The Future of Our Frosties

When it comes to the future of our 3 frosties, should we…

  • Do all Single Embryo transfers (SET’s) meaning transfer only 1 embryo at a time, for a total of 3 possible transfers?
  • Do a Double Embryo transfer (DET) the next time, meaning transfer 2 embryos at once, and if that doesn’t work do an SET with our last embryo?
  • Do a SET next time, and if that doesn’t work, do a DET with the 2 remaining embryos?

Sounds like enough to give you a headache, I know.  According to ASRM, SET’s are generally the way to go if the embryos are blastocysts of “good” grade and you are a healthy woman under the age of 35 ( How many embies to transfer according to ASRM )

We have now done 1 SET and 2 DET’s, all ending in miscarriages. In our minds, there are both pros and cons to SET and DET.

Pros to SET:

  • Better chance of carrying to full term (especially with my RPL history)
  • Usually healthier mom & healthier baby

Pros to DET:

  • It’s like a BOGO transfer (2 for the price of 1 deal). Sounds bad, but trust me, once you have dropped 30 grand you would consider it too.
  • Do not have to worry about the sibling factor down the road (we already know we would like more than 1 child)

Cons to SET:

  • More expensive if it doesn’t work (more transfers=$)
  • Sibling factor down the road

Cons to DET:

  • High risk pregnancy
  • More money all at once being spent on the babies (makes up for those extra SET’s!)

Tough decision.  We were just as elated when we got pregnant off our SET as when we got pregnant off our DET’s.  We were just as thrilled to have 1 baby as 2 babies.  All we want is a healthy, full term pregnancy.  Right now, my hubs is leaning more towards the SET for our next time, while our current RE says we should do another DET.  I’m curious to see what the RE we are getting a second opinion from will say.  I really have no idea what to think at this point.

Since we didn’t do PGD testing, we really don’t know with certainty that any of our embryos are truly of “good” grade. Yes, they made it to day 6 so that says something positive about them.  But when it boils down to it, our embryos were graded by their looks. I like to think of it as a beauty contest that the embryologists were judging. Unfortunately, anyone who did not have PGD done for an additional 7 or 8 grand is in the same boat as us technically speaking.

Here are the judges scores from the beauty contest for our remaining 3 embryos:

  • 1 6AB (same grading as the embryo we transferred the 3rd FET)
  • 2 6AC’s (the lowest grade we had out of all 8 of our embryos, have not transferred any of this grade yet)

From my understanding, based on the Gardener blastocyst grading system (what our clinic uses, some clinics use different systems), there are 3 separate quality scores assigned to each embryo. 1 number, and 2 letters, like above.

 

As you can see, the number represents the expansion grade, with a 6 meaning the embryos have hatched out of their shell. This was the best number we could receive & we paid for assisted hatching so it only makes sense!

The first letter following the number represents the inner cell mass quality (baby component), with an “A” meaning there are many cells, tightly packed. This was the best letter we could receive in this category. This is also supposed to be the most important category, but I would argue they are all equally important.

The second letter represents the Trophectoderm quality (this is the placenta component) with a “B” grade meaning there are few cells, forming a loose epithelium and a “C” grade meaning there are very few large cells.   

All of this only matters if you believe in the beauty contest ratings they received anyways. The first embryo we transferred from our fresh cycle was rated a 6AA, the highest they come, & we miscarried right away. After that we transferred another 6AA & a 6AB & still miscarried early on. The third transfer we lost 2 6AB’s, one being baby Isaiah.

Supposedly, there is a minimal decrease in pregnancy rates when the placenta component (2nd letter) is not rated an “A” like our embryos from the last transfer, which were 6AB’s. Well obviously these statistics didn’t apply to us; it was the furthest along we ever got in any pregnancy.

That being said, we aren’t really too concerned that our remaining embies are not 100% beautiful to the embryologists because so far their system hasn’t held much weight.  I think the biggest decision we will end up having to make is how we want to transfer these precious little embies.  Whatever God leads us to decide, I sure do hope at some point 1 of them can sport this hilarious shirt!

Always Room for Improvement

Right off the bat, I should say that I know no person is perfect, and no IF clinic is perfect either. Perfection should never be the expectation. However, in any profession, if you aren’t reflecting and trying to improve or do better, that could be a problem. Experience only makes you wiser if you learn from it and apply it to future situations. I know this from being a teacher the past 5 years.

