Have any couples cursed with CF but hoping to have a family considered using pre-implantation genetic diagnosis prior to an IVF cycle? You can select unaffected embryos for implantation. If so, any idea how much it costs?
Do you have CF or do you have a child with it? I have a daughter with CF and never considered our family "cursed". I do wish I could take away her CF but it is also part of who she is and who are family has become, and I would not change that. I guess I didn't answer your question but I do hope there are other families that feel blessed to have these children.
Our first thought when our son was born last year was to NOT have any more children. But with time and getting used to the CF diagnosis, we realize it isn't fair to him to be an only child. Plus we don't ever want him to think we blame him for not having any other children. So we've begun investigating IVF with the genetic screening and quite frankly we can't afford to cough up that kind of cash -- we've heard at least $20,000 bucks a chance with no guarantees it'll work -- that we'd end up pregnant.
Some may think that we're being irresponsible, but we're planning to have a child "the old fashioned way". I'd like to believe there was a reason we were given a child with CF. He's such a joy and we feel very very blessed to have him.
My husband and I did PGD with an IVF cycle, and we now have beautiful & healthy twins. I believe it the procedure cost about $2,500, with an additional $1,000 for extensive lab work in preparation for the procedures. The procedure was done at Cornell in NYC.
Just to clarify... the PGD costs were in addition to the standard IVF costs, which can range from $8k - $30k, depending on all the procedures necessary.
Like I said, will have to weigh the options. We're not sure how much insurance will cover the vest when our son is able to have one, so may need to raid the savings account for that instead. If we were infertile, our health insurance has a ONE time allowable charge for fertility treatments, except the amount is only $500 that they'll cover.
My husband and I are carriers of CF and have an 18 month old with it-- we are in the beginning stages of PGD with IVF. It does cost around $20k per month- for both procedures.
Glad to hear a success story about PGD!
My last post on this was back in February when DH & I were just starting PGD with IVF ( We have a BEAUTIFUL son ,21 months old with CF). What an amazing, draining, journey it has been. Its a bit soon for me to announce, but I am 1 month pregnant!!!
My doctor implanted 1 embryo that was completely unaffected and 1 that was a carrier-- (I won't know about twins for a while)
We're amazed that they are able to not only detect affected embryo's, but carriers also. I'll be getting my embryo report Monday and I will share the results, as I remember we had quite a few affected with CF and only 1 unaffected.
I STRONGLY suggest that carrier couples look into this life saving process. Without even having an infertility/IVF benefit through our insurance company-- I was able (with a REALLY informative,convincing letter) to get both procedures covered by our health insurance, almost 100%. Clearly the alternative would have been far more costly for them.
Hope this post will get a few of you to really look into PGD (just type PGD into any search engine along with the name of your state)
Ditto here about having another child. Know there's a 25% chance that our child will be born with CF, but most of the people we know who've had children with CF have had more than one child with it. But PGD and in-vitro is very very cost prohibitive for us. Trying to weigh our options. Could you give us the "gist" of the letter you sent to your insurance provider. I've got a doctor's appointment in a few weeks and want to discuss all this with him and see if PGD is even an option in my area.
I got my embryo repory today, out of 18 embryos:
8 were affected w/ CF
7 were carriers
1 was completely unaffected/ non carrier
2 the tests were inconclusive
The 25% rule definately did not apply here, thank God for modern medicine.
As far as my letter, it was complete and left no stone unturned. I started off explaining CF and the chances of 2 carriers concieving having a child w/ CF. I sent pictures of my son when he was 7 mo. and hospitalized w/ pnuemonia when he got diagnosed. I sent copies of the hospital bills and perscription benefits.
I briefly touched on the ongoing and inevitable needs of a person w/ CF (enzymes, Ursodiol, TOBI, breathing vest, lung transplant) and the financial stress it puts on both the insurance companies and the family-- And worst of all, the sickness and poor quality of life a person w/ CF could face.
I then explained PGD (Which has been around since the late 70's) by cutting and pasting from my center's website the overview of PGD and noted that there are no procedure codes for PGD w/ IVF so this would need to be looked at on an indiviual basis. PGD drops the chances of CF from 25% to approx 1-3%.
I was amazed that the first return reply I got from my insurance company was an approval, no fight, no struggle. When explained in this matter, it only made sense to go ahead with PGD. Everyone has the right to expand their families, why not minimize all possible risks for CF carriers?
My fingers are crossed for all of you- I will answer any other questions you may have.
The Following User Says Thank You to sherry092 For This Useful Post: kluckey21 (05-17-2012)
Did you do PGD for the sole purpose of gender selection- or were you also trying to avoid CF???
If it was only for gender selection, I'm curious why you would choose the CF board to post. Most of us here have an affected child and gender is the absolute least of our worries. To go through the entire procedure (as I have already done) just to choose the sex- TO ME - seems absurd. And to top it off, you paid $25k and didn't get what you wanted.
I do not mean to sound harsh, but this really isn't the appropriate board for your post. Its nice if you wanted to give advice about PGD but I think the reason behind it may turn some people away.
Last edited by sherry0902; 10-03-2004 at 03:21 PM.
Recently asked my ob/gyn about this possibility. Wasn't even an option in my area. We live in the midwest, and most of this is being done 2000 miles away on the east cost. Bummer!
So at this point we're thinking DS is just going to be an only child. Even if it was available, don't think we could afford the $25,000 for the procedure. Would rather try and save money to make DS as comfortable as possible and make sure he has the best medical care available to him.
try not to focus too much on lung transplants and such, i know its hard, i know how you feel, i have chosen to not have more children, although for somewhat different reasons. i dont want to have to "share" (i know bad choice of words) my time with another child. i dont want to feel quilty about, maybe, not spending as much time with another child, sound selfish, i know. anyway there are things to help you as the parent financially, you may already know about them .... but... there is a cf pharmacy, which is kinda like a mail order and most insurances give discounts for that. ex. prescriptions cost $10 generic....$20 name brand and $30 mail order for a 3 month supply, the cf pharm. will usually match you specific insurance carriers policy. like i said you may already know, but just in case you dont.... i hope you "baby" is doing great!! oh, sorry to hear that you cant do the implantation thing, not sure i would do it, but i respect that you tried, anyway.
If I was a little younger, I might consider seriously searching for a PGD site closer to me or trying to convince the local infertility clinic to jump on the bandwagon -- but I waited until I was 36 before TTC. At this point I'd be 39 or 40 before having another child.
As for costs of drugs -- our insurance is pretty good. The $15/copay adds up though. But what would we spend our money on anyway? We just want to be able to spoil ds rotten - make sure he has whatever he needs healthwise, not to mention toys and being able to go on some vacations with us.
i understand, but every penny helps, plus the cf pharm will deliver to you every month, i wouldnt use them for the iv meds, but for the everyday ones its great. i save LOTS of money, i spend a bout $70 per month om T's meds instead og $200 at my local pharm. just one less to worry about when the meds come to you, ya know.?
Thank goodness I finally found you guys! My husband and I are both carriers. We have no family history and did not discover this until after our dd was born 19 mos ago with CF. WE met with our doc to consult about IVF/PGD/ICSI and are so overwhelmed right now. Anyone out there have a prepared pep talk ready?