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June 2005

I have CF and my wife's a carrier, so naturally we were excited to learn of IVF and the prospect of having our own
healthy biological child. We decided after many doctor appointments and long talks that we weren't satisfied with what
the IVF center had to offer. This is an explanation of how we came to that conclusion, in hopes that other couples may
learn from our experience and get a better idea of what to expect if they're pursuing IVF.

We did our homework, met with the IVF center, and we were under the impression that there were four major steps to
possibly have a pregnancy.
1. I meet with a urologist to retrieve my sperm.
2. My wife takes drugs then has eggs retrieved.
3. They fertilize the eggs with my sperm.
4. They implant a few embryos in my wife.

Our first disappointment came in the success rates they shared with us (something like 20-30%), and even lower with
PGD (pre-implantation genetic diagnosis). They offered no portion of the money back if unsuccessful. We learned of
other centers offering a refund of certain fees if you signed up for three "tries." Other centers also offered a "package"
rate for multiple tries -- ours didn't. Considering the costs were in the TENS of thousands of dollars, we were
disappointed with their success rates as well as them not standing behind any portion of their service. We figured oh
well, they're a business. And how do we put a price on a child? We'd pay anything if it works!

We then learned we needed to meet with a geneticist before starting the process. He explained what we already knew of our chances of having a CF child
given my wife is a carrier and how PGD MAY ensure a non-CF baby. This appointment was required and gave us no insight or new information.The
Urologist visit turned out to be multiple appointments, which were bad experiences for several reasons. He insisted the questions we asked were not
important (for example, would he be doing a MESA or TESE procedure?) He required I do multiple tests on different days that either had already been
performed or were debatable whether they were required. He insisted my wife do another CF carrier test even though we had the results in hand.

If they stood behind their procedures, or were to be paid by our insurance I could see why they needed to "cover their bases" with all of these tests -- but
they didn't. All of the above tests he required be done at his clinic even though he knew he was "out of network" for us, and we were paying with limited
personal resources. These trips involved four different visits, which were time consuming given we were out of state. We got the feeling we were being
“worked” for maximum revenue and that whatever we had already proven and gone through was useless.

Needless to say we were frustrated with our experience thus far. We figured not all doctors and clinics have the same protocols, so let's just suck it up and
move forward with the process.

Our next disappointment came in speaking with the lab that does the PGD or polar body biopsy. They informed us there is a 5-10% chance of error, that
even with PDG the implanted embryo may have CF. They assured us they could most likely catch CF with a CVS or amniocentesis and we could terminate
the pregnancy at that point. Later we learned those procedures are done relatively late in the pregnancy. We didn't want to put ourselves in a position of
having to make that choice.

We never got past step one in the four steps named above. We had already spent a lot of time and money and hadn't even BEGUN the
actual process. The error mentioned above was small by some measures, but given the outcome (CF), it was higher than we were
comfortable with. That, combined with the fact that we weren't impressed with any of the three doctors we met, led us to the conclusion that if
it was "meant to be" it would have felt like it -- for at least ONE of the appointments! Could we go somewhere else? Sure, but this was the
biggest and best-known IVF clinic in the major US metropolitan area near us. We figured it must not be meant for us at this time . . .

It was months later that we looked into IUI (Intra Uterine Insemination). We decided we were comfortable using donor sperm since they did
CF screens on them. Even though there is a chance the donor could be an "unidentified carrier" we are comfortable with the risk.
EVERYTHING in life has risk and this is no exception. So we met the doctor, she answered our questions, explained what tests would be
done upfront (no pun intended), and explained the fees. My wife tracked her ovulation, did the procedure (15 minutes) and now she's 12
weeks pregnant! It cost about $500. We are already enjoying nurturing our little baby. We are tracking his/her growth by the week and are
starting to make a place in our home for this wonderful blessing.

Our frustrations have more to do with the doctors, and lack of communication of what was involved, than with IVF. We interpreted the barriers
we met with IVF as signs that this may not be the best option for us at this time. We still remain open to the idea of IVF in the future. Maybe at
a different center, or if PGD error rates decrease.