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Sunday, January 18, 2009

Rays of sunshine (or what the doctors said-pt 1)

Again, I want to thank you all for you kind words that you have left over the last week. This has been really nerve-wracking and exhausting.

But, I have good news! It seems that the doctors may have been a bit overly-enthusiastic about the reduction. Once they found I that I didn't WANT one, than they said. Oh, well there is no real need to get one.

Yeah. I am not really sure what to think about that. I will try to lay out how all of this happened over next couple of days, however, I succumbed to more nausea and work has been all-consuming...so it may take a while.

I will start with what I was read over the phone on (this is paraphrasing, as I realize that I left the paperwork at my work).

Due to these extreme circumstances, it is with much sadness that I recommend
that Brenda have a fe.tal red.uction.


Then freaking out ensued.

Here is a copy (with names changed), that was the response to that phone call. The email was sent to our RE, the surgeon and the doctor who performed the embryo transfer.

"Good morning, This email is on behalf of Hubby and Brenda. We
recently went through a successful embryo transfer using donor eggs and have
two, healthy babies growing. We are terribly thankful for this.

There was a concern prior to the transfer as to how many embryos should be
transferred. Brenda has undergone two myomectomies for the removal of uterine
fibroids prior to the transfer. Dr. Surgeon had mentioned after the second
surgery that Brenda would likely need to give birth via c-section and that he
did not think that she should carry twins or more. Prior to the transfer, I
recalled this conversation and specifically called Our RE's nurse to
confirm if this was still Dr. Surgeon's recommendation and if there was any
record of this for Brenda. I was assured by Our RE's Nurse that all
relevant information regarding Brenda's health would be available to the
transferring doctor on the morning of the transfer and that this information
would considered in full before the procedure.

On the morning of the transfer (11/16/08), Dr. On the Day of Transfer
(OTDOT) indicated that they recommend transferring two embryos. I again
brought up the conversation that Dr. Surgeon had with me regarding carrying
more than one child to term. Dr. OTDOT replied that while the c-section
recommendation was in Brenda's file, there was no record that carrying twins or
more should be avoided. She also felt that if this was a major concern, the
information would be in Brenda's file. Dr. OTDOT did ultimately leave the choice
to us. Since the doctor recommended transferring two embryos and we had no
record to indicate otherwise, we agreed to transferring two embryos.

The procedure was a success and Brenda now has two healthy, growing
fetuses. On Dec. 23, we had a routine ultrasound and visit with Our RE. I again
mentioned the conversation that Dr. Surgeon had with us regarding carrying
more than one child to term. Our RE immediately called and emailed to confirm
Dr. Surgeon's recommendation. Dr. Surgeon was unavailable at the time. On
Monday, Jan. 5, [ed. note: Hubby got the day wrong] my wife received a
call from Our RE's nurse. She began reading a written recommendation from
Dr. Surgeon that carrying more than child to term would be very risky for
Brenda and should be avoided. In short, it is now recommended that Brenda go
through fetal reduction. I can not reiterate the actual recommendation as my
call to Our RE's nurse on Monday requesting this information has not yet been
answered.

This is the very information we had requested prior to the transfer. We
requested this information because it would have directly affected the number of
embryos we would agree to transfer. Brenda and I are morally opposed to fetal
reduction. We are also in a position to decide shortly whether to undergo the
reduction as Brenda is entering her 10th week or pregnancy.

Brenda and I feel that if carrying more than one child to term would be
such a dire risk to her that this information would have been available
throughout this procedure. If the information was available, then we feel that
it should have been taken into consideration by Dr. OTDOT on the morning of the
transfer. We would like a copy of this recommendation to review and to also
provide to the specialist who will now be advising us through the remainder of
Brenda's pregnancy. We feel that this information should have been available
prior to the transfer and would like to know when it was written. We are deeply
distressed to now be in this position and feel that it could have been
reasonably avoided.

Kind regards,
My Hubby


Nice, huh?

The response was swift, and we set up a meeting with them on Wednesday, Jan 14th.

Let me just say, that I love our RE. She has been so responsive throughout the last three years. She did not let us down this time as well.

We met with our RE while my surgeon finished a surgery on someone else. He wanted to join us as soon as he was finished. Our RE told us that this had caused a big stir at the practice. She wanted the conversation with us to take two tracks: one, what was the recommendation for me, and two, where the lines of communication broke down.

That sounded good to us, as that was our plan as well.

Our RE reviewed our history, spoken with some high-risk OB's and determined that it would not be her recommendation to have a fet.al red.uction. Indeed, in very scientific terms, she said that our increased risk of a catastrophic failure (uterine rupture in the absence of contractions), was about 0.25% higher than others. Yes, there IS a decimal place there. However, the risk of losing the other twin when having a fe.tal red.uction is 0.5%.

In turns of where the lines of communication failed, our RE pointed out 3 places: 1st when we called our RE's nurse to inquire about Dr. Surgeon's recommendation prior to transfer. That should have been routed to either our RE or to Dr. Surgeon. Second, on the day of transfer. Perhaps Dr. OTDOT should have called Dr. Surgeon to confirm, as this was not a "normal" conversation that would happen at the time of transfer. Third, when someone reads a recommendation of such dire news, it should not be done over the phone by someone other than the person recommending it.

These were the exact points that hubby and I wanted to bring up as well, so we felt comfortable knowing that there was someone who took this as seriously as we did. Our RE said that there was already a meeting being set up to discuss this incident and how to address these issues in the future. And, intriguingly, they are talking about having a discussion with the patients prior to transfer about the possibility of a fet.al red.uction and whether that information should come into play when deciding how many embryos to transfer.

Call me flabbergasted at this last statement. Am I the only one who might have a problem with reduction? Does everyone accept this possibility so easily? I think not; but, I'm not sure why this has not come up before.....

In the end, we were quite happy with our meeting. But we didn't get a chance to speak to Dr. Surgeon, as his surgery was running hours late.

We did speak to him via email over the next few days, I will update on that soon.

9 comments:

Lisa DG said...

Bravo for following up and standing up for your babies. I am so happy for you. This is great news.

sprogblogger said...

I am so happy for you all. What a relief after everything you've been through - both that you have more options than you'd thought, but also that your clinic is taking this as seriously as they ought to.

WiseGuy said...

Woohoo! I am so glad that you are coming out of this so well. And that the babies are safe. So happy, soooooooooooo happy! Do post about what the Surgeon had to say. Congratulations!

musicmakermomma said...

So happy you are finally getting some response! And it mostly sounds great, I know there are many hurdles for you in the next few months, but you are already doing great. Our bodies really do rise to the occasion, and I will just pray that all goes well. The best part of having the high risk pg (as I did) is that you get many more u/s! Sending good thoughts to you -

dreamsandfalsealarms said...

Yeesh! In our practice we have to go through all of that before teh retrieval!

Brenda said...

dreamsandfalsealarms--thanks for the kind words and reprinting the beautiful poem. I wasn't able to connect to a website for you, but I hope that your journey is going well...Brenda

I Believe in Miracles said...

Whew. Breathing a little easier here.
~~HUGS~~

Peeveme said...

So impressed with your RE and how she approached the situation. DH wrote and excellent letter as well.

Good to hear some good news. Can't wait for your update after your u/s today. Good luck!

Tomorrow we get to 12 weeks! Congratulations to the both of us.

Martha said...

Thank you for the update, I am glad things are looking up. Best Always to you and your family.