Pregnancy

[Guest guest]

In a message dated 5/15/2004 9:45:37 AM Eastern Daylight Time,

lfitzger@... writes:

> Had I known that I had mito, I would have

> gone the route of adoption. You are wise to be thinking

> ahead and discussing

> this with your doctors.

Hi Laurie, Alice, and ,

I really appreciate you sharing your experiences about your pregnancies. This

is a topic that my boyfriend (future fiance and husband) have talked about a

lot. It really is something that I have always wanted but I just don't think

that my body would be able to handle it and if I do get through it, would I then

be so exhausted that I wouldn't be able to care for the child? These are hard

questions that I am not sure we will ever know the answers to, but I feel like

discussing it now helps us plan wisely for our options in the future.

Malisa

[Guest guest]

Dear malisa,

Please bear in mind that i am not diagnosed, but my neurologist and I

believe it is mito. The biopsies and MRI's have been inconclusive so

far.

My first pregnancy ended in miscarriage at 3 months. The second, I

was very tired but just figured that was normal for being pregnant. I

was 32. After was born, I was so exhausted but tried to hide

that fact because I didn't want to look like I wasn't coping.

2 years later I finally felt well enough to have another child, got

pregnant right away, and felt very, very tired again by the time I

was 3 months pregnant, and again just assumed it was from being

pregnant. I was 35 then. When I was 6 months pregnant I started

having dizzy spells, which I have to this day. They resemble absence

seizures. When was 3 months old I asked my doctor to run

tests. He suggested low thyroid. Then I got in the whole doctor

referral thing and finally saw a neurologist( who specializes in MS )

when was 9 months old. He thought it was mito or a calcium

channelopathy at the first visit. The only things that seem to help

are the mito cocktail, potassium, amantadine and sleep.

I would have loved to have a third child, but my husband thought it

would kill me. Seriously. When was 3, I babysat at my house

about 2 hours for a friend with an infant. I was so worn out that I

told my husband he could get the vasectomy he wanted. After doing

dishes for an hour at a community supper, I was very hot, tired and

had a bad headache, I had a grand mal type seizure 5 years ago. My

children witnessed this and are still afraid I'll have another.

I would not say my illness is worse than 5 years ago, but I cannot

stand for more than about a minute before my legs are exhausted. I

use a walker on my bad days. I love my children, and am glad I had 2.

I don't know what your energy level is like, Malisa. That has been

the hardest part for me. I always feel inadequate with children up to

5 years, because they require so much energy. My children are 9 and

12, can help with household chores, food preparation, laundry, cut

the lawn, get the mail, vacuum etc. So i have less chores than 5

years ago.

My sister adopted 2 beautiful children from Romania because she had

an infertility problem and loves them so much. Whatever your choice,

you will be a happy mother. If I knew then, what I know now, I

probably would have adopted as well. I have never in my life ever

felt as exhausted as when I was pregnant and the 2 years following

each pregnancy. I will be praying for you. It is good for you and

your boyfriend to consider the options available.

Love, thelma

[Guest guest]

In a message dated 5/15/2004 8:41:17 PM Eastern Standard Time,

justagram@... writes:

I want to be sure to say that if I had it to do over again, I would without

question. My feelings are that every step we take in life is a chance. Had I

not gone had my children - regardless of whether I knew about the disease or

not - I would have missed a very special part of my life.

Hi Alice,

Thank you for this reminder as well. My boyfriend and I have thought about

probably every aspect of having children and have had many conversations about

it and I am sure we will have many more in the future. I often think about

what I would be missing out on if I decided not to have children and my

boyfriend

really wants our genes used. We have talked about maybe finding a surrogate

mom to carry our child, but use our genes. I had a muscle biopsy in Atlanta

in the Fall to hopefully determine whether I have mito and what kind I have,

but the biopsy was inconclusive so I don't know if this is maternally inherited

for me. I may not know for some time since they won't do the DNA testing

without knowing what complex is affected. Sigh. I know I will do what is right

for

me at the time I need to make all of these decisions. Thanks again for all

your insights!

Malisa

[Guest guest]

In a message dated 5/16/2004 5:45:39 PM Eastern Standard Time,

mtshaw@... writes:

I love my children, and am glad I had 2.

I don't know what your energy level is like, Malisa. That has been

the hardest part for me. I always feel inadequate with children up to

5 years, because they require so much energy.

Hi Thelma,

This is a big concern of mine, as well. Every year I notice a small decline

in my energy level and my body's ability to keep up with any type of activity.

Some days it is enough just to focus on me, much less have to worry about

another person. I know my boyfriend will be a wonderful father and would help

out

quite a bit, but the responsibilities that would occur while he's at work

would still be mine. I have talked to other young adults with mito about some

of

these issues and it is really hard to think about my future with all the

excitement and anticipation that it deserves when I am not sure how my body will

be feeling. Taking things day by day and in baby steps (as a and I

often say) really helps me. In several years, after I am married, I will have to

see how my body is and make a decision then about whether I am healthy enough

to mother a child even if it's through adoption. Does anyone know if adoption

agencies will even let people adopt a baby if one parent isn't healthy?

Thank you so much for all your kind thoughts and prayers.

Malisa

[Guest guest]

I have only one child but it is because I am really not good with children, not

because of the melas. My sister was pregnant twice, both premature and only one

lived. She was very good with children, wanted more.

