Baby after mito child

[Guest guest]

Hi all, I'm wondering whether anyone would be willing to comment on their experiences with conception and childbirth after having a mito child. Were you scared? Did you have another child with mito? What were you told about in utero diagnosis?

I turn 38 in May and my children are now 8 and 5 1/2. Oldest is pretty okay--minor behavior probs., no mito, highly intelligent. The youngest, with mito, is nonverbal and nonmobile, but has no medical complications. We are making final decisions about our family--I would like to get permanent form of birth control if we decide not to have more children.

Thanks in advance, Lori, Christian and (complex I and IV)

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[Guest guest]

got sick in Jan '04... We were assured several times over

that it wasnt genetic, but rather a post viral problem (they thought

he had post viral cerebellitis... no suspicion of mito at all).

I found out I was pregnant the day before was scheduled for

an MRI (again we were told it was a viral problem... no genetic

concerns, so we felt we were clear to try and concieve).

I was 6 weeks pregnant when we got the results, and the first

mention of Mito.

By fall '04 it was becoming more and more clear that we were dealing

with a genetic disorder, and most likely mito.

We got our official diagnosis from s muscle biopsy on January

21st '05, I was 38 weeks pregnant. Tyler was born 2 weeks late on

the 18th of February...

It was a unique experience, as the entire process took place within

the time span of our pregnancy... we had to deal with fear and

concern for , and at the same time concern and worry about

the baby and whether he will be affected.

Ultimately I decided from day one that whatever happens will happen

regardless of how much i worry about it, so I made a very concious

effort not to... (yea right).

Now that we know its genetic, and future kids may be at risk, we are

seriously considering calling it quits with biological children...

I cant bring myself to consider having my tubes tied though...

ultimately im undecided on the issue... weve decided to wait until

we know exactly what mutation has, and what the statistics

are for future kiddos (may take years i know, but my husband and i

are both only 22, so we have plenty of time).

We dont know yet if Tyler is affected yet, as he wont be tested

until late April, but until then we are assuming the best, but

staying guarded for the worst...

As far as in utero diagnosis, I was told theres no definitive test

to be done... they 'can' do an umbilical cord blood test and check

some levels, but its not a definate answer, and the risks are higher

than an amniocentesis, and it has to be done later in pregnancy...

for us any answers they could give us wouldnt change anything, so

for us it wasnt worth the risk...

HOpe that helps...

Keely (mom to , 26 months, complex 1 and Tyler, 3 weeks)

> Hi all, I'm wondering whether anyone would be willing to comment

on their experiences with conception and childbirth after having a

mito child. Were you scared? Did you have another child with

mito? What were you told about in utero diagnosis?

>

> I turn 38 in May and my children are now 8 and 5 1/2. Oldest is

pretty okay--minor behavior probs., no mito, highly intelligent.

The youngest, with mito, is nonverbal and nonmobile, but has no

medical complications. We are making final decisions about our

family--I would like to get permanent form of birth control if we

decide not to have more children.

>

> Thanks in advance, Lori, Christian and (complex I and IV)

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.7.2 - Release Date:

3/11/2005

[Guest guest]

I have been there. After Asenath was assumed to have Mito we thought,

no way would we get pregnant and take the chance to affect another child,

especially since we already had 6 children and then adopted two more,

right?! Anyway, even though we were being very careful, my cycle got all

messed up and I conceived Zipporrah. Most of my pregnancy I wasn't panicked

although there were times I worried that she too might be affected. But I

think there was some what of a protective manner about me that denied the

possibility of having another one affected to the degree Asenath was. After

all, she was my 6th and none of the others had consistent issues that led to

stroke episodes at that point that we knew of. We did have a few scares

with some of the older ones that made no sense until post Mito realization.

