Another baby

L

liveinhope

Guest
Hi Everyone.
looking for information on having another baby.
we need to go through IVF and PGD as we both carry d508 and have a son who is dd508 who is now 4.
anyway, anyone gone through this process. we have no idea where to go for information, so hoping to hear from someone on here who can help.
thanks.
 

triples15

Super Moderator
Hi Hope,

Sorry, I don't have any experience in this area. I know of one member though who used IVF/PGD for her second child. Her name is Megan and I think she's more than happy to share her experience. She hasn't posted anything in a while it doesn't look like, so hopefully she is still around and can help.

Here is a link to a thread where she posted a little bit about it:

http://forum.cysticfibrosis.com/threads/28484-IVF-PGD-results?p=894592#post894592

Good luck to you, and take care,

Autumn 32 w/CF
 

Ratatosk

Administrator
Staff member
It's been awhile, but there was someone who posted on a healthboards site, as well as this one who discussed the process. Basically, they had to get prior approval for PGD, which included providing documentation indicating that the costs of PGD far outweighed the costs of raising an additional child with CF.

I had a friend who went the adoption route as they had issues personal/moral issues with PGD.
 

JENNYC

New member
I don't have any information..I just wanted to say good luck!! And many prayers for you!!! Nothing like having a sibling, my kids support and love each other so much! We were lucky that we had Clayton (non cf) before Abby came along...so we didn't have the hard decisions to make as God had already made them for us.....so lots of prayers going up to you and your wonderful family!!
 
M

Murphysmama

Guest
Hi Hope!

We are also in the process of evaluating IVF/PGD in hopes for another angel. I sent you a PM. Let's talk and hope someone who knows the ropes can help us along! :)
 
L

liveinhope

Guest
Thanks for the pm murphysmama
Have replied to it. Hope i did it right and you get it ok. New to the pm scene. Hope to keep in touch
 
L

liveinhope

Guest
Thousands of members on rhis forum, and nobody has gone through this process! Very dissapointed.
 

Printer

Active member
I won't attempt to speak for anyone else but I am shocked that anyone could be so selfish and cruel to intentionally bring a child into this world knowing that there is a 50% chance that child will have CF.

Bill
 

JENNYC

New member
Bill I'm not for sure on this but pretty sure IVF is to ensure that they get a healthy baby with no CF.
 

triples15

Super Moderator
Hope,

Sorry no one that has gone through this has responded. The few who have gone through it have probably missed your post. The user I told you about who used IVF/PGD and was happy to share her experience user name is mneville. I would suggest PMing her on here. Sometimes people miss posts but will respond to PMs.

Bill,

I wondered what your "wow" comment was about. Glad you clarified, now I understand. Just like Jenny said, they are doing the IVF/PGD to ensure their next child does NOT have CF. So if what upsets you is the fact that they are bringing another child into the world with a 50/50 chance of having CF, you should be applauding them for the lengths they are going to make sure they don't. They could do it "the old fashioned" way if they chose to take that risk, but instead they are willing to spend thousands of dollars, tons of dr's visits, stress, and poking and prodding to make sure the ultimate outcome is a child without CF. In my opinion this makes her the opposite of "selfish and cruel". This is the reason I am really hoping she finds the info she needs. Here is a link to the wikipedia page about PGD (preimplantation genetic testing) which is what she is persuing:

http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis

Now, many people are against PGD for a multitude of personal, moral, religious reasons etc. So there is potential this may still upset you. However, if what has you upset is them risking giving another child CF, then there is no reason to be upset at this mother.

Take care and good luck again Hope,

Autumn 32 w/CF
 

JENNYC

New member
It is totally possible just like triples15 said....it is just very expensive and takes a lot to do. But it is a wonderful option. :)
 

MOM247

New member
Bill,

I think you need to educate yourself on what PGD stands for. These parents are making some very tough decisions, and don't need to be attacked. PGD stands for Preimplation Genetic Diagnoses, it's the most advanced treatment for preventing genetic diseases. It's an option for parents. I respect every families choice on what's right for their family.

Sarah
mommy to Johnny 5 w/cf & Bailey 3 no cf
 

Printer

Active member
Bill,

I think you need to educate yourself on what PGD stands for. These parents are making some very tough decisions, and don't need to be attacked. PGD stands for Preimplation Genetic Diagnoses, it's the most advanced treatment for preventing genetic diseases. It's an option for parents. I respect every families choice on what's right for their family.




Sarah
mommy to Johnny 5 w/cf & Bailey 3 no cf

Sarah:

I don't "need to educate" myself on the subject of PGD any more than you need to educate yourself on the Constitutional rights of free speech. The information that these very nice women have furnished is sufficient for the time being.

Additionally, there is no correlation between my expressing my opinion, right or wrong, and attacking anyone. You can be certain that my command of the English language is sufficient enough that if I wish to attack anyone, there will be no doubt.

I do, however, consider your remarks, as directed upon me, not only uncalled for but a personal attack.

Bill
 
K

Kaethe108

Guest
We informed ourselves about the possibilty of pole body diagnistic not long ago. So if anybody is interested in infos about this, I may help.
By the way: In Germany there is no way to get it paid. It costs 11000 Euros for the first try and 8000 Euros for every next try. Each time you have a ca. 22% chance. The procedure takes about 6 months before you can start, because they have to "build" a genetic testing system, especially for the family. You also have a ca. 25% chance of having twins.

All these factors made us choose another way, because right now we try to get pregnant, but we made sure the baby will not have CF.
 
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