Skip to content

Genetic Counseling and Tender-Loving Care

06/27/2012

Belle

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.

Advertisements

30 Comments

Post a comment
  1. June 27, 2012

    I have been following your blog for a while, but I’m not sure if I’ve commented before. I was so happy for you, then devasted for you, and now I feel hopeful for you. I hope that you get the TLC you deserve. Obviously, you pay for it, but besides that, you as a person and future mother deserve people and nurses who care and nurture you, not brush aside your concerns. Sometimes I think well-informed women scare doctors and nurses, but I’d rather be a well-informed pest than a naive patient treated as just another “client.” I’m glad you’re doing something for YOU, and that you have a glimmer of hope 🙂 you’re in my thoughts.

    • June 28, 2012

      Thank you for the comment and for the good thoughts. I feel that well informed women scare doctors, too! I HATE it when I have to break open a can of “I already know this please tell me something new and beneficial” with a doctor but sometimes it is the only way.

  2. June 27, 2012

    86% is an amazing number. I hope you find what you need in Cincinnati.

  3. June 27, 2012

    I loved reading this post and feeling the hope shine through in your words! It makes a lot of sense, and I’d say $1,000 is not too much to spend on being treated warmly and with compassion (though that she be a given at all clinics/practices, but unfortunately is not). Knowing that Pip’s loss was a fluke, albeit a tragic one, must bring some relief. I just know one of those frozen embies is your future babe… And it’s gonna happen soon! So happy to hear this news and the progress it promises!

    • June 28, 2012

      Thank you Kate. I’m glad to know that someone can sense me healing because some days I can’t tell it myself!

  4. June 27, 2012

    I am sorry you did not get the TLC you deserved. I felt this way with my OB (she took 8 days to call and tell me that my baby B had died even though she knew I was waiting by the phone for her to review results with me). It was a horrible feeling and just added anger to the devastation. I fired her ass (after telling her that she had effed up big time and filing a complaint). I feel much better with my new Dr. I hope you find the same comfort, whether you stay or leave. The only thing I would caution against is with moving your embies….do it yourself. I don’t know if you read Janet off Kilter’s blog (on my blogroll) but her frosties fell out of the container in the move, and essentially nobody would take the blame. They were just done. It was horrible.
    On the other hand, dish baby moved hers herself and …..identical twins :).

    • June 28, 2012

      I thought of you and the hell you went through with your OB while writing this post. It breaks my heart that it is ok for doctors to give care that is so lacking in compassion, especially when dealing with pregnancy/loss/infertility. Thanks for the heads up about embryo transfer, too. I did not think about this and will make sure that no matter how we transfer, that we are heavily insured as to cover any mishaps!

  5. June 27, 2012

    TLC is SOOOO important, even just in you feeling confident in your cycle. It’s one of the big reasons I am shlepping to Manhattan for doctor appointments after moving out of the city, because my OB calls me and emails me back and stays to make sure she answers all my questions. I say, go for it, find a doctor you feel more comfortable with. You deserve it!

    • June 28, 2012

      It is a damn shame we have to “shlep” to other cities and burrows to receive quality care. I am glad that you found a great OB in Manhattan, though! My brother had incredible care at Mt. Sinai in Manhattan, too.

  6. June 27, 2012

    That is a really interesting study! TLC huh. I think it is also important for not only the doctors to treat the pregnancy with TLC, but that we do that as well. I know as an infertile it is extremely hard not to get caught up with the worry and stress of a possible loss, but we need to fell confident and happy about the life growing inside of us. I was so guilty of this with my first pregnancy. I was constantly worried from the beginning that I was going to loose it. And I did. I am determined to make things better this time around and enjoy this gift for as long as I have it.

  7. Life is Hard #
    June 27, 2012

    TLC is important. I love my doc, she gives me a lot of attention and tries to calm me down. a good doc does wonders. I hope you can find the doc you love….

  8. June 27, 2012

    That book sounds fantastic! I realized after getting pregnant, that the RE’s office is really not equipped to handle pregnant women. They don’t focus on it much since you’re only there typically for the first 9 weeks. I hope the other clinic is better for you, otherwise, I guess you’d have to set up a regular OB who is “on board” ahead of time.

    TLC seems so simple. Pay attention, offer support. I hope you get lots of it the next time!

  9. June 27, 2012

    Wow. What an incredible study. Who’d have thought? Be nice to people and they’ll be healthier. Genius! (Sarcasm intended there!) I am really hopeful that things work out in Cincinnati! 🙂

  10. June 27, 2012

    I hope you find the kind of care you’re looking for, and I’m so sorry you didn’t get it when you needed it most. Success rates are great, but the important thing is you feel cared for, not like a science experiment. Hugs.