Anyway, when others began speaking about pregnancy symptoms that were common

amongst women carrying an affected Mito child and I too was currently having

them, I started to worry more. Then sadly almost immediately after

Zipporrah was born we knew she was affected. She didn't regulate her

temperature well, her breathing was very irregular, and her suck became bad

within the first week of life. Things only got worse from there and she had

terrible jaundice and upper-respiratory infections leading to stroke

episodes at 2 months and 4 months of age. By 4 months of age she had a

NG-tube to help with feedings and by 6 months a G-tube. And the story goes

on...

We put off a permanent solution to birth control during Zipporrah's

pregnancy as we didn't need to worry at the time and then following her

birth my husband used all his sick leave and annual on hospital visits and

Mayo trips so we again put it off. Then recently I found out I was pregnant

and miscarried before I hit 6 weeks and knew something had to be done as we

were constantly worrying about getting pregnant and affecting another child.

As I have other women's problems, this hysterectomy I am having on Monday

will serve as a permanent fix on top of solving the monthly issues I am

dealing with.

I am sorry this has gone longer than I intended, but I wanted to share

our experience. I have never regretted having Zipporrah even though she too

is affected, and I know several of the women on this list that have chosen

to become pregnant again and also have been blessed with precious children;

some affected, but most not. I think each of us have to decide within our

own hearts and together with our spouses what the choice will be. For some

of us, trying to have another child is too risky or terrifying, and for

others it is a good choice to have another. I couldn't imagine not having

Zipporrah and if I would have done something permanent before becoming

pregnant with her I would have missed so much!

I hope this helps you a little bit. I know it is a very hard

decision and can only be made with lots of thought (or by accident-LOL).

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,

Baby after mito child

Hi all, I'm wondering whether anyone would be willing to comment on their

experiences with conception and childbirth after having a mito child. Were

you scared? Did you have another child with mito? What were you told about

in utero diagnosis?

I turn 38 in May and my children are now 8 and 5 1/2. Oldest is pretty

okay--minor behavior probs., no mito, highly intelligent. The youngest,

with mito, is nonverbal and nonmobile, but has no medical complications. We

are making final decisions about our family--I would like to get permanent

form of birth control if we decide not to have more children.

Thanks in advance, Lori, Christian and (complex I and IV)No virus

found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.308 / Virus Database: 266.7.2 - Release Date: 3/11/2005

[Guest guest]

Lori,

I really wish I had a better outlook at this. You asked for our

feeling so I will share.

I am scared to death. We tried for 4 years to have our Elijah. He is

a most wanted child. At 5 1/2 months old we were crushed with the

news of how deeply affected he was. At the time the knew he had

Leighs Disease and couldn't give us more. We had planned on trying

for more children right away and it was now my nightmare. Yes!

another child affected or not would be a blessing. I just don't know

where I would find the strenght to do it again. Elijah has made it

to two years old and as affected as he was a year ago he has

surprised us all. He can't communicate in anyway. I read his face as

much as I can. It is so hard to watch him just lay there. I do what

I can to read, sing, dance and play with him as much as I can. It is

hard when I know that he can't even lift a finger to play back.

Eli is our one and only. Sometimes I am so happy that he is our only

for I see all the frustrations that other parents with both affected

and non-affected children go through. I am glad we are aloud to

focus on him. I like to think that God has plans for us to have

more. As with his Leigh's we still don't have a clue what defect

caused it. Blood, and two biopsy's haven't given them answers and we

don't know if we will ever find out. That would at least give us the

option of pre-implantation(not that we would do that)it is just

that, an option. Right now they say our chances are 0-100 no

percentage. That is too risky for me. There is of course the egg-

donation still don't know if I am willing. I try not to worry. I

want more children. I someday want to adopt. Not to go into

all kinds of my womens stuff. One thing. My doctor and I discussed

all the options and we decided to use a birthcontrol method that

would not be an issue for 5 years. What a relive it has been.

Right now our Eli is our world we spend almost every moment with

him. We joke about him being the most spoiled(he is)child ever.

These past 2years with my little Eli have been both the happiest,

saddest and longest years of my life. I am worn and yet I have

learned so much through his eyes.

