping at the chance to get pregnant.

[Guest guest]

s -

Different people on this list have had different experiences with

getting pregnant or being pregnant. Some have had a relatively easy

time, others have gone medically through hell and back only to end up

miscarrying or losing their baby. I have been on both sides of the

fence. I almost died giving birth to my 1st daughter and spent 9

weeks more in the hospital. I miscarried a second child. And I had a

relatively easy birth with my 3rd. I know from offlist emails I have

received after relating my experiences, that it is very hard for

people who are in the later group to sit by and watch while others

romanticize what it is like to bear and rear a child. At the same

time, it is not easy for those who are or expect to get pregnant soon

to deal with all the gloom and doom stories. As a result, we don't

talk about it that much cuz it is like opening a big can of worms.

Jenn

Although I agree with most of what you said Jenn " Different people on

this list have had different experiences with getting pregnant or

being pregnant. " I believe these things should be talked about if

only for fact that we almost all of us have the same disability (SMA

1, 2, or 3), and that we can offer both good and bad for all of us

which give other people a form of ideas of what it may be like to

bear or take care of a child, but we must remember that everyone is

different what happens to me or you is not nessasrely what will to

other people, and that we all will have different expierences, all

that is being offered is a expierence of our life that promotes a

idea to another person, I believe you can discuss anything becouse we

can learn from others expierences just as well as ourselves and it

can promote a better lifestyle for everyone, thats what this grup is

about discussing things others without our disability dont, wont, or

can never understand I am not trying to upset anyone on here its just

my belife and I hope everyone can understand what I am trying to get

at thank you

Chad Rath

MInneapolis, MN

[Guest guest]

Some of us are less talkative on this topic because we're not planning to get

pregnant. It was a tough decision, but when I was 22 I decided not to. I don't

feel a need to have my " own " baby that looks like me or my spouse, though, my

sister offered to be a surrogate. Also, I decided not to put my body under that

much stress or risk. Are/were any of you mommies out there on a vent before you

got pregnant? I'm afraid I'd be too ill to care for my baby after such an

ordreal...Or that I'd die (though, this is a risk for ALL parents). Someday I

may adopt and would love to hear from folks who've done this. I'm also really

enjoying all the kids already in my life.

Alana

[Guest guest]

in fact, birth control has been a challenge. i can't take estrogen because i'm

at a higher risk for blood clots since i don't move around much. i have done

fine with depo provera injections every 3 months, though, it's tough to get to

the dr. during the winter. now i take a progestin-based pill. i'm not a fan of

condoms - they don't feel so hot and they break too often for my peace of mind.

i am adament about NOT getting pregnant because i DO want a child and would not

want to face the emotional turmoil connected with having an abortion.

alana

-- Re: Re: Pregnancy and SMA III.....

not all woman on this list

are

jumping at the chance to get pregnant.

[Guest guest]

I think that motherhood is one of the most selfLESS things you can do. Those

who can't offer the physical care to their children still make sure those

needs are met, as evidenced by the mommies on this list. And there's a lot more

to

being a parent than that. I would love to have a family of my own. If someday

I have a husband and the means to do so, I'd look into going the adoption

route. That's just me...

~e~

[Guest guest]

Chad -

I think I understand & agree with what you are saying. I just know

that I've been 'blasted' in the past for sharing my experiences on

this topic. I'm a little 'gun shy'.

Jenn

> Although I agree with most of what you said Jenn " Different people on

> this list have had different experiences with getting pregnant or

> being pregnant. " I believe these things should be talked about if

> only for fact that we almost all of us have the same disability (SMA

> 1, 2, or 3), and that we can offer both good and bad for all of us

> which give other people a form of ideas of what it may be like to

> bear or take care of a child, but we must remember that everyone is

> different what happens to me or you is not nessasrely what will to

> other people, and that we all will have different expierences, all

> that is being offered is a expierence of our life that promotes a

> idea to another person, I believe you can discuss anything becouse we

> can learn from others expierences just as well as ourselves and it

> can promote a better lifestyle for everyone, thats what this grup is

> about discussing things others without our disability dont, wont, or

> can never understand I am not trying to upset anyone on here its just

> my belife and I hope everyone can understand what I am trying to get

> at thank you

>

> Chad Rath

> MInneapolis, MN

[Guest guest]

I don't feel any need to have my own kids either. I'm really glad because

some people I know

will go to great links just to have their own baby. I know some of my

friends who got seriously

depressed because they were having trouble getting pregnant. I am VERY

grateful that the

maternal instinct isn't something that I seem to have. I also don't feel

like I would be a very

good parent because I can't even take care of myself. It would be

irresponsible and selffish of me

to have any business parenting. My friends that have kids won't even let me

watch them alone

because I can't pick them up or help them. I do wonder how the mom's on this

list with SMA manage because

to me it seems so impossible to me.

_________________________________________________________________

MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*.

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[Guest guest]

In a message dated 6/30/2003 2:43:27 PM Central Daylight Time,

alrt@... writes:

> Some of us are less talkative on this topic because we're not planning to

> get pregnant. It was a tough decision, but when I was 22 I decided not to. I

> don't feel a need to have my " own " baby that looks like me or my spouse,

> though, my sister offered to be a surrogate. Also, I decided not to put my

body

> under that much stress or risk. Are/were any of you mommies out there on a

> vent before you got pregnant? I'm afraid I'd be too ill to care for my baby

> after such an ordreal...Or that I'd die (though, this is a risk for ALL

> parents). Someday I may adopt and would love to hear from folks who've done

this.