  11. June 27, 2012

    Cohen’s book is most certainly a must read for anyone who has experienced a loss. The TLC study is fascinating, but not surprising. When patients feel like they can trust their care-providers and are not being brushed aside, the outcome of any treatment is always better. I think making the appointments is wise, as it will give you a chance to shop around and figure out if being with Dr. A will work for you and Mr. Husband. But I would also voice your concerns with your current clinic. I think practitioners benefit from this type of feedback and having a frank talk may help you both.

    Thinking of you.

  12. lrm1102 #
    June 27, 2012

    I am so sorry that you are going through this! Thank you for sharing the study – it makes pure sense. It always amazes me how many drs have no bedside manners. I wish you the best and hope that your appts in Cincinnati go well and that you find a dr who will treat you as you should be treated!

  13. Amber #
    June 27, 2012

    I am so glad you made the appt with the counselor. It sounds like it helped tremendously!

  14. June 27, 2012

    oh, Belle! I’m so glad for you! It must be a relief to know the abnormality was a fluke. And thanks for the info from the book and even sharing the book. I’m going to look into it. I am SO terrified of m/c again so it helps to hear about the TLC factor. I’m also going to start researching other clinics in our area. I only go to this one because my medical group contracts with them, but it’s really terrible bedside manner. I don’t even talk to a nurse – i talk to my RE’s “coordinator.” I’m glad for the glimmer on the hope you now have Belle and hope this new clinic is it for you!

  15. Jen #
    June 28, 2012

    Let me know when you make it to cincinnati! I’d be happy to meet up for coffee or whatever!

    • June 28, 2012

      I did not realize you were in Cinci! I go there frequently to shop, eat, thrift, Ikea, etc. I’ll be sure to let you know when I’m up next time!

  16. June 28, 2012

    Yes, you really do deserve respect, courtesy and lots and lots of TLC. I’m glad you don’t feel trapped with your current doctor anymore. If you do decide to switch doctors, don’t forget to tell them how had your protocol was…maybe they can switch you to an easier, better one.

    I can feel you getting stronger with each post. And with the news that this particular trisomy was not genetic, I have SO MUCH hope that your next FET will be your last…at least for a long time 🙂

  17. June 28, 2012

    Good for you on going to go and see other clinics. Apart from paying for the service you are being provided with by your doctors, Im a firm believer that you are a person and if your not comfortable and not feeling like your doctor actually cares about you as a human being going through a horrible time, then its time to move on. I went through 4 different Gynae’s before deciding to stick with the one I have now.

  18. Patricia #
    June 28, 2012

    SO GLAD YOU ARE DOING THIS!!! let me know how it goes, i have been seriously thinking about doing the same thing with my 3 little frosties when the time comes that we want to go for round number #2. I’d be interested to know what the difference is in cost/tranferring them up there. I feel 100% the same way you do about Dr. A, but at that time we didn’t know anyone else going through IVF anywhere else.

    • June 28, 2012

      I will be sure to report back! My appointments on on July 18. I’ll make sure to bring my notes to the August meeting and share with everyone else.

  19. 35life #
    June 28, 2012

    You definitely deserve to be treated warmly and should be given all the time you need. I hate that we often need to do all the legwork and if we don’t bring things up on our own, the doctors won’t either! Change can be good! I’m switching RE’s myself. Same group, but the head of the dept this time. I’m not messing around and neither should you. 🙂

    • June 28, 2012

      I’m glad you are switching! We need to stand up for ourselves and be proactive.

  20. June 28, 2012

    I must admit I definitely got some TLC with pregnancy #2 and it helped me immensely. Everyone was willing to do extra ultrasounds, extra appts, extra anything really to help ease the anxiety that comes with a pregnancy after a loss. I felt like such a nutball most of the time but they all went out of their way to make me feel NOT crazy and to just let me know that they were there for whatever I needed. They were also super calm and NOT overzealous with anything, like they made it seem like “Of course you’re still pregnant, of course there’s a heartbeat.” without being patronizing or belittling me, like pregnancy was just so normal and they had such confidence that one miscarriage did not mean another miscarriage and of course I could carry a pregnancy to term. No extra appts or extra ultrasounds because they assumed I was high risk or anything like that, just whatever I needed whenever I needed it and everything else just like anyone who hadn’t had a miscarriage or suffered from infertility.

    I did not however get any TLC from my RE, he told me I needed therapy for crying in his office 2 weeks post miscarriage and that I definitely wouldn’t ovulate and I really needed to seek help to be emotionally ready before I came back. Looking back, what an ass!

  21. July 1, 2012

    That is why I refuse to really add it up. I would probably cry. And its not over yet.

    I am so proud and happy that you are taking charge! You need to feel cared for! I hope you find someone that makes you feel that way. Big Hugz Belle!

Trackbacks & Pingbacks

  1. What I’ve learned after 11 failed cycle & 1 pregnancy loss | Dog Mom Chasing the Stork
  2. Revisiting: The Importance of Second Opinions | Scrambled Eggs

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: