Our Tiny Miracle - Kaylee June

Let me tell you about a little girl who has stolen our hearts, but almost never came to be.

After three natural pregnancy losses and two rounds of IVF (in-vitro fertilization), we started our third round of IVF in the summer of 2018. Two of our pregnancy losses were due to chromosome issues so we did PGS (Pre-implantation Genetic Screening – checking the chromosomes of embryos for abnormalities) testing for our first two rounds of IVF. All (4) of those embryos were deemed “abnormal”… they either had an extra chromosome or they were missing one. And they were all issues that were not compatible with life. So going into round 3 we were looking for a “fresh start”. To our surprise, our doctor (who is amazing at thinking “outside of the box”) suggested we forgo the PGS testing for our 3^rd round. Each of our chromosome abnormalities, including two of the pregnancy losses, were all different abnormalities (it was a different chromosome missing or extra each time). So he thought it wasn’t an underlying issue with a particular chromosome and it may be the test results. To sum it up – in a very non-technical way (and please remember I am NOT a medical professional. You should discuss with your doctor based on your situation)… when they test an embryo they are only testing a group of cells on the outside layer of the embryo. So it’s possible that the majority of the cells in the embryo could be normal, but the group of cells that they grab are abnormal. Therefore perfectly good embryos can be discarded. Sometimes embryos are also able to correct themselves as they grow. I’m not saying these situations happen often, but they do happen. (Note: I am also not saying that we are against PGS testing. I think it’s a very personal decision and it’s made on a situational basis.) They can’t test the entire embryo because it would destroy it. Hopefully I’ve explained that well enough – I know whole papers can be written on that subject but I’m just trying to give you a quick synapsis. Okay, back to my story.

So we went in for our 3^rd round of IVF and agreed not to test the embryos. We were scared, but also hopeful. It was something new to try. We transferred two fresh “day 5” embryos with that cycle – chemical pregnancy (very early miscarriage). We had two more frozen “day 6” embryos which we decided to transfer one at a time (I know, this doesn’t make sense – we have fraternal twins – just hang with me). First frozen transfer – big fat negative. During this time, we also got a bill from our fertility lab that the storage fees for our frozen embryos from the first two rounds was due. We honestly thought those embryos had been discarded, but turns out we never signed the paperwork. So we had to make a decision… do we discard these embryos or pay for another year of storage for embryos who were deemed “abnormal” and not compatible with life? Reid and I were discussing and he had a thought. Why not take a shot with those? Um, excuse me? No way. Don’t sign me up for another miscarriage. But it was a decision we needed to make together and he felt strongly about not discarding them just yet. So we talked with our doctor who referred us to a genetic counselor.

The week before we were to transfer our last untested embryo, we had a phone consultation with the genetic counselor. I wasn’t really open to transferring any of those embryos and just assumed the information she gave us would back up that decision. But that wasn’t necessarily the case. We talked about the “flaws” of the testing (my words, not hers) and how perfectly good embryos could be discarded. That’s not common, but it happens. She also discussed with us "mosaic" embryos. I had heard that term, but wasn’t sure exactly what it meant and how important it would be to us. Turns out, our clinic doesn’t automatically provide the information on mosaicisms. A mosaic embryo means that the grouping of cells that they tested during the PGS testing has both normal and abnormal cells. But because it shows any abnormal cells, they automatically deem it as abnormal. We had no idea whether we had any mosaic embryos, but we went back and requested that our clinic release that information to the genetic counselor. I know some of you may be sitting there saying, “why was that information not automatically given to you?? Why would they withhold that?” And to that I will say every clinic is different. I don’t believe that our clinic was wrong in any way to withhold that. There is a lot of debate regarding mosaic embryos. But I digress. We requested the information, and knew it may take a couple of days to process.

Fast forward a few days and it is 3:30 the day before our final embryo transfer. I had honestly forgotten that we were waiting to hear about the results because I was still pretty sure we wouldn’t be transferring any of those embryos. Reid was on his way home from work and he calls me and says, “did we ever hear about the mosaicism of the embryos?” It dawned on me then that we hadn’t, so I called the genetic counselor. She answered, said she had just received it, and that one of our embryos was mosaic. The “abnormality” that it had shown was Monosomy 13 and it was female. I knew as soon as she said it that we’d be transferring that embryo as well. Reid and I had discussed our criteria for transferring a mosaic embryo prior to that phone call and this embryo fit that criteria (if you want more details on that, send me a message and I’m happy to share). The genetic counselor and I then discussed the pros and cons of transferring it (cons: it could lead to miscarriage if it was in fact mono 13, or there was a small chance it could actually be trisomy 13 which would have greater health problems and a short life expectancy if born) and then I called Reid. He said “we’re going to do it – right? I mean, I feel like we should.” And he was right. It was worth the chance. So we rushed up to our clinic to sign paperwork before they closed so we could transfer two embryos the next morning – our last untested embryo and our mosaic female embryo. It was easily the best decision we’ve ever made. That little “abnormal” embryo that was to be discarded is now our healthy, breathing, thriving, tiny little Kaylee girl. And let me tell you, there’s nothing abnormal about her. She’s our little miracle that almost never came to be.