> I'm also really enjoying all the kids already in my life.

After losing our first baby, we decided not to try for a biological child

again either. As we all know, not everything in our lives goes according to

plan

and here I am pregnant again. =) The way I see it is I'm giving my girl a

chance at life. I could've had an abortion because of the what-ifs and

uncertainties, but I may as well have killed myself too. I've been on a vent 3

times, though not since 1989. We were considering adoption (still are once

Olivia's older), but there's a whole ton of issues that go along with that, too.

[Guest guest]

In a message dated 6/30/2003 3:12:09 PM Central Daylight Time,

DeTannous@... writes:

> Yeah. It might be my age talking but I just don't want kids. I can barely

> take care of myself let alone a baby. That feeling might change in the

> future but

> I think it would be selfish of me to have a baby. I can't hold it, change

> it's diaper, or support it financially so yeah, not all woman on this list

> are

> jumping at the chance to get pregnant.

So do you consider us selfish for becoming parents? I don't think anyone

with half a brain " jumped " into getting pregnant. It's far too serious a

decision to be taken lightly.

[Guest guest]

I was on the pill and I got a blood clot a month after starting the pill. So

yes Alana birth control is an issue. What do the rest of you do for birth

control?

Curious,

Kimi

[Guest guest]

In a message dated 7/1/2003 7:01:59 AM Pacific Standard Time,

j0yeuxx@... writes:

> how often do you need to get the shot?

> I would love no period, but I don't think I would like

> it enough to subject myself to a needle!

I get them for the no-periods. My body's so stubborn that I have to get them

every 8 weeks. I have to admit, they do leave me sore for a couple days. (I

also have a high dose injected, so that makes it more painful than normal.) But

I think it's worth it.

~e~

[Guest guest]

What do the rest of you do for birth control?

I've been on depo for 6 years. Sometimes I think it makes me a little

mentally psycho(-er?), but it does have that 'no period' benefit.

After my 2nd c-section, I was told by my OB/GYN that my uterus was

very thin and would likely rupture if I were to be pregnant again.

(I'm not sure if this is due to the SMA?) I therefore need to NOT

have more kiddies biologically (adoption is an option). I would

really like to get my tubes tied or something but I have such weird

and adverse reactions to anesthetics, I'm afraid to pursue this.

Jenn

[Guest guest]

> how often do you need to get the shot?

I get mine every 3 months. But I like shots.

Jenn

[Guest guest]

In a message dated 6/30/2003 8:35:04 PM Pacific Daylight Time,

blueyedaze@... writes:

> So do you consider us selfish for becoming parents? I don't think anyone

> with half a brain " jumped " into getting pregnant. It's far too serious a

> decision to be taken lightly.

Some of you seem to have taken my words the wrong way. I never said that it's

selfish for any woman with a disability to have a baby... I said I thought it

would be selfish of ME. If you're disabled and have a baby then more power to

you but it's not something I'd do. Whatever the reason for having a baby (to

fill some void in your life, b/c you think it'll bring you happiness, or to

pass on your genes to the next generation), I feel like I would be putting that

baby at risk. This isn't like getting a goldfish here where feeding and the

such isn't going to be a problem. This is a human life and if I chose to have a

baby I think I should take full responsibility for it. Part of that

responsibility is bathing it and getting up at two in the morning to feed it and

not

having someone else do those things. I can't take care of myself and it's

already a stressful situation for everyone around me. Now I'm gonna add another

totally dependent person to the mix because I feel the need to reproduce? That

baby is going to be at risk before its even born. I know from now that carrying

that baby to term is going to be impossible so right off the bat it's going to

have to deal with all the stuff that preemies go through (underdeveloped

lungs and weak immune system) Being alone with the baby after it's born? Out of

the question. If it starts choking or if something else happens to it, I

wouldn't be much help. I can be there emotionally all I want for the baby but

that's

not going to change that fact. Emotional support is not going to put food into

it's belly or clothes on its back. Then there's what going to happen when

this baby become older. How are THEY going to feel? We all know what it's like

to

have to grow up fast and mature before our time; what it's like to be pushed

into adulthood. Because of that I don't think my 5 year old should have to be

taking care of me. They're little kids and shouldn't have to have that stress

or burden placed upon them. I read a book about disabled life and one chapter

focused on family members. They asked the kids how they felt and there was so

much hurt and resentment in their passages. That would all stem from my need

to have a baby and I'm just comfortable with that.

But if you want children and it works out, then good. To each their own.

[Guest guest]

Are you that insecure to care about what someone you don't even know says?

to such a degree you feel like bashing your head against the wall? who cares

what she says. shes not you and youre not her. shes speaking in reference as IF

she WERE in your position, that maybe she doesnt think she would be 'strong'

enough or capable of doing what you do. and have done. no need to get so

defensive, unless you really care what she says.

-

[Guest guest]

In a message dated 7/1/2003 8:05:08 PM Central Daylight Time,

nekrosys@... writes:

> Jenn <listening to Rob Zombie REALLY loud and thinking about bashing

> my head against a wall>

I'd prefer you bash someone else's head, Jenn. Jealousy makes people bitter,

kwim? I totally agree with what you said.