This being said, we have made a list of things we think could be improved upon at our current clinic, or any clinic for that matter.  Here is what we have so far:

  1. The most advanced uterine tests should be performed on all patients before IVF. This means a Hysteroscopy should be done on every patient prior to IVF.  You heard me right.  That is our opinion after the hell we have gone through. We are proof in the pudding that an SIS and HSG aren’t always enough.  If we had done this procedure from the start, there would be no questions in our minds or our RE’s if that fibroid had truly been around for all 3 losses or not.  
  2. PGD should be offered to all patients before they begin IVF.  Looking back, we were never informed of this option & I wish we had been. We cannot do PGD testing now with our remaining frozen embryos, as it can only be done in the days following the retrieval.  We never knew about this option until we miscarried and started searching the web. Suddenly, we started seeing all of these women who did PGD before transferring.  I mentioned it to my doctor at that point, and found out it was too late to genetically test our embryos.  Since we looked good on paper (under 35, appropriate weight, etc), perhaps it was assumed we would succeed & not need this expensive option added on. If we were to miscarry again, I do not know if I could go through another transfer. Instead we have discussed a surrogate. How much more confident we would feel knowing we were transferring a genetically normal embryo into a surrogate than not! While I get that PGD is not 100% accurate, it should be offered to the patients if it is a service the clinic provides.
  3. RE’s should discuss the worst case scenarios upfront with their patients before they begin IVF.  When we began IVF, we were so set on it actually “working” that we didn’t think of anything before that point or after that point. We didn’t discuss that only embryos making it to day 5 or 6 would be kept.  We never talked about the chances of chemical pregnancies, miscarriage, or RPL.  We had no idea we would go through the torture of beta testing and what would need to happen with all that if we ended up pregnant.
  4. The RN’s should not do all of the ultrasound monitoring during an IVF cycle.  This is probably common at most clinics simply due to the amount of patients undergoing treatment.  It was never an issue to us before we miscarried either as we do trust our RN.  However, our nurse ended up missing something early on in one of our cycles that our RE probably wouldn’t have if she had been the one doing the ultrasounds to begin with. Moving forward, we have told our RE we will not be monitored by anyone other than her and she has agreed this is best.  If our RE would like to have the nurse with her for another set of eyes, great! Bottom line…I want the person who will be transferring those embryos into my uterus monitoring it before hand. No exceptions.
  5. All viable embryos should be considered for transfer.  At our clinic, only embryos that make it to day 5 or 6 are transferred.  On the day of the retrieval you are handed a piece of paper that says “be here on day 6 at _____ am for embryo transfer.”  I know several women who have had successful day 3 or 4 transfers, so I do not think it is fair to limit to just a day 5 or 6 transfer. Thankfully, our 8 embryos made it to day 6, but what if they hadn’t?
  6. After retrieval, the embryologist should provide daily updates on how the embryos are doing.  I never once talked to the embryologist for an update. I received a voicemail the day after retrieval with a brief summary, but that was it. Those days after the retrieval are sooo stressful as it is, and remember we had to wait until day 6 not knowing anything. In my opinion, not knowing anything until you show up for the transfer is adding a lot of unnecessary stress to the situation.
  7. Get input from the patient about their IVF treatment plan.  Sit down and show patients all of the different “protocols” available for an IVF cycle. Short, mini-stim, antagonist, un-medicated, etc. Tell them the success rates with each. Explain what type of patients you have seen do well on each type of protocol.  Understand that this should not be a “one-size-fits-all” approach.  Ask them questions about their bodies, and act like they are educated. Through this process, I have learned that I know my body better than anyone. Just because Susie did well off all of the drugs you gave her, doesn’t mean I will. Show me what is available, whether it is your preferred method of treatment or not.
  8. Clinics should disclose what will happen if you do get a positive beta post IVF.  We never talked about the cost to continue a pregnancy if we achieved one.  We had no clue we would be spending thousands more on medications after the actual IVF cycle itself ended.  Medications are only paid for up until the beta test in case you get a negative.  If you get a positive, you will need meds for 6 more weeks, at least.  That adds up to thousands more.
  9. Designate clear roles within the practice.  Since it is so easy to communicate with everyone at the practice (listed as a perk yesterday!), you never know exactly who to talk to about things. For example, we have had prescriptions not called in, called in twice by different staff members, etc. It would be great if each person had a clearly designated role or each patient had a clearly designated go to person.
  10. Wellness services should be provided at clinics. Everyone goes into treatment hoping it will work the first time.  But, that is not always the case.  Actually, majority of the time it is not the case.  After all of the emotional and physical trauma, we wished that our clinic offered things like acupuncture, counseling, etc.  Don’t get me wrong, when asked, they provide recommendations, but we have ended up finding our own specialists in these areas.  It would be great if clinics started including these in their treatment packages.

Hind sight is always 20/20. But we hope this list is helpful to those searching for a clinic to call home!