What would you do?

 Many of you know my long, boring story, and I clearly don't know what my next step will be partially because of an unresolved issue with my RE.  Let me be clear, I am not bashing. I have been a strong advertisement for my doc, but my last cycle has left me pretty disappointed.  If you have the time to read this, I wrote this letter and sent it to the 2 docs at my clinic, including the owner, on October 26 and have received no response at all to date.  He's on FB and I'm so tempted to just send it to him there for everyone to see, but the little angel on my shoulder tells me not to. What would you do next?

Good Morning Dr. Kiltz.

I am writing in reference to my third failed IVF cycle at CNY Fertility in Latham  last month. I wanted to take some time to think about the course of events before writing to you, but I think it is important for you to know what happened and how my husband and I feel.  Obviously, if there had been a successful outcome, I wouldn't be writing at this time, but as it turns out, it seems as though we never had a chance.

I came to CNY Fertility in Latham in November of 2007 for a consultation regarding IVF/PGD for gender selection.  I had previously had 4 live births from 3 pregnancies, and two early miscarriages with no known reason.  My husband and I were otherwise a normal fertile couple with a strong desire for a daughter. We met with Dr. Grossman and discussed the process and possible outcomes, and then met with somebody else regarding the fees.  Because this is not a process to enter into lightly, we took quite a bit of time to think about our decision and save some money for the journey that was ahead of us.  It wasn't until the Ferring Trial became available the following spring, thereby reducing our total costs,  that we made the decision that it was time to pursue our dream.

At the time of the initial consultation, I was already 39 years old, and Dr. Grossman quoted us, in writing,  a 20-30% chance of success with one IVF/PGD cycle. I know that he says he doesn't always remember exactly what he says, but in addition to having it in writing, we do remember every single thing he said. Believe me, when people meet with you regarding such an emotional journey, we hang on to every word you say. In fact, we also remember him saying that those statistics were actually based on couples with infertility problems, and although there are no IVF statistics for people without some type of infertility, we could only assume that because we were not infertile,  that our chances were greater than the 20-30% quoted. Because we already had 4 children, including a set of natural identical twins, we also talked about only doing a SET.  I specifically asked Dr. Grossman how he felt about doing a SET, and he responded that "he wished more people did them."

My first cycle seemed to go very well. We retrieved 18 eggs. Of those, 15 were mature, and 11 fertilized. We were very happy with those results given my advanced maternal age and thought for sure there would be normal females available for transfer. Unfortunately, the gender of our embryos was not in the usual 50/50 split, and of those 11 embryos that went to PGD, there was only one female, and even she was "abnormal." Because Latham was not doing PGD at that time, you personally did our retrieval and transfer in Syracuse, and after discussing the results, we went with your advice to transfer our only female embryo in hopes that the PGD had given us a false positive and she was actually normal. You called it a "leap of faith."  I do not regret that decision at all, and would make the same one if I found myself in the same situation today, but unfortunately a positive pregnancy test led to a miscarriage at about 7 weeks.  I had a D&C in July and immediately began to think about my  next step.

Having almost $10,000 in credit card bills from my first cycle, we waited until it was paid off to embark on a second cycle in May of 2009.  Based on my history, we were able to start this cycle at a much higher dose of stims than the first cycle, and it was shaping up to be a fantastic cycle. We had at least 15 follicles going into this retrieval and were excited about the possible number of eggs this would give us.  I only had about 10-12 follicles going into my first retrieval and wound up with 18 eggs, so things were looking good. What we didn't realize at the time, is that during the period between my first and second cycles, CNY's protocol had changed from HCG to Ovidrel which reduces the dosage significantly. Although my weight was below the 190 pounds that would have indicated the need for a second Ovidrel injection, it seems that that was necessary because after waking up from anesthesia, I was very disappointed to hear that only one egg had been retrieved.  I was devastated and confused, but Dr. Grossman was very kind and apologetic and suggested that I had probably already ovulated. After the fact, my labs seem to indicate otherwise, and it was Justine who realized recently during my third cycle that it was probably the reduction in the Ovidrel dosage.  Dr. Grossman suggested that we freeze the one embryo, skip a month, and try another cycle in August at no additional expense to us other than medications and anesthesia.  We really had no other choice, so the waiting began.

