Re: tubal ligation reversal

[Guest guest]

My husband has CMT1A and never had a problem thinking about having children.

We were told 50-50 chance of passing the gene no matter what the sex. We

have 2 daughters and the oldest does not have CMT but the younger one does.

All through is family it is just random when or if you will pass the gene.

Most have 3 children. 1 cousin the 1st child has it and another cousin her

3rd has it.

[Guest guest]

In a message dated 9/14/00 5:35:41 PM, sdgiftos@... writes:

<< I was diagnosed at age 4 and was told in my teens that if I had a daughter

she'd have a 100% chance of having CMT, while a son would only have a 50%

chance. >>

In most types the chance is 50% for either gender (50% chance with each

child).

Some CMTers aren't bothered by the pregnancy; others may have rapid

progression because of the stress on the body.

I don't know anything about tubal ligation reversal. Sorry.

Kat

[Guest guest]

,

Lamar here

Do you know the type CMT you have. I am assuming from what you said it is the

CMTX (sex linked) If so your daughters would be carriers. Some could be

symptomatic to different degrees, and some not. Your son's would each have a

50% chance of having CMT. If it is not X linked, each child stands a 50% chance

of having it.

Having children is a personal decision. It is said that every individual

carries some hereditary traits that are " negative " . Heart disease, arthritis,

diabetes, etc. are only examples. There are things worse than CMT. There is

never a 100% guarantee than any child from any couple will not have a severe

problem of some kind. There are many pros and cons for both arguments and there

is no " right " . answer for all individuals. I can say that it did not defer me

nor anyone in my family from electing to have children. I have CMT and my

mother did. I am glad I am here.

Medicare nor BCBS (nor any insurance I am familiar with) will pay for a

sterilization reversal.

Any decision should be mutually made with your partner. MDA will provide

genetic counseling as to the degree of risk. Good luck, whatever you decide.

----- Original Message -----

From: sdgiftos@...

egroups

Sent: Thursday, September 14, 2000 08:32 PM

Subject: [] tubal ligation reversal

My Groups | Main Page | Start a new group!

I would like to know if anyone with CMT has had their tubes tied to

prevent having a child with CMT. I was diagnosed at age 4 and was

told

in my teens that if I had a daughter she'd have a 100% chance of

having

CMT, while a son would only have a 50% chance. I am not sure why

this

is, and if anyone knows, please tell me. I thought those odds were

too

high and at age 21 I opted to have my tubes tied. Now, at age 30 I

am

considering having a reversal done so that I can have children in a

couple of years. I don't know if this will be covered by insurance

or

not, but I currently have Medicare and will starting Blue Cross/Blue

Shield in a couple of weeks. Any insight would be appreciated. I

would also like to hear from people who debated having children due

to

possibly passing on CMT genes and what your decision has been and the

outcome of that choice.

[Guest guest]

Hi

My name is Lee-anne and I am from Australia. I am 36 and have four

children..I was'nt dx with Cmt till I was pregnant with my third child who

is 10 now. Even though I was'nt that far into the pregnancy I still wanted

to keep the baby even though I was told I had a 50% chance of passing it

on. I then fell pregnant unexpectantly two years ago when my last child a

boy was 9. To me I did'nt even have second thoughts about going ahead with

the pregnancy even though my last child, a son Matt, had been DX with CMT.

My two older girls had been tested and they don't have CMT. But of course

that was my opinion only and people have there own thoughts and opinions on

weather they should have children or not. I have four children 16 year old

girl, 14 year old girl, 10 year old boy and a 2 year old girl only the boy

has CMT. After I had the baby I had my tubes tied and was told that it is

about a 95% chance if I had them reversed that I would fall pregnant. My Mum

who has recently been DX with slight CMT had her tubes tied when she was in

her late 20's, she had a reverse done in her thirties and it was successful

taking her only two months to fall pregnant. On the subject of weather a

person should have a child even though they no the risk of passing the gene

on, I think this is entirely an individual decision, even though it is a

hard one believe me, but I don't think any one should be judged on there

decision weather it be to have children and take the risk, or not to ever

have children. My last pregnancy was very difficult as I was older and my

CMT had progressed and I had a lot of people say to me why are you putting

yourself through all this and talked about me behind my back, but It was MY

decision and my husbands and this I think should be respected. Goodluck in

what ever decision's you make . Just remember that only you!! can make

your own mind up on the matter and that people should respect your decision

not matter what it might be. I am not saying I never have any guilt over

passing it on to my son , espeacially when I see him in pain or when he has

to quite a certain sport that he loves, He is very sports minded, but I

would never regret having him either. He has CMT a disabilitie but he has

just been picked to Represent our home town, Newcastle in Cricket for his

age. So that makes it all worth while. And we are very proud of him. Take

care.....hope everything works out for you. My email is lathams@...