Ann( mommy to Elijah 2years )

http://www.caringbridge.org/co/elijahkurtz

We also have started a non-profit in Eli's name for children

affected with Mitochondrial or metabolic illnesses! It will be a

wonderful thing for Elijah to leave behind.

It is called: Eli's Angels

http://home.comcast.net/~elis_angels/

God Bless you

[Guest guest]

I had the same experience as you, I have a 7 week old and Elie just

got her initial diagnosis from her muscle biopsy. Am going to try to

get my new baby tested as soon as possible. We are watching her all

the time, Elie didn't get symptomatic until 5 months. Trying not to

worry!!!

> > Hi all, I'm wondering whether anyone would be willing to comment

> on their experiences with conception and childbirth after having a

> mito child. Were you scared? Did you have another child with

> mito? What were you told about in utero diagnosis?

> >

> > I turn 38 in May and my children are now 8 and 5 1/2. Oldest is

> pretty okay--minor behavior probs., no mito, highly intelligent.

> The youngest, with mito, is nonverbal and nonmobile, but has no

> medical complications. We are making final decisions about our

> family--I would like to get permanent form of birth control if we

> decide not to have more children.

> >

> > Thanks in advance, Lori, Christian and (complex I and

IV)

> > No virus found in this outgoing message.

> > Checked by AVG Anti-Virus.

> > Version: 7.0.308 / Virus Database: 266.7.2 - Release Date:

> 3/11/2005

[Guest guest]

Our little guy, , is our first baby born since Grace. He is 6 months old today!!! So far we have not seen any need to be worried about mito with him. His only issue seems to be that he is most likely gluten sensitive, but we think that is from me. (I show up positive on bloodwork for it, but am negative for celiac disease, and have no sypmtoms.

We were at a similar stage you are in now, when we decided to have him. Ultimately we decided to put it in higher hands. We went without any form of chemical birth control, and only loosely used planned parenting. We had decided that if I still had not gotten pregnant in one year, then we would go foward with me getting my tubes tied. We were pregnant in 2 months!!!

Yes I was worried about another mito kid, but figured I could handle it if need so. I was told that there is no way of testing in utero. Dr.Cohen had just advised us to make sure we got all the newborn testing done. (Ohio's is pretty good.) He said if that was completely normal, then we would only go foward with testing if he was having issues.

We did decide that we would not take any more chances (and makes 5 kids) so I had my tubes tied a few months ago.

Best wishes

carrie Try the new Beta version of MSN Messenger - it's FREE!

[Guest guest]

Hi Lori,

I have a healthy 3.5 year old daughter and an 18 month old son

diagnosed with Complex I. He was born in Sept 03 and was diagnosed

via muscle biopsy in April of 2004. Before we really understood the

implications (genetic or otherwise) of this diagnosis, I was pregnant

again, a total surprise. Our daughter was born five weeks ago and

seems to be healthy so far. Since our son was symptomatic at only a

few days old, we are optimistic that the new baby will be healthy

like our older girl. But there are many days I worry. I had a lot

of faith that our new baby would be OK, but I am still cautious and

fearful. I do the same for our three year old, though--always

fretting that she will show symptoms although she's always been

healthy.

I try to think that this is just the way it is with kids. We worry

more because we have a concrete reason. But I think worry is just

part of being a parent to any type of child. I am sad to think we

probably will not have another baby (having tempted fate already) and

am not ready to say goodbye to having children either. I also told

myself when I was pregnant that at least I would KNOW what I was

dealing with if the baby turned out to be sick like our son was. I

think the not-knowing, as we did with our son for a mercifully brief

but painful time, was a lot worse than the knowing. But yes, I was

quite fearful when I was pregnant. But I also had moments of being

very hopeful and also very happy that we were giving our children

another sibling.

