After weeks of going back and forth on whether or not to seek genetic counseling, Mr. Husband and I finally caved. I figured $230 is basically pocket change compared to the almost $16,000 we have already spent* on infertility treatments. So this morning we hauled ourselves two blocks down the road to a genetic counselor and spent 45 minutes outlining the histories of our rather dysfunctional families.
Most of what the counselor had to say was no different from what I have already learned. She was able to clarify one thing about our case, though. Pip was a full Trisomy 15 that was most likely “bad luck.” The counselor was able to review the report from the lab and confirm Pip did have a full third 15th chromosome not a translocation, which would have indicated a potential genetic link. This fact makes her confident that this was merely chance. That was good to know.
The only other thing I gathered from this meeting is that my doctor should have discussed all of this with me. Not her. She asked what all Dr. A had told me and I said Dr. A didn’t tell me anything, he had his nurse call to report the trisomy 15 and that was it. I had to call back a week later to find out if it was a complete or mosaic trisomy, and even then she could not tell me. While the counselor did not say anything bad about Dr. A, it was upsetting that she implied he should have taken time to discuss the results with me. We spent a lot of money to make embryos with this doctor, the least he could do is take 15 minutes for a sit-down to review test results.
I have been reading a book that Stork Stalking recommended called Coming to Term: Uncovering the Truth About Miscarriage by John Cohen. This is a great book for women dealing with loss – well researched and fairly well written, the author presents many infertility treatments and the research that backs them up. The book is also tremendously inspiring and reminds the reader over and over that the vast majority of women with a history of loss will eventually go on to carry and deliver a healthy baby.
Around page 66, Cohen introduces a study done in 1984 that demonstrated “tender-loving care” can dramatically increase the live birth rate in women with a history of miscarriage. He examines this study more on page 175 saying that,
“IN ONE OF THE MOST PECULIAR MISCARRIAGE STUDIES EVER published, researchers in Oslo in 1984 reported that what they called “tender-loving care” had a dramatic impact on pregnant women who had a history of repeatedly miscarrying. Hard-core biomedical researchers typically blanch when confronted with such soft, touchy-feely findings. But the researchers who ran this study, Babill and Sverre Stray-Pedersen, a husband-and-wife research team who worked in the obstetrics and gynecology department of the University of Oslo, had hard-core credentials. Between them they studied infections and miscarriage, problems with amniotic fluid, chromosomal abnormalities of sperm, and osmosis in cellular membranes. The Stray-Pedersens found that out of a group of sixty-one pregnant women, 86 percent given tender-loving care, or TLC, carried to term, while the success rate plummeted to 33 percent in the group that received no specific treatment.”
Cohen, Jon (2005-01-11). Coming to Term: Uncovering the Truth About Miscarriage (pp. 175-176). Houghton Mifflin Harcourt. Kindle Edition.
86% carried to term when treated with tender-loving care. This is a big number, y’all. Cohen explained that “tender-loving care” included weekly monitoring, emotional support, bed rest during the two weeks where prior losses had occurred, etc. The Stray-Pendersens’ study was meticulously conducted and sparked the interest of medical professionals across the globe.
Looking back at the care I received over the past three months I can honestly say I was not treated with “tender-loving care.” I was rushed out of exam rooms. My questions were not always answered. When I could not see Pip’s heartbeat on the ultrasound care was not taken to show me. When I experienced bleeding I was brushed aside and told that they would see me in a week. I never once left that clinic feeling “cared for.”
That said, Dr. A did squeeze 27 eggs from my ovaries and his embryologist cultured 6 high quality blastocysts. The first embryo thawed survived and did implant. So I’m not saying Dr. A and his team are not great scientists because obviously in my case they were. What bothers me is that their lack of bed-side manner and attention to care could have had major implications if Pip were genetically normal. Am I willing to risk my next hopefully genetically normal transfer with a clinic that does not offer compassionate care? Is it worth saving a thousand bucks to go to Dr. A when much better clinics with good reviews and excellent success rates are available? I am starting to think not.
Empowered by this revelation I decided to take back control of my situation and set up appointments at two clinics in Cincinnati, one that many of the women in my support group go to and one that has some of the highest FET success rates in the country. Going to Cincinnati is a gigantic pain in the rear, but one I’m willing to deal with if it means I’ll get better treatment than I have received in Lexington.
For the first time since I experienced the bleeding with Pip I feel a tiny glimmer of hope. The genetic counselor advised us to treat this loss as a fluke; I have appointments with new clinics touting better success rates and personalized, compassionate care; and I have five blastocysts hanging out in a cooler waiting on my snugly ute. Maybe all is not lost after all?
* Holy shit this is the first time I have added that number up and, fuck, it is disturbing.