I chose not to have anymore before we even knew that my sister and subsequently

me and my son have melas. My mother also certainly had it--she died at age 49,

my grandmother lived to 95. My one aunt died at 56, my other aunt and uncle are

in there late 60's now.

After I found out in 1997 when my son was 5 I did for a moment think about

having another child as my husband wanted one. But, as I said I am not very

good with them.

Dr Tick said that there are not any real tests or anything to know what

percentage of the melas you will pass on and how it will effect a child. It

affects each person differently depending where and how concentrated the bad

mitochondria are.

But, my sister I do not believe really had any problems with her pregnancies

other than going into labor at 26 and 29 weeks. She also had very short labors.

She was 5 ft, 105 lbs. Her boys were 1 lb 8 oz and 1 lb 12 oz. Nick is now 12

and doing fine in school and physically.

I did not have any real problems except my feet were swollen at about month 8

and they decided to induce labor 2 weeks early because the baby did not have a

lot of fluid around him. He was 7 lb 11 oz. My labor was about an hour long.

I am 5 ft 3 in and about 130 lbs--bigger than my sister and mother. My mother

also had preemies, me and a baby that died. I weighed 3 lbs, my sister 5, my

brother 4. My aunt and grandmother also had preemies.

I guess my advice to you is if you are good with children and really want to use

your genes then do not let the mito get in the way. If the child is affected by

mito I am sure you will love it with all your heart. Maybe there will be more

doctors educated by then.

Janet Sample

Re: pregnancy

> In a message dated 5/15/2004 8:41:17 PM Eastern Standard Time,

> justagram@... writes:

> I want to be sure to say that if I had it to do over again, I would without

> question. My feelings are that every step we take in life is a chance. Had I

> not gone had my children - regardless of whether I knew about the disease or

> not - I would have missed a very special part of my life.

> Hi Alice,

> Thank you for this reminder as well. My boyfriend and I have thought about

> probably every aspect of having children and have had many conversations about

> it and I am sure we will have many more in the future. I often think about

> what I would be missing out on if I decided not to have children and my

boyfriend

> really wants our genes used. We have talked about maybe finding a surrogate

> mom to carry our child, but use our genes. I had a muscle biopsy in Atlanta

> in the Fall to hopefully determine whether I have mito and what kind I have,

> but the biopsy was inconclusive so I don't know if this is maternally

inherited

> for me. I may not know for some time since they won't do the DNA testing

> without knowing what complex is affected. Sigh. I know I will do what is right

for

> me at the time I need to make all of these decisions. Thanks again for all

> your insights!

> Malisa

>

>

>

[Guest guest]

Hi Alice, You testament to your children here is very beautiful. I think

that it is a blessing when we don't know what is going to transpired in the

children that are born. In our need to control our destiny we tend to make

choices where choices shouldn't be made. God knows the blessings of the

very things that we fear and try to avoid.. It makes me think of the

Weaver's Poem that says it so well:

The Weaver

My life is but a weaving

Between my Lord and me,

I cannot choose the colors

He worketh steadily.

Oftime He weaveth sorrow,

And I in foolish pride,

Forget He Sees the upper

And I , the underside,

Not till the loom is silent

And the shuttles cease to fly,

Shall God unroll the canvas

And explain the reason why.

The dark threads are as needful

In the Weaver's skillful hand

As the threads of gold and silver

In the pattern He has planned.

----Author unknown

_____

From: Alice

Sent: Saturday, May 15, 2004 8:41 PM

To:

Subject: Re: pregnancy

Importance: High

Malisa,

I want to be sure to say that if I had it to do over again, I would without

question. My feelings are that every step we take in life is a chance. Had

I not gone had my children - regardless of whether I knew about the disease

or not - I would have missed a very special part of my life. When was

born, he was a challenge from the first day on.

was a sickly child but a wonderful little girl who has grown into a

beautiful and loving wife and mother. She is now working on her PhD and

will very likely one day be working with Mito diseases.

Larry presented with some issues but not any that could not be handled. He

and his wife have a wonderful marriage with 7 beautiful children. He has a

natural ability with computer technology and has astounded many with his

skills. He founded one of the very first bulletin boards that evolved into

listservs like this one.

was a child that required 24/7, only slept every other night and was

total care and still is. He is our angel for he can do no wrong. There's a

special place reserved for him. There was no other member of our family that

taught us more than . My other children grew up with hardships but

they learned pure love and true compassion because their brother was .

When I found myself pregnant with Cindy, the doctors were very concerned

that she would be another child much like . As they said, the chances

were very high. At that time, there was no way to test to see if she could

be. They advised me to have an abortion. I refused. I have made a few good

decisions in my life but that one was probably the best one. The joy that

she brought me after cannot be measured. She still brings great joy

not only to me but to the rest of her family. Her ability to handle tough

situations has made me very proud. I simply can't imagine my life without

all four of them.

I'm not trying to confuse you. I just want you to know all my feelings.

This is very important to me. I'm sure you'll do what's right for you both

physically and mentally. There are many very precious children out there

who need good parents. Good luck with this very hard decision.

Alice

These are hard questions that I am not sure we will ever know the answers

to, but I feel like discussing it now helps us plan wisely for our options

in the future. Malisa