We did some prenatal testing but nothing that was specific to mito

(as I understand it is not available--at least not for our son's

type, which is unknown Complex I). We did take comfort in a prenatal

ultrasound that showed our daughter did not have an abnormally large

kidney, which our son did prenatally (we have never been sure if it

is related to mito or not--still an issue for him). We will bring

the baby to see our son's mitochondrial specialist in a couple of

weeks to do some urine/blood testing. There is a small concern (from

her general ped.) that her muscle tone seems low, but she was also

premature, and her tone seems nothing like my son's was at the same

age (he could not even suck a bottle and didn't hold his head up till

8 months old). I think the specialists are just being very cautious

and are also interested in seeing how she does for

informational/research purposes.

My feeling is that our kids are blessings no matter how they come to

us. Somedays this feeling was enough to give me faith that it would

all turn out OK. Other days, it didn't work that well. But I tried

to take it one day at a time. Good luck to you in your decision!

Sorry for the novel.

Whitney

mom to --18 months, Complex I, fatty acid oxidation defect, G-

tube, developmental delays, hypotonia/hypertonia

Grace and , 3.5 & 5 weeks, typical

> Hi all, I'm wondering whether anyone would be willing to comment on

their experiences with conception and childbirth after having a mito

child. Were you scared? Did you have another child with mito? What

were you told about in utero diagnosis?

>

> I turn 38 in May and my children are now 8 and 5 1/2. Oldest is

pretty okay--minor behavior probs., no mito, highly intelligent. The

youngest, with mito, is nonverbal and nonmobile, but has no medical

complications. We are making final decisions about our family--I

would like to get permanent form of birth control if we decide not to

have more children.

>

> Thanks in advance, Lori, Christian and (complex I and IV)

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.7.2 - Release Date: 3/11/2005

[Guest guest]

Hi there,

I have 4 children total, with Joe (affected complex IV) being my last.

I had 4 high risk pregnancies all with different issues, none being

related to

the previous ones all before my 31st birthday. Nothing the docs could

predict

or anticipate, now knowing that I too have the mito dx. things makes

more sense to me.

Joe was not diagnosed until he was 2 1/2 yrs old and I had already had

my tubal

due to all the complications with the 3 previous and his pregnancy

(delivered him at

only 26 weeks). The docs advised me not to ever get pregnant again as

I would be

risking my life and the life of any child I would conceive.

Would I change the decisions to have the 4 of them? Never.

If I knew then what I know now.... what would/could I have done

differently??? I

honestly couldn't tell you, but I could not imagine our lives being

complete without Joe.

Joe isn't severely affected and has been a blessing daily. We have no

idea what his future

will hold or how long we will be blessed with him. We just have

learned to take it just for

today and be grateful for all the precious moments with all of our

children(easier said than done).

I don't know if any of my others are affected or if my daughter will

risk passing this on to

her children (what tough choices) if she chooses to have children of

her own.

I'm grateful that the decision was out of my hands before I knew about

the mito.

It is a very tough and complicated decision and I will keep you and

your family in my prayers

that you might find the decision that works best for you and your

family.

Praying for good health and happiness for all of

us,

AnnMarie L. - Complex IV (pre diabetic, hypo thyroid, adrenal/endocrine

issues)

Married to my best friend Rick,

Very Busy Mom to (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP, tethered chord syndrome,

dysautonomia, and

a smile that never quits :-)

lfcutillo@... wrote:

Hi all, I'm wondering whether anyone

would be willing to comment on their experiences with conception and

childbirth after having a mito child. Were you scared? Did you have

another child with mito? What were you told about in utero diagnosis?

I turn 38 in May and my children are

now 8 and 5 1/2. Oldest is pretty okay--minor behavior probs., no

mito, highly intelligent. The youngest, with mito, is nonverbal and

nonmobile, but has no medical complications. We are making final

decisions about our family--I would like to get permanent form of birth

control if we decide not to have more children.

