Mars and Venus in the Office of the Genetic Counselor

This is part one of my account of our Day of Tests at the Colorado Center for Reproductive Medicine

We flew to Denver on a Thursday afternoon, March 22, our puppy slightly sedated and stowed safely beneath the seat in front of me. It was an hour’s wait at the rental car agency, before we got a car, and then, when we’d loaded our bags and the puppy and ourselves into the car, we discovered it wasn’t working, so we had to get a new one. Then it was a 45-minute drive to the hotel, and takeout for dinner, and then we were ready to get some sleep before our big day. Except that I couldn’t sleep at all until 6 in the morning, and then the puppy wanted to go out at 7, so I was not at all rested when it was time for our first appointment at 9. And since I had to give up all caffeine in preparation for my uterine blood flow Doppler ultrasound, including decaf anything and including chocolate, I was really running on adrenaline.

Oh, one more thing, before I came to CCRM, I had the idea that it was going to be both technically amazing and also patient friendly. I had an image in my mind of arriving and meeting my nurse and then being talked through everything that was going to happen and then having that nurse check in with me throughout the day. This is not the way it works. When we woke up, there was snow on ground. So my first experience of the day was of watching my puppy trying to figure out where all the grass had gone. And then we crated the puppy and got in the car for the 1.5 miles to the clinic. Between my inability to navigate properly using my iphone and the snow-related traffic, we were late to our appointment, so my husband dropped me off right in front of the door, and I stumbled through the slush to the front door. When I opened the door, I saw a large, pleasant waiting room, with a water feature in the middle of the room, water streaming over a long granite slab that read Colorado Center for Reproductive Medicine. On either side of the room, there was a long desk, and women sitting behind the desk and men and women in line in front of the desk. But there was no sign explaining the division of labor between the desks. So I went to the one on the right, the one with the shorter line of men and women, and when I got to the front of that line, a not-particularly-friendly woman told me to go to the other line, so then I stood in that line, and finally was able to check in. Whereupon I learned that 1)I needed to pay for each appointment as I went along during the day, and 2) that I had left my wallet in my hotel room. I convinced this woman, also less-than-friendly, to let me pay for my first appointment after lunch, when I could retrieve my wallet while running back to the hotel to walk the puppy.


Our first appointment was with the genetic counselor, Danielle. She had been through our files and knew we were interested in the CCS testing, so she explained it in detail, even more detail than the Schoolcraft book. In addition to the CCS testing on the embryos, which is basically done to count all the chromosomes on all the embryos to make sure we don’t have extra chromosomes that cause fatal genetic abnormalities and thus result in miscarriage, we talked about all the potential genetic diseases my husband and I might be carrying, given our ethnicities and family histories.

Here’s where the fun began, with the family history. When she asked my husband the cause of death of his paternal grandparents, he reported that his maternal grandmother had ALS, and his paternal grandfather had Huntington’s. Now, I had just heard about the ALS this fall, when I saw it on his family history form for our last round of IVF. And that was enough of a shock, since I had never heard about it previously in our 3.5 years of marriage or 3 years of dating prior to marriage or 15 years of friendship prior to dating.

But, okay, it was on the form that both his paternal grandmother and paternal grandmother died of ALS. What was done was done, and we moved forward.

But now, we were sitting in front of the friendly blonde Colorado genetic counselor,and my husband has just told us that his paternal grandfather died of Huntington's disease. And all of a sudden we are talking about whether my husband’s father is exhibiting any neurological symptoms and I am thinking about the character on the television show House who has Huntington’s and how it is clearly a very life-changing piece of information, and whether we will find out whether my husband has it and does this mean he will die early, and what will I do and where will I move and My God I wish I had a double latte, and the blond genetic counselor is still talking and suddenly my husband says, “Excuse me, can I just say that I made a mistake?” And I turn and look at him, and the blond genetic counselor says “Yes, please! It’s not Huntington’s, is it?” And my husband says, “No, it’s Parkinson’s.” And the genetic counselor says, “I am so happy to hear that.” And I say, “Yes, so am I, especially since this was the first time I’d ever heard anything about Huntington’s.” And the Genetic Counselor looks at me and says, “Wow, I really have to give you credit. You didn’t bat an eyelash.” And I turn to my husband and say, “And what is this about Parkinson’s? I thought it was ALS?” And he says “No, I asked my mom, and she says that my grandfather had Parkinson’s.” He takes my hand in his and says, “I’m sorry.” And he turns to the genetic counselor and says, “I’m so sorry. I’m actually not an idiot. I’m actually very smart. I just haven’t had my coffee today.” And the genetic counselor just seems extremely happy not to have to counsel us about Huntington’s, and does not suggest that we go to some sort of remedial marital communication class to discuss our inability to communicate about our respective family histories of genetic disease.
And thus concluded the first half hour of our day at CCRM.

Surrey with the Gene on Top

Two weeks later, on April 13, I had my phone consult with Dr. Surrey of the Colorado Center for Reproductive Technology. He had a very frank but reassuring manner. He did not mention donor egg OR advanced maternal age once. I really appreciated this. Perhaps he realizes that if you've come this far, you already understand how being over 35 leads to fertility issues, and that you don't need to hear it any more.