I returned to CNY in August again to begin yet another IVF/PGD cycle with the same 600 daily units of Bravelle and Menopur, but this time my follicles were much less responsive. As I was nearing the end of the stims, we still only saw about 3 or 4 follicles on each side but Justine thought we would be pleasantly surprised at retrieval because of how difficult it was to see all of the follicles, and the assumption is that there were more hiding. Unfortunately, my third retrieval gave us no pleasant surprises. We got only 8 eggs, and I believe 6 of those fertilized. The frozen embryo from the second cycle survived the thaw but did not make it to PGD, so after 3 days, we were told that only 5 embryos went to PGD.  I felt like this cycle was already doomed.  All I could think about was out of 11 embryos in my first cycle, we didn't get a single healthy female; what were the chances that we would get any out of just 5, but I was reminded over and over, that it only takes 1.

Retrieval day came and we made the hour and a half trip to Latham not knowing whether we had anything to transfer or not. On a side note, I think this part of the process needs to be rethought. The process is dramatic enough without it needing to be so cloak and dagger. My transfer wasn't scheduled until 2 pm that day, and it seems like a phone call could have been  made to at least give the couple the opportunity to think about how to proceed or to not make the trip if there isn't anything to transfer at all. As it turned out in our case, there was one single healthy female embryo to transfer. She was only a morula, and I knew that wasn't great news, but it was all we had so went for it and hoped for the best.  I was less than encouraged but tried to be positive. While I laid on the table after the transfer, my husband and I cried.  So much emotion gets built up during this journey, and it is mixed emotions. We were happy to have a transfer, disappointed about the quality, but hopeful for the future. I immediately began to think about the baby girl inside me and allowed myself for just a few moments to believe that our dreams could come true.

As you know, our journey was documented for a British television program and so, while we waited in the procedure room, the film crew interviewed Dr. Grossman about the events as they unfolded and specifically, his feelings about the transfer.  They have him on tape saying at that time that I had a 5-10% chance of success.  Their jaws dropped when they heard this, as did mine when they revealed that statistic to me. I was so confused because up until that point, everyone had been nothing but positive.  After my negative BETA, I emailed Dr. Grossman about that fact and he said that it was correct; that 5-10% of women my age would have success with a SET.  He said the discrepancy in the statistics from what he originally quoted me at my consult was because of me now being one year older and doing a SET. He said that in order to achieve the 20-30% success that he quoted, I would have had to transfer 4-5 embryos. We NEVER, NEVER talked about transferring that many embryos. In fact, we ONLY talked about doing a SET which, if you remember, Dr. Grossman wished more people did. When we talked about the SET in the consult, we certainly should have talked about the how poor the results would be, but we didn't. In addition, I know that 39 isn't a great time to be starting IVF, but if turning 40 decreases the success rate that significantly, that is also a conversation that we should have had BEFORE I spent almost $20,000.  Don't get me wrong; Dr. Grossman and his staff were completely supportive and empathetic during every step of the process, but right now, I feel very deceived.  Had I been given a 5-10% chance of success at my consultation, I am relatively certain that the decision whether or not to spend the money on this dream would have been a different one, and I believe that you know that as well. I am not the professional; you and your staff are, and it is your responsibility to accurately  relay the facts as you know them. I completely understand that there are no guarantees with IVF, but it now seems that failure was much more likely than success.  If Dr. Grossman believed that I needed to transfer 4-5 embryos to achieve success, then we certainly should have talked about that before sending only 5 embryos to PGD.  The chances of getting 4-5 healthy female embryos out of only 5 embryos going to PGD were slim to none, and we should have discussed the option of freezing those 5 and adding to them with another cycle rather than wasting another $3600 on the impossible. 

I don't know where to go from here, but I obviously have to explore other options. It is unfortunate that those who have the money can just keep going until the dream is realized. That is not an option for our family.  We are a middle class family with a big dream, but a small pocket book and lots of other financial responsibilities, and I feel like withholding the facts from us was irresponsible on the part of CNY Fertility. I cannot even tell you how many people I have referred to your clinics, but I don't know whether or not I can continue to do so.  I realize that at the end of the day, it is a business, and you need to make money in order to stay in business, but as doctors, you also take a Hippocratic Oath and have a responsibility to be honest with your patients and first do no harm. While nobody lied to us, not giving us all of the facts was a sin of omission, and that will stay with us forever.
 