Thanks in advance, Lori, Christian

and (complex I and IV)

[Guest guest]

Hi there -

My daughter was diagnosed with Leigh's disease when she was 1 1/2 years-old. We asked the doctors what are chances where of having another child with the same disease and we were told we had a 1-4 chance. At that point, it was a no brainer that we would not have anymore children -even though I was only 23 at the time. For me, I couldn't live with myself if I were to knowingly carry this disease on to another child. Although it was tough knowing I would not be able to have anymore children, I felt that I shouldn't be selfish. My husband decided it would be in our best interest to adopt in the future. I don't know how long Amber will be with us (she is now 10) but I am so thankful she is in our lives and I thank God everyday for blessing us with her. There are so many people in this world who are unable to have children at all, the fact that God allowed me to have just one is good enough for me. I know now that God

gives special children to special people. I don't know why she had to have this disease, but I know that I have learned more from her in the last 10 years then I have learned in my entire life. I hope you and your husband will do alot of soul searching and come to the right decision. No matter what you decide, I am sure you both will make the best decision for you.

AM L wrote:

Hi there,I have 4 children total, with Joe (affected complex IV) being my last.I had 4 high risk pregnancies all with different issues, none being related to the previous ones all before my 31st birthday. Nothing the docs could predict or anticipate, now knowing that I too have the mito dx. things makes more sense to me. Joe was not diagnosed until he was 2 1/2 yrs old and I had already had my tubal due to all the complications with the 3 previous and his pregnancy (delivered him atonly 26 weeks). The docs advised me not to ever get pregnant again as I would berisking my life and the life of any child I would conceive. Would I change the decisions to have the 4 of them? Never.If I knew then what I know now.... what would/could I have done differently??? I honestly couldn't tell you, but I could

not imagine our lives being complete without Joe.Joe isn't severely affected and has been a blessing daily. We have no idea what his futurewill hold or how long we will be blessed with him. We just have learned to take it just fortoday and be grateful for all the precious moments with all of our children(easier said than done).I don't know if any of my others are affected or if my daughter will risk passing this on to her children (what tough choices) if she chooses to have children of her own.I'm grateful that the decision was out of my hands before I knew about the mito. It is a very tough and complicated decision and I will keep you and your family in my prayersthat you might find the decision that works best for you and your family.

Praying for good health and happiness for all of us,AnnMarie L. - Complex IV (pre diabetic, hypo thyroid, adrenal/endocrine issues) Married to my best friend Rick,Very Busy Mom to (15), (12), Cassandra (6) and Joe (5) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, anda smile that never quits :-) lfcutillo@... wrote:

Hi all, I'm wondering whether anyone would be willing to comment on their experiences with conception and childbirth after having a mito child. Were you scared? Did you have another child with mito? What were you told about in utero diagnosis?

I turn 38 in May and my children are now 8 and 5 1/2. Oldest is pretty okay--minor behavior probs., no mito, highly intelligent. The youngest, with mito, is nonverbal and nonmobile, but has no medical complications. We are making final decisions about our family--I would like to get permanent form of birth control if we decide not to have more children.

Thanks in advance, Lori, Christian and (complex I and IV) Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

I rarely post to the list, am kind of an old-timer but wanted to

share my experience with this. My mito " baby " is almost nine years

old. Adelaine (Laney) has Leigh's (complex one) and without the g-tube

and carnitor would have stopped eating and died around one. She is

profoundly affected, both physically and mentally--both areas she is in

about a 6 month range. Some areas are a little higher (she loves

Barney) some areas a little lower (no speech at all and doesn't seem

connected in any way to her hands). She is beautiful, a joy, a huge

blessing and a huge amount of work. She is now stable and really healthy.

Our second child Cecilia just turned five. She appears to be perfectly

fine. We had contemplated adoption, but felt the odds of getting a

child with special needs were fairly high that way too and that at least

with mito we knew what we were dealing with (more or less!) I was

terrified through my entire pregnancy, and so relieved that it was very

different. I suffered from low-grade depression through parts of it.

Cecilia was fine during and after birth and we were thrilled and amazed

at how healing it was to have a healthy child. And hard--because it

really forced us to realize how much we " lost " with Laney. When Cecilia

was 6 months old there was one blood test that showed a minor

abnormality (turned out to be fine) but it put me in a tailspin,

depression--antidepressants and therapy helped me recover!