He said I am the perfect candidate for genetic testing. He said, most doctors don't like to talk about bad luck, but it is possible that my three miscarriages are the result of that very thing. He said that it is also possible that we are producing a greater number than usual of abnormal embryos, (his nice way of talking about the dreaded Advanced Maternal Age) and so CCS/CGH genetic testing would help us select the right ones.

He said, "Now if we do test the embyros, and all of them turn out to be abnormal, then you will be two very unhappy people, but you will be two very unhappy people with a lot more information."

Again, I really appreciated that he acknowledged that finding that out might actually cause those things we humans like to call e-mo-tions. Maybe these CCRM doctors take some sort of class on human/fertility patient interaction. Maybe that's the next big money-making thing--training your medical professionals to talk to patients. It sounds crazy, but it just… might… work.

But I digress.

As soon as I could, I asked about the chances of a woman my age not producing any normal embryos.

They have done CCS/CGH testing on 49 women in my age group 35-37. Of those, 1 out of 49 has had zero normal embryos. Now, I would not be surprised if my particular brand of bad luck caused me to be patient #2, but I guess that number is lower than I actually expected, so that might be considered good.

At this clinic, they do the CCS/CGH testing of Day 5 blasts, which enables them to biopsy a 60-70 cell blast instead of an 8 cell embryo. (At OHSU, for example, they take one cell out of an eight cell day-three embryo.) Because there are more cells, and they can take more than one cell per embryo, they avoid the risks of mosaicism. In fact, they are actually biopsing the trophectoderm, which becomes the placenta, instead of the part of the blast that actually becomes the baby. I still don't understand why this method takes six weeks, but whatever--- these people seem to know what they are doing. He said that actually, they've been getting their results back a little faster lately. There is a thorough explanation of this testing method in the Schoolcraft book, If at First You Don't Conceive.

He also really made the argument to get all the embryos vitrified and let my body get back to normal before any transfer. He talked about some study that showed a much higher rate of implantation for a uterus that has been properly prepared and has not gone through stimulation and retrieval that cycle. It was something to do with egg donors and egg recipients. It was like 70 % implantation in the egg donors themselves, and 85% implantation in the egg recipients who had not gone through controlled hyperstimulation in the same cycle as the transfer.

Here is the only statistic that stuck in my husband's head--
For those who transfer a CCS-tested blast, the miscarriage rate is 4.5%

Tests for me:
FSH
AMH
Antral Follicle Count
hysteroscopy (the kind where you are awake)
doppler blood flow analysis

Tests for DH:
Sperm Chromatin Assay
Karyotype
screen for Ashkenazi genetic diseases

Sadly, none of this information was conveyed in song.

But a girl can dream.

We now return to our regularly scheduled programming.

I seem to have left you with a very depressing blog entry in January. My apologies. Every week since then, I kept thinking I would write, and then something would happen, and I wouldn't write, and then the prospect of catching you up on everything that has happened proved daunting, and nothing would get written. So now, I'm going to do my best to tell you what has happened in the last few months. It may take a few posts.

After my Christmas miscarriage, I tried to regroup. I went to the San Francisco Yoga Journal conference, where I tried to make friends with my body again. I saw my wonderful Bay Area friends and checked in with my Palo Alto doctor. I had a whole bunch of blood (15 vials) drawn for a recurrent miscarriage analysis. I went back home and prepared for a transfer of two of my frozen embryos by eating well, doing yoga, and playing with my puppy. The recurrent miscarriage testing showed that I am heterozygous for a clotting thing called MTHR, and so I add folgard twice a day to my baby aspiring and prenatal vitamin regimin.

I got pregnant from that transfer, but the pregnancy only lasted a few days. They call this a chemical pregnancy, the kind of pregnancy you wouldn’t even know about unless you were in fertility treatment and were getting blood work done early and often.

Immediately after the news of this third pregnancy loss, I went into full research mode. I remembered that a friend of mine had mentioned that a clinic in Colorado had the best IVF numbers in the country. I started reading all the fertility boards I had been avoiding for so long. I figured out which clinic was the famous one. I called to make an appointment, but since it was already 5 pm in Colorado by the time I found out I was losing the pregnancy, I had to leave a message. During that weekend, I did not feel depressed. I did not feel sad. I just felt compelled to find more options. I did a lot more reading about adoption, both domestic and international. I ordered two books on surrogacy and two books on adoption. (Apparently Amazon is one of the primary beneficiaries of my fertility woes.)

I found a local acupuncturist. I ordered the book the Colorado clinic had just put out, and read the chapter on genetic testing of embryos. That book mentioned a book on Traditional Chinese Medicine treatment of infertility, and so I bought that book as well.

On Monday, I was ready to make some calls. The first call was to the Colorado clinic. The receptionist gave me the first available phone consultation—6 weeks later. I learned that I would need to send all of my records for review before that consultation, and that then, I would need to go to Colorado for a full day of tests about a week after the beginning of the next cycle after the phone consult. And then I wouldn’t be able to start an actual IVF cycle until two or three months after that.