Thank you for your time.

Richard and Allyson Burns

 

I am sorry that you are going through this.  I know you are still spinning from the rollercoaster ride that you have been on.  I think the TV show changes things when he was interviewed and I think he said the lower number because she was a morula. Based on IVF stats I see quoted on websites, it seems 20-30% at 39-40 is high with a SET and he should not have done that to you. I think the doctors don't know what to do with us "fertile" women with stats and IVF.  There really aren't any good studies, etc to show how fertile women do with infertility treatment.  I think they want to be optomistic for us so sometimes they give higher numbers but 20-30% with a SET is high, I think.

I still don't understand how cycle #2 happened to you.  That doesn't sound like it is a common occurrence. 

On Sart's page, for CNY, the 2007(old) live birth rate was 13.7%. They did 234 cycles and in the 38-40 group averaged 3.2 embryos transferred to get to 13.7%.  There was 0 elective SET's in that age bracket.  Now, these are infertility patients mostly, I am sure but age is still a factor.  I think the whole issue other than BFN is that he did not do a great job setting expectations with you.  If you do decide to cycle again, I think it would be beneficial to talk with another RE.  I think it is always helpful to get another opinion.  I learned a lot when I did. 

Like I said before, I don't think they know how to quote us stats given our history.  I am sorry that you are having a hard time with this.  I think being on here and reading about everyone else is not helpful sometimes.  It is hard not to ask, why her and why not me.  I felt that way before. I hope you can find your way through this and your daughter finds you someday.  Take care.

I would try a few more times to get in touch with them. They certainly owe you an explanation. Perhaps a follow up letter and/or phone call- asking if they received your letter and seeing if they'd like to set up a time to talk to you about your concerns? Both your experiences and Stacey's recent experiences with CNY have made me strongly question whether I want to "risk" cycling with them this summer despite the major convenience (I live 20 minutes from their Latham office), or if I should fly across the country to cycle with HRC?! I wish you luck and hope you can find a way to continue your quest for a DD............ Jen

Your letter is written very well and factually and professionally sets forth your journey.  What I am wondering, after reading it, is what is it that you would like to see happen.  Do you want some money refunded?  (then perhaps you could try with another clinic).  Do you want them to give you another cycle free of cost?  Do you just want an explanation and apology?  Do you just want a suggestion of whether, and if so what, might work for you if there were another try?

Instead of waiting for them to respond, I think you should decide what it is you are wanting from them and communicate that to them (via another letter, email, etc.).  In that communication, tell them that you would like to schedule a time to meet in person to discuss the situation and your request.  

 Good luck.

 

Your letter is very well-laid out and respectful.

Here's what I would suggest next:

- If there is anyone there who has been especially friendly/kind to you, ask them if there is anything they can do from the inside to speed a response along.  Or just ask for their advice on how to best get in touch with <person(s) of your choice>.
- If the above doesn't help/apply, fax your original letter to the office with a cover letter stating whom you already mailed it to, and the original date.  Politely ask that <person(s) of your choice> get back to you by X date (and provide your contact coordinates/hours).
- If you hear nothing by X date, call the office (mention the letter and fax).  Reiterate that you'd like <person(s) of your choice> to get back to you by Y date.
- If still nothing by Y date, call the doctor(s) directly.  Refer to letter and fax.  Reiterate that you'd like <person(s) of your choice> to get back to you by Z date.  
- If still nothing by Z date, try the FB message asking for a followup (don't post your whole original letter though).
- If still nothing, you can start applying more pressure (not sure what form that would take - public??)

Throughout, you need to be clear about what you are asking for.  Are you asking just for just any sort of response?  Do you want to speak to someone specifically?  Do you want someone to offer you solutions/compensation?  Don't leave them guessing as to what you want - be clear so they can have a chance to meet your need.

HTH!  Let us know how it goes!!

GZ

 I just sent you a PM

So sorry you are going through this....