I am so glad I had Cecilia. I am getting to experience parts of

motherhood that I never had with Laney (someone calling me mom and

making me artwork for example). She is the light that keeps both my

husband and myself going many of the days that are hard with Laney. It

does bring more issues...Cecilia has her own mixed feelings about her

handicapped sister...I didn't really think about dealing with that...

Having said all that we are undecided about a third. We would really

like another, but I honestly don't know if I could take it again if the

baby was affected. I now know what it is like to change 10 diapers a

day for nine years, carry a big girl around and always need to plan for

wheelchair issues when going anywhere. I also know what it is like to

have a child who actually experiences some growing up and it would be

extra hard to go through that loss again. Plus, our friends and family

do not support us having another, and the lack of support would be hard

to live with. Actually, I know I could deal with it, that we would make

the best of it, still have a loving and happy family, but I don't know

if I want things to be that hard when they don't have to be. In quiet

moments, however, I hear a baby calling...

No one can make the decision for you. And in some ways it would be

soooo much easier if we didn't understand the genetics, if the " choice "

was removed...

I know this probably doesn't help, but it does touch a special spot in

my heart and I wanted to share...

Adelaine's bus just pulled up, so off I go!

Kailing

Mama to Adelaine and Cecilia

Saline, MI

@...

Lori Cutillo wrote:

> Hi all, I'm wondering whether anyone would be willing to comment on

> their experiences with conception and childbirth after having a mito

> child. Were you scared? Did you have another child with mito? What

> were you told about in utero diagnosis?

>

> I turn 38 in May and my children are now 8 and 5 1/2. Oldest is

> pretty okay--minor behavior probs., no mito, highly intelligent. The

> youngest, with mito, is nonverbal and nonmobile, but has no medical

> complications. We are making final decisions about our family--I

> would like to get permanent form of birth control if we decide not to

> have more children.

>

> Thanks in advance, Lori, Christian and (complex I and IV)

>

>

> Please contact mito-owner with any problems or questions.

>

>

> *

[Guest guest]

--i- In Mito , Kailing

<juliacooper@c...> wrote:

> I rarely post to the list, am kind of an old-timer but wanted

to

> share my experience with this. My mito " baby " is almost nine

years

> old. Adelaine (Laney) has Leigh's (complex one) and without the

g-tube

> and carnitor would have stopped eating and died around one. She

is

> profoundly affected, both physically and mentally--both areas she

is in

> about a 6 month range. Some areas are a little higher (she loves

> Barney) some areas a little lower (no speech at all and doesn't

seem

> connected in any way to her hands). She is beautiful, a joy, a

huge

> blessing and a huge amount of work. She is now stable and really

healthy.

> i lost my 11 month old baby son lewis in dec 04,he was diagnosed

with mito,but not firmly as the tests all came back negitive.lewis

was born at 35 weeks weighing 4lbs 12ozs,he was in special care for

2 weeks as he wouldnt feed,he was tube fed for 10 days and finally

started on a bottle.we took him home when he was 2 weeks old and

everything seemed fine until he was 5 months old.at 3 months lewis

wasnt smiling or developing like our older son had.at 5 months he

was still only 10lbs and the tests begun.a nasel gastric tube was

passed and i fed him 6 times a day.lewis was given medication to

help his stiffness and he became a new baby,the crying stopped andhe

was so alert,but physically didnt develope.he had blood

tests,lumberpunch and they came back negitive for mito,he also had a

skin biopsy which we never received results for.lewis died

peacefully in his sleep.

the drs have labeled lewis with mito,but they are not certain,we are

trying for another baby and they say the chances of it happening

again are very low.our 4 year old is fine.

we dont know much about mito but would be interested in hearing from

anyone in similar situation as us.

> Our second child Cecilia just turned five. She appears to be

perfectly

> fine. We had contemplated adoption, but felt the odds of getting

a

> child with special needs were fairly high that way too and that at

least

> with mito we knew what we were dealing with (more or less!) I was

> terrified through my entire pregnancy, and so relieved that it was

very

> different. I suffered from low-grade depression through parts of

it.