I felt the beginnings of that state of angry and sad and overwhelmed that my lack of fertility has periodically brought up. I tried to line up other options for the interim. I asked my local RE when I could do another frozen transfer. This clinic does their IVF in batches every other month, so I knew that the next retrieval month would be in May. The nurse said I would probably miss that one because my HCG levels would probably not go down to zero in time, so I would have to wait until the next cycle in July. JULY! So then I went to my next best option, exploring the idea of shipping my frozen embryos to another clinic, this one in Portland, to do a frozen transfer earlier than July. The nurse there gave me the first available appointment-three weeks away. This nurse and I had a very amusing conversation in which she suggested it would be best to pick up the “cooler” from my current doctor’s office, and drive my embryos to Portland myself. Ah, the comedic possibilities.

So then I called an adoption agency, and they told me that they ask prospective adoptive parents to stop all fertility treatments when they start the adoption process, because they say one needs to mourn the loss of her fertility before one can bond with an adoptive child. I get this, I really do, but when the wait for a child is over a year, and the wait for an IVF cycle is 5 or 6 months, it seems cruel to not allow me to start the paperwork while I am waiting for something, anything, to happen. Anyway, all of these frustrating phone calls released a great tidal wave of emotion in me. I got back into bed with my puppy at my feet, and I cried and cried and cried for a few days. Then I got back out of bed, and went to my first acupuncture appointment with a new acupuncturist, to the gym, and a few weeks later to the doctor in Portland.

The doctor in Portland was super-nice, but he had not reviewed my records before I arrived, so we spent a good deal of time going through my medical fertility history. He made notes on a stack of blank, unlined paper with blue pen, and when we were done with our dialogue, he said, “Well, I see the problem.”

“Oh, good, I thought.” This dude has noticed something that no other doctor has noticed. Now he will tell me to make some minor lifestyle change, like sleeping on my right side instead of my left, and then I will get pregnant and carry to term.” Okay, I didn’t really think this. It was more like, “If I were naïve, I might think that this man is going to be able to help me in some non-invasive way, but really what he’s saying is that if I haven’t gotten pregnant by now, with all the interventions I’ve had, it’s because things are really messed up.” And in fact, he started listing things on his paper: the endometriosis, the miscarriages, the trisomy 7, the chemical pregnancy, and at the bottom of the list, he wrote the number 37, my age, and next to it Advanced Maternal Age.

“As you get older, the number of aneuploid, or irregular, embryos increases,” he said, circling the number several times.

“So I would recommend doing genetic testing to see if you can generate any normal embryos at all. Because if we do another round of IVF and we test the embryos, and because of your Advanced Maternal Age, none of them are normal, maybe you want to move to donor egg.
Now, in fact, I did not even know that this clinic did the kind of genetic testing I was interested in, and I had intended to go to Colorado for my day of tests, and use the Portland clinic to do a frozen transfer of my existing embryos. And the last thing I intended to do was to use a donor egg. So I said so.
“Yeah, I don’t actually want to do donor egg,” I said. And I was about to say, “I will move to adoption if IVF with my own eggs does not work out,” but the doctor gently interrupted me.
“No one wants to go to donor egg,” he said. “But it can be a really great option, particularly if you have a younger sister or cousin.”

“But I don’t have a younger sister or cousin,” I said.

As many of you know, I am an only child, and my primary goal in building my family is to acquire more than one child, especially since not having any siblings has been particularly difficult for me in the wake of my father’s death. And you will notice that I am putting the words Advanced Maternal Age and Donor Egg in bold. This is because that is what it sounds like to me when people use those words, like they are shouting, even when an impartial observer might say that they are speaking in a normal tone of voice.
And the doctor said, “Are you sure? Because all women are worried about using a donor egg but if you have a younger sister or cousin, you’d be surprised by how much DNA you share. My brother and I, for instance, are very similar, because we share so much DNA. It’s just a great way to preserve your genetics when you are of Advanced Maternal Age.

It was at this point that I decided I could not work with this doctor. He was very nice, and very competent, but I cannot deal with something who does not listen to me, and who insists on praising the glory of genetic connection, while at the same time making me feel like a shriveled old crone and reminding me about my lack of siblings.

We continued our conversation. I asked polite questions about the genetic testing, and we decided that the next step was to have my day 3 FSH (follicle-stimulating hormone) tested.

“I suspect it will be high,” the doctor said. For those of you who don’t know, high FSH is bad.

“The last time I had it tested it was 4.7,” I said.

“Well that’s too low,” the doctor said. “That’s almost anovulatory.”
My heart started to sink, but then my brain started working. “But I just did a round of IVF in November, and I produced 32 eggs,” I said.

“Oh, yeah,” the doctor said, standing up and walking toward the door. “That’s pretty good. But I expect that it’s gone up since then.
I drove back the 2 hours from Portland to Eugene and fell into one of my now-patented angry, crying funks. That one lasted a few days, and by the end of it, I was certain that I needed to move on to the Colorado clinic.

Nayla