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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.