Pregnancy questions

[Guest guest]

Hi All,

This is a word of warning. Many people have already heard my story - but here it

comes again for the newbies.

There are several people on the list who have SMA and who lead happy lives as

mothers. I wish all the best in the world for them. My story is different.

I have SMA 2, I sit in a powered wheelchair and need help with most activities

of daily living. I am married to a wonderful non-disabled man. I had never been

on a respirator and I weigh 40 kgs (roughly 80 lbs). Back in 1995, we wanted to

set up a family and, in no time, I became pregnant. I could tell stories of

doctors asking if I wanted an abortion since they could not see the pregnancy

was very much planned. I of course explained that I knew what I was doing.

The pregnancy went well for the first four months. Then I started to notice some

discomfort and I lost my appetite. During the whole time, I was carefully

monitored by a university hospital, and the oxygen levels in my blood indicated

that everything was fine. In January 1996, after almost six months of

pregnancy, I started coughing a little. Because of the pregnancy, we acted on

the first sign and went to hospital. My condition got worse within 24 hours. I

had pneumonia, I was not breathing enough and was put on a respirator. The

respirator did bring adequate relief and the oxygen in my blood was way below

adequate.

In 48 hours after I had entered the hospital, I gave birth to a still-born son.

Our baby had died in the womb because of lack of oxygen.

There was no chance the doctors could have performed a C-section earlier, since

at first, there were no problems. On the other hand, if a C-section had been

attempted after I had been admitted to the hospital, it might have meant the

loss of two lives instead of one.

After the stillbirth, I stayed in the intensive care unit of the hospital for

six weeks. At first, there was no certainty as to whether I would survive or

not. My husband stayed in the hospital with me all days. I struggled, but very

gradually, my condition began to improve.

After two months, I was weaned off the respirator, and was released from the

hospital and two and half months. I had survived hell and my husband had been

there with me.

Physically, I am today much the same as I was before the episode. I do not need

respiratory support anymore. Emotionally, things are not the same.We still mourn

for our son that we never saw alive. We do not have children.

Life goes on. My husband and I, we are very devoted to each other. I work full

time in the disability movement which has now become my devotion.

What I want to say is that we are different, each of us with SMA. We have to

make our own decisions. For me, the decision was not to try again - for fear of

even worse.

Pregnancy for anyone with SMA requires a great deal of planning. When you plan,

find out as much as you possibly can. There are stories like and there are

stories like me - the outcome depends on many things and cannot always be

predicted by doctors nor by anyone else.

I wish every one of us who so desired could become mothers. The truth is that

for all of us, biological motherhood may still not be an option.

If you have any questions, you can mail me or the list.

regards

Taya from Finland, Northern Europe

Taija Heinonen

Kyyhkysmaki 22 A 1

02600 Espoo

Finland

tel. +358 (0400 911 686

e-mail: taija.heinonen@...

URL:http://personal.inet.fi/koti/juha.heinonen/

Re: Your Pregnancy Questions

> Will -

> > how big were your babies when they were born?

>

> My first daughter was 7lb 4oz. My second was 6lbs 4oz.

>

> > and where you able to keep them full term?

>

> Yes, they were both born by scheduled C-section around the 39th week.

>

> > did you have any problems with your legs during your pregnacy?

>

> Not anything unusual. I wore anti-embolism hose with my second

> daughter & it helped keep swelling down.

>

>

>

>

>

[Guest guest]

In a message dated 2/11/2003 1:23:17 PM Central Standard Time,

taija.heinonen@... writes:

> I wish every one of us who so desired could become mothers. The truth is

> that for all of us, biological motherhood may still not be an option.

I don't think any of us have a skewed reality that pregnancy will be easy or

without numerous risks. Biological children *honestly* doesn't mean any more

than if we adopted or chose surrogacy. I'm pregnant now and will handle this

the best way I can. I know how awful losing a baby is, but I can't change

what may happen. I pray to all the gods there are that we will survive.

What I need now is support, not negativity.

[Guest guest]

Congratulations on your pregnancy. It is an amazing time! I have 3

boys ages 6, 4, and 10 months so I've had my share of pregnancy

experiences. I can share what it is I know from my experiences and

information from my doctor during my pregnancies.

Joint pain is pretty common during pregnancy due to the extra

hormones in the body. The hormones work to loosen joints to enable

the pelvis to expand during delivery. Also, the addition of extra

weight and the body's changing center of gravity can all contribute

to the aches and pains of pregnancy. The good news is, I at least did

not have the pain during the entire pregnacy. It got better by the

halfway point. Another thing to note...some of the books I read

recommended not sleeping with an electric blanket or heated waterbed

during pregnancy due to increased chance of overheating the fetus and

exposing it to the electical currents. I really don't know if there

is any real merit to that information or not but I thought I'd just

pass it along.

Swelling is also common due to the extra hormones and fluid retention

that occurs during pregnancy. Avoiding sodium and drinking extra

water to flush out the body can help somewhat. The only time you

should worry is if you have sudden and extreme swelling in the

extremeties particularly after about the 5 month point because that

can be an indication of pre-eclampsia. I sent you the link to an

article that has some very useful information about this subject.

Do you yourself have SMA? I don't know if having SMA makes any of the

pregnancy symptoms more severe, but I would imagine that it would be

a bit more difficult since the body already has the physical

challenges and weakness prior to pregnancy.