> Cecilia was fine during and after birth and we were thrilled and

amazed

> at how healing it was to have a healthy child. And hard--because

it

> really forced us to realize how much we " lost " with Laney. When

Cecilia

> was 6 months old there was one blood test that showed a minor

> abnormality (turned out to be fine) but it put me in a tailspin,

> depression--antidepressants and therapy helped me recover!

>

> I am so glad I had Cecilia. I am getting to experience parts of

> motherhood that I never had with Laney (someone calling me mom and

> making me artwork for example). She is the light that keeps both

my

> husband and myself going many of the days that are hard with

Laney. It

> does bring more issues...Cecilia has her own mixed feelings about

her

> handicapped sister...I didn't really think about dealing with

that...

>

> Having said all that we are undecided about a third. We would

really

> like another, but I honestly don't know if I could take it again

if the

> baby was affected. I now know what it is like to change 10

diapers a

> day for nine years, carry a big girl around and always need to

plan for

> wheelchair issues when going anywhere. I also know what it is

like to

> have a child who actually experiences some growing up and it would

be

> extra hard to go through that loss again. Plus, our friends and

family

> do not support us having another, and the lack of support would be

hard

> to live with. Actually, I know I could deal with it, that we

would make

> the best of it, still have a loving and happy family, but I don't

know

> if I want things to be that hard when they don't have to be. In

quiet

> moments, however, I hear a baby calling...

>

> No one can make the decision for you. And in some ways it would

be

> soooo much easier if we didn't understand the genetics, if

the " choice "

> was removed...

>

> I know this probably doesn't help, but it does touch a special

spot in

> my heart and I wanted to share...

>

> Adelaine's bus just pulled up, so off I go!

>

> Kailing

> Mama to Adelaine and Cecilia

> Saline, MI

> @c...

>

>

>

> Lori Cutillo wrote:

>

> > Hi all, I'm wondering whether anyone would be willing to comment

on

> > their experiences with conception and childbirth after having a

mito

> > child. Were you scared? Did you have another child with mito?

What

> > were you told about in utero diagnosis?

> >

> > I turn 38 in May and my children are now 8 and 5 1/2. Oldest is

> > pretty okay--minor behavior probs., no mito, highly

intelligent. The

> > youngest, with mito, is nonverbal and nonmobile, but has no

medical

> > complications. We are making final decisions about our family--

I

> > would like to get permanent form of birth control if we decide

not to

> > have more children.

> >

> > Thanks in advance, Lori, Christian and (complex I and

IV)

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

> >

> > *

[Guest guest]

Thanks everyone for sharing your stories about additional children after the

mito diagnosis. I really appreciate it. Gave me lots to think about.

Take care! Lori, (mild ADD, mood probs) and (complex I and IV)

Re: Baby after mito child

>

>

>

> --i- In Mito , Kailing

> <juliacooper@c...> wrote:

>> I rarely post to the list, am kind of an old-timer but wanted

> to

>> share my experience with this. My mito " baby " is almost nine

> years

>> old. Adelaine (Laney) has Leigh's (complex one) and without the

> g-tube

>> and carnitor would have stopped eating and died around one. She

> is

>> profoundly affected, both physically and mentally--both areas she

> is in

>> about a 6 month range. Some areas are a little higher (she loves

>> Barney) some areas a little lower (no speech at all and doesn't

> seem

>> connected in any way to her hands). She is beautiful, a joy, a

> huge

>> blessing and a huge amount of work. She is now stable and really

> healthy.