if you ever want to write and would like to ask any questions.

lee-anne

----- Original Message -----

From: <sdgiftos@...>

<egroups>

Sent: Friday, September 15, 2000 10:32 AM

Subject: [] tubal ligation reversal

>

> I would like to know if anyone with CMT has had their tubes tied to

> prevent having a child with CMT. I was diagnosed at age 4 and was

> told

> in my teens that if I had a daughter she'd have a 100% chance of

> having

> CMT, while a son would only have a 50% chance. I am not sure why

> this

> is, and if anyone knows, please tell me. I thought those odds were

> too

> high and at age 21 I opted to have my tubes tied. Now, at age 30 I

> am

> considering having a reversal done so that I can have children in a

> couple of years. I don't know if this will be covered by insurance

> or

> not, but I currently have Medicare and will starting Blue Cross/Blue

> Shield in a couple of weeks. Any insight would be appreciated. I

> would also like to hear from people who debated having children due

> to

> possibly passing on CMT genes and what your decision has been and the

> outcome of that choice.

>

>

>

>

>

[Guest guest]

Hi , I had my tubes tied after I gave birth to my second child.... I have

had CMT since age 5 and new whenever my hubby and I decided to have children

that there was a 50/50 chance of my kids having CMT. My parents had 4 kids and 2

of us have CMT. I wanted children horribly. I loved and still love kids. I

wanted at least four..... I'm very thankful we stopped with 2, because my CMT

would not have allowed me to care for any additional. My CMT did progress with

each pregnancy, but not everyone's does... I also had problems during the

pregnancy's with my spine with nerve pain that would cause me to lose my legs.

Since this happened with both pregnancy's it caused concern. Because we were

afraid of possible paralization in my lower body we choose to have a tubal and

adopt any other children.... We did adopt a son 1 year later.

I do have a 17 year old daughter that does not have CMT that still tells me I

should not of had any children biologically due to the CMT of passing it on....

You have a tough decision in front of you. Only you can decide what is right for

you.

Jeanie

jeanie421@..., Moonglow21@..., jeanie421@...

http://community.myway.com/pd/CharcotMarieTooth

----- Original Message -----

From: sdgiftos@...

egroups

Sent: Thursday, September 14, 2000 5:32 PM

Subject: [] tubal ligation reversal

My Groups | Main Page | Start a new group!

I would like to know if anyone with CMT has had their tubes tied to

prevent having a child with CMT. I was diagnosed at age 4 and was

told

in my teens that if I had a daughter she'd have a 100% chance of

having

CMT, while a son would only have a 50% chance. I am not sure why

this

is, and if anyone knows, please tell me. I thought those odds were

too

high and at age 21 I opted to have my tubes tied. Now, at age 30 I

am

considering having a reversal done so that I can have children in a

couple of years. I don't know if this will be covered by insurance

or

not, but I currently have Medicare and will starting Blue Cross/Blue

Shield in a couple of weeks. Any insight would be appreciated. I

would also like to hear from people who debated having children due

to

possibly passing on CMT genes and what your decision has been and the

outcome of that choice.

[Guest guest]

Dear ,

you said that you were told- in my teens that if I had a daughter she'd

have a 100% chance of having CMT, while a son would only have a 50%

chance.

I'm sure everyone in this group would agree that they never heard of

those 'odds'. If your type of CMT is autosomal dominant, it means

that there is a 50% chance, WITH EACH PREGNANCY, of passing it on to the

child.

I feel I must mention that this does NOT mean every other child will have

it--there is sometimes confusion on that score. It's the 'luck of the

draw' EVERY time you're pregnant, whether that child will inherit.

I did not know what I had when I had my children. Out of the four

living, three have inherited, and one without. The three have it at

different levels--one mild, one middlin',and one severe.

You said you'd like to hear from couples who knew what they had, and the

choices they made. My oldest son knew when he married. They went for

genetic counseling, and after much questioning, the geneticist told them

that most couples who have a disease that could be inherited,choose to

have their own biological children, if the disease is not

life-threatening.

They now have two sons--one with, one without.

Best of luck, my prayers are with you, whatever your decision.

Theresa

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