What I can say is that for the most part pregnancy is a truly amazing

experience, however it is not always comfortable. The good thing is

that all of the unpleasant symptoms that we experience are usually

just the body's normal way of adjusting to pregnacy and physically

preparing it for the miraculous moment of childbirth. Enjoy every bit

of it that you can. Best wishes for a healthy pregnancy, a beautiful

birth experience and a happy and healthy baby!

Amy

mom to - age 6 1/2 (SMA free),

Sam- age 4 1/2 (SMA type II-III),

- age 10 months (SMA free).

>

> Hi all,

>

> This will not be the last of my many pregnancy questions so I hope

I

> don't drive you mommies crazy . I have 2 questions today:

>

> 1) I am not sleeping well at all for the last week or so. My knees

> and my feet seem to get pressure points easier than before. I am

also

> sort of sore all the time. I am in a heated waterbed. Any

> suggestions?

>

> 2) My hands were a little puffy yesterday but are normal today.

> Should I be worried about this? Is there anything I need to change

in

> my diet?

>

> Thanks guys!

>

>

>

[Guest guest]

In a message dated 11/9/2006 11:31:39 AM Eastern Standard Time,

dvlwksp@... writes:

1) I am not sleeping well at all for the last week or so. My knees

and my feet seem to get pressure points easier than before. I am also

sort of sore all the time. I am in a heated waterbed. Any

suggestions?

2) My hands were a little puffy yesterday but are normal today.

Should I be worried about this? Is there anything I need to change in

my diet?

Get used to it? LOL No, I'm kidding... kind of. Every joint seemed to

ache when I was pregnant, too. The stomach/intestinal pains were intense as the

babies grew. I've been kind of sad knowing that I'll never have another baby,

but all I need to do is think back! Whew. =)

I'd eat a low sodium diet and just keep an eye on the swelling. Could be

(but probably ISN'T) indicative of rising blood pressure.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

[Guest guest]

> 2) My hands were a little puffy yesterday but are normal today.

> Should I be worried about this? Is there anything I need to change in

> my diet?

Sorry I don't have any good ideas for your first question.

I didn't really have a lot of pain during my pregnancies.

But as for your 2nd question, some swelling is normal,

even for mommies without SMA. If you limit sodium

intake and soda it might help reduce it/keep it under

control.

Jenn

[Guest guest]

Amy,

Thanks for the information. I have SMA Type I and this is my first

pregnancy. I am glad to hear that what I am experiencing is

probably normal. I am probably a little over-worried about things

but I don't want to do anything to hurt the baby. Due to a back

injury from a car accident and the muscle contractures from my SMA,

I cannot tolerate a normal bed. My doctor said that my waterbed

cannot hurt the baby but thanks for the concern.

Jenn,

Thanks for the tip! I tried to cut out pop today; just been

drinking water and Kool-aid

> >

> > Hi all,

> >

> > This will not be the last of my many pregnancy questions so I

hope

> I

> > don't drive you mommies crazy . I have 2 questions today:

> >

> > 1) I am not sleeping well at all for the last week or so. My

knees

> > and my feet seem to get pressure points easier than before. I

am

> also

> > sort of sore all the time. I am in a heated waterbed. Any

> > suggestions?

> >

> > 2) My hands were a little puffy yesterday but are normal today.

> > Should I be worried about this? Is there anything I need to

change

> in

> > my diet?

> >

> > Thanks guys!

> >

> >

> >

>

[Guest guest]

> Jenn,

> Thanks for the tip! I tried to cut out pop today; just been

> drinking water and Kool-aid

>

>

Good luck to you. I'd have a heck of time now

trying to give up pop!

Jenn

[Guest guest]

Hi all! I sent the following email to Gaby, but wanted to throw it out to y'all

as well to see if anyone had the same experiences or concerns/problems. Thanks

in advance for any help you can give!!!

Gaby,

I am 8 months out from my VSG and just found out that I am almost 6 weeks

pregnant. Not the best timing on my part, but it is what it is!

I have a few questions that I'm hoping you can help me with.  My OB isn't that

" verse " on the sleeve and I have some concerns with being treated

conventionally.

My #1 concern is the gestational diabetes test. I have polycystic ovarian

syndrome and am also still considered obese, so they want to do this test

earlier than usual.  My concern is that I do not eat a lot of sugar on this diet

and the few occasions that I have, it made me terribly sick and I experience

dumping-type symptoms. I am concerned with taking this test with the sugary

drink because of the issues I have with sugar and in turn, making me " fail " the

test....or even going into a coma with all that sugar!! Do you know anything

about this test for sleeve patients or have any other suggestions for monitoring

gestational diabetes during pregnancy without this test that I can recommend to

my physician?

#2: I have heard that a deficiency with the sleeve is folic acid which is

obviously important while pregnant.  Are there any other deficiencies that I

should be concerned about and are prenatal vitamins typically enough or should I

have additional supplements?

#3: my physician says that I need to be consuming 2200 calories daily while

pregnant. I told her that this was an impossibility with my sleeve and she

didn't like that answer...can you give me a more realistic guideline? She also

does not want me losing any weight, which again (especially these first few

months while the fetus weighs next to nothing) seems like an impossibility. Do

you have any experience with weight loss during pregnancy? I feel as though if

I'm eating right and my vitamin levels are good, it should not hurt to lose

unhealthy fat??

I will probably post this on the forum to see if anyone else has and experiences

or suggestions, but I would really like to know what you or Dr. Aceves thinks.

Thank you so much!

Krista 

Sent from my iPad