Male fertility (was Re: Ashuana)

[Guest guest]

The male sterility aspect of CF saddened me as well. Here is how I have

handled it.

When my son (CF) was little we had lots of conversations about

" families " where I gradually talked to him about the many different ways

people have families ... foster children, adoption, naturally, in vitro,

artificial insemination, etc.. At a very early age, I mentioned that men

with CF usually didn't have biologically-related children but that many

still had families. I used a family I knew as a role model to talk about

the Dad with CF. I found it much easier to talk to my son about the

issues when he was little and less concerned about them and to gradually

reinforce and build on the information whenever I found opportunities to

fit it into the conversation. I didn't want him to ever 'suddenly find

out' that he couldn't have biological children ... I thought it would

be easier if it was something that he 'just always knew'.

Well, guess what?! Several years later, I had to REVISE the information

and tell him that now it was POSSIBLE for some men with CF to father

their biological children! There are techniques where sperm can be

aspirated from men with CF and used for fertilization through in vitro

methods. I discussed this further with my young teenager after a

biological father of twins spoke at a CF meeting about the technique and

what he and his wife went through to have their children.

That Dad passed on a valuable lesson. As a teenager, he had been tested

and found to have a small amount of active sperm in the semen. He had

been led to assume that when he was ready, it would be possible to use

artificial insemination with several samples of his own semen combined

to make up enough sperm. But, when the time actually came, the vas

deferens (duct work that carries the sperm to the semen) had

deteriorated so there was no longer any sperm easily available. In

hindsight, it would have been wise to have frozen sperm when he was

still able to produce some. Instead, doctors were able to aspirate some

sperm and use it in vitro but it was much more invasive and meant his

wife had to undergo hormone treatments and have eggs extracted for the

fertilization. Most men will not have any residual function of vas

deferens even as teens, but with so many mutations, and combinations of

mutations and different progressions of symptoms, it is worth

considering. Now that my son is an older teen, I have started talking to

him about this scenario and suggesting that as soon as he feels brave

enough to be able to produce a semen sample for clinic, it would be wise

to have it tested. In the remote case that there was sperm available,

there could be an option to freeze samples to make things easier if he

ever decided to have children. Of course, this is NOT what a 16 - 17

year old wants to hear but I don't want him to ever say, " Why didn't you

tell me?! "

M

Ashauna_and_@... wrote:

>... I breaks my heart thinking that my son as well as 98% of males diagnosed

>with cf will not be able to have children on their own. My family makes

>me so happy. Every wish I have leads to a long and healthy life to all

>of those with it.

>

>Ashauna

>

>

[Guest guest]

What an informative message. I really thank you for the advice and

encouraging words. I definately will find a way to put it into

perspective when my son is of age. Old enough to even care about

anything but the next time he has a bottle. ( considering he wants

to eat ) not much of an eater I am affraid.

Anyways I really hope that when that time comes for you son

that he is able to have active sperm. This really has been a struggle

for me and my husband especially. It is hard for him knowing that this

could be the end of his blood line. Crazy things you never want to have

to think about, but there are a lot of those with this disease.

Good luck to you and your son. I wish you and your family the best.

Ashauna mother of 2 ( 5 yr old w/o and 7 month old w/cf.