Your letter reminds me of what we went through with HRC/Microsort.  None of our letters got answered and we are still waiting on a refund that was promised to us over a year ago

I know how you feel about being "deceived by stats".... after HRC nurses told us we were "good to go - everything looks fantastic" along with 20% pg odds for clomid cycle with a SINGLE egg, and then Dr. Potter comes here and says its the same pg rate as a natural cycle with no stims (less than 10%)...makes us glad we didn't believe him and fork over another $12,000 when he gave us 70% pg odds with an MS/IVF/PGD cycle (Microsorts own IVF stats are less than 25% for MS/IVF/PGD!!!)

So many times Dr. give you the BEST CASE scenario when trying to secure your business...and then when you experience failure after failure, they fall back on their "well...nothing is guaranteed" speech...ugh!  I wish they would simply be honest and allow patients to make their own decisions.  We certainly would have cancelled our cycle had we known the odds were so poor...but they were only interested in getting our $6000.

Keep up with the letters...and GO PUBLIC!  Sometimes the only satisfaction you can get is warning other patients to steer clear of clinics where the practices and patient care is questionable.

I am so sorry that you have had to go through this.  I agree with the others...you need to state what it is you hope to gain from this letter.  I would call the office and ask for the RE to call you so that you can talk to him personally. 

 

Wow MT I had no idea. I definitely think you deserve an explanation. The first cycle is excusable but the second certainly isn't and the large difference in % is not either.

I agree with the other ladies on how to handle it. I would not let up until I had a response.

 

You go girl.  I think it's great that you have contacted them and are wanting answers, you deserve them.  I am sorry you have been through so much.

I am interested in seeing your documentary.  I am in the US however.  Do you know how this is possible?

Ilovemykids:

Your letter is written very well and factually and professionally sets forth your journey.  What I am wondering, after reading it, is what is it that you would like to see happen.  Do you want some money refunded?  (then perhaps you could try with another clinic).  Do you want them to give you another cycle free of cost?  Do you just want an explanation and apology?  Do you just want a suggestion of whether, and if so what, might work for you if there were another try?

Instead of waiting for them to respond, I think you should decide what it is you are wanting from them and communicate that to them (via another letter, email, etc.).  In that communication, tell them that you would like to schedule a time to meet in person to discuss the situation and your request.  

 Good luck.

 

Ditto.  SO sorry for all your heartache.  I hope you get some answers.

Oh MT....how awful for you to have to go thru all this. I truly understand how you feel...disappointed, decieved, conned,(this is exactly how we felt as well). It is such an emotional journey, as you said, and I believe you need to push for a response so you can at least decide what to do from here....be that a fresh cycle or at least get some closure. I do agree with the other ladies......you need to be clear about what you are asking for and communicate this with them VERY clearly with a time frame for resolution. Decide HOW you want them to respond and put this in your new correspondence with them. I would only give them a short time to respond and then I would be on the phone to them every other day.....THE SQUEAKY WHEEL GETS OILED. Don't let them forget you or your situation. Afterall....Drs or not, they are running the clinics for a profit and they are obviously using avoidance if they have not gotten back to you already. I wish you all the best of luck

I am so sorry to hear about all the bumps in the road you have traveled. I can understand your confusion and frustration. I hope you get some response from them so you can obtain closure and move on, however that may be.

Best wishes.

Firstly big hugs to you and for being so brave. Your letter is very well written and very balanced. I agree with OP's you need to express what is the outcome you want and then chase them down. In relation to stats with a SET or anything else I was told the other day and I am 41 years old that I would only have a 5 percent chance of getting pregnant and was recommended to go straight to donor eggs :( Although at the time I was upset at least he told the truth and that is our right as patients to be given the facts and let us decide what risks we are prepared to take. I too would feel that some further explanation is needed and warranted. I hope you get the outcome you desire. Mel xoxoox

 Oh MommyTwingle, Allyson, Im so sorry you had to go through this! I truly understand your feelings about this rough rough IVF journey, and I have to agree with you, they should have definetely told you about such a minimal numbers of possible success...I think it would have make a difference in your decisions! 

I think they should reply to your very polite and well written letter, that is the least they could do, to give you a proper answer.

Annika