>> i lost my 11 month old baby son lewis in dec 04,he was diagnosed

> with mito,but not firmly as the tests all came back negitive.lewis

> was born at 35 weeks weighing 4lbs 12ozs,he was in special care for

> 2 weeks as he wouldnt feed,he was tube fed for 10 days and finally

> started on a bottle.we took him home when he was 2 weeks old and

> everything seemed fine until he was 5 months old.at 3 months lewis

> wasnt smiling or developing like our older son had.at 5 months he

> was still only 10lbs and the tests begun.a nasel gastric tube was

> passed and i fed him 6 times a day.lewis was given medication to

> help his stiffness and he became a new baby,the crying stopped andhe

> was so alert,but physically didnt develope.he had blood

> tests,lumberpunch and they came back negitive for mito,he also had a

> skin biopsy which we never received results for.lewis died

> peacefully in his sleep.

> the drs have labeled lewis with mito,but they are not certain,we are

> trying for another baby and they say the chances of it happening

> again are very low.our 4 year old is fine.

> we dont know much about mito but would be interested in hearing from

> anyone in similar situation as us.

>> Our second child Cecilia just turned five. She appears to be

> perfectly

>> fine. We had contemplated adoption, but felt the odds of getting

> a

>> child with special needs were fairly high that way too and that at

> least

>> with mito we knew what we were dealing with (more or less!) I was

>> terrified through my entire pregnancy, and so relieved that it was

> very

>> different. I suffered from low-grade depression through parts of

> it.

>> Cecilia was fine during and after birth and we were thrilled and

> amazed

>> at how healing it was to have a healthy child. And hard--because

> it

>> really forced us to realize how much we " lost " with Laney. When

> Cecilia

>> was 6 months old there was one blood test that showed a minor

>> abnormality (turned out to be fine) but it put me in a tailspin,

>> depression--antidepressants and therapy helped me recover!

>>

>> I am so glad I had Cecilia. I am getting to experience parts of

>> motherhood that I never had with Laney (someone calling me mom and

>> making me artwork for example). She is the light that keeps both

> my

>> husband and myself going many of the days that are hard with

> Laney. It

>> does bring more issues...Cecilia has her own mixed feelings about

> her

>> handicapped sister...I didn't really think about dealing with

> that...

>>

>> Having said all that we are undecided about a third. We would

> really

>> like another, but I honestly don't know if I could take it again

> if the

>> baby was affected. I now know what it is like to change 10

> diapers a

>> day for nine years, carry a big girl around and always need to

> plan for

>> wheelchair issues when going anywhere. I also know what it is

> like to

>> have a child who actually experiences some growing up and it would

> be

>> extra hard to go through that loss again. Plus, our friends and

> family

>> do not support us having another, and the lack of support would be

> hard

>> to live with. Actually, I know I could deal with it, that we

> would make

>> the best of it, still have a loving and happy family, but I don't

> know

>> if I want things to be that hard when they don't have to be. In

> quiet

>> moments, however, I hear a baby calling...

>>

>> No one can make the decision for you. And in some ways it would

> be

>> soooo much easier if we didn't understand the genetics, if

> the " choice "

>> was removed...

>>

>> I know this probably doesn't help, but it does touch a special

> spot in

>> my heart and I wanted to share...

>>

>> Adelaine's bus just pulled up, so off I go!

>>

>> Kailing

>> Mama to Adelaine and Cecilia

>> Saline, MI

>> @c...

>>

>>

>>

>> Lori Cutillo wrote:

>>

>> > Hi all, I'm wondering whether anyone would be willing to comment

> on

>> > their experiences with conception and childbirth after having a

> mito

>> > child. Were you scared? Did you have another child with mito?

> What

>> > were you told about in utero diagnosis?

>> >

>> > I turn 38 in May and my children are now 8 and 5 1/2. Oldest is

>> > pretty okay--minor behavior probs., no mito, highly

> intelligent. The

>> > youngest, with mito, is nonverbal and nonmobile, but has no

> medical

>> > complications. We are making final decisions about our family--

> I

>> > would like to get permanent form of birth control if we decide

> not to

>> > have more children.

>> >

>> > Thanks in advance, Lori, Christian and (complex I and

> IV)

>> >

>> >

>> > Please contact mito-owner with any problems or

> questions.

>> >

>> >

>> > *