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Miscarriage – The Loss, Pain and Moving On

Now that my “IVF 101” series reached embryo transfer and the “two-week wait,” I wanted to touch on something that hopefully you won’t have to go through after a successful pregnancy via IVF: a miscarriage.

The pain from a loss due to miscarriage is unlike anything like you might experience in your life – and it’s a unique experience to one’s infertility, or rather fertility, journey. I’ve been fortunate, in that although I’ve had a rough infertility journey, I did get pregnant each and every time I did IVF. I was even lucky enough to get pregnant on my own. Unfortunately, though, some of those pregnancies didn’t make it past the first two months and ended with a miscarriage. I am not sure which is worse: getting that amazing news that the IVF worked and you’re pregnant, only to be let down a few weeks later that you lost it; or is it better to just “cut your losses” and hear that the cycle didn’t work and you’re not pregnant.

Now, all these years later, I can finally get through a conversation saying, “I had a miscarriage – rather, miscarriages” without welling up with emotion. Well, sort of – some days it’s still hard to get the words out without tears. Some days out of the blue I’ll see a pregnant woman or a newborn and find myself stopped in my tracks on the verge of tears. I will never forget the pain of those first miscarriages before my oldest was born. Or even the pain of my third miscarriage in between the births of my children.  Looking back, I see that each miscarriage brought a unique sense of emotional pain, road to recovery (both physical and mental) and ensuing journey forward.

Each time my journey forward included a look back since there was always a feeling of blame and shame. Could I have done something differently? Was it my fault? Why was this happening (again?!?) – it’s like some cruel joke that the universe is playing on me. There certainly were times when I felt very alone.  Women don’t talk about miscarriages and, therefore, it can be a very isolating experience. Just like infertility in general, because women don’t always share information, others miss out on opportunities to know that their friends understand what they’re going through and could be a in position to help and support.

Statistically, one in three women experiences a miscarriage in their life. I’ll repeat – 1in 3!!! In fact, I bet if you mention it to a friend, they’ll say, oh yes I had one too. Unfortunately, despite miscarriages being so common, it’s hard for me to hear that women aren’t supporting each other by talking about it. Imagine how it might help your friend or family member to know they are experiencing what you did. Listen, I know it won’t take away your personal grieving, but it might help you process.

While I certainly have no clinical training, I realized for myself that moving on from a miscarriage was vital my overall well-being.  I am sure that if you speak to five different women who suffered a miscarriage, you will hear five different ways to cope with the situation.  For me, my saving grace was my need to plan and focus on my unwavering objective to have a family.  My miscarriages were devastating, and sometimes debilitating, obstacles that I needed to conquer.  As a planner – perhaps on a compulsive level – I needed to know what was going to happen next and what my next move would be in response. So once I allowed myself the time to cry and be sad (which is completely normal), I was always ready to enact the next plan.

It is important to note that I suffered miscarriages both before I successfully had my first child and after.  So depending on the point in my life, I needed to consider options such as whether I wanted to try for another round of IVF; if so, then do I start over “fresh” or use “frozen;” or do I simply take a break from all fertility treatments and reassess my feelings and desires? Sometimes after taking a moment to reflect, your decision may surprise you.

I’d like to stress that I believe there is no right way to feel after a miscarriage. There is no “you should do this or do that.” Only you can determine what is right and feels natural to you. I think that you should take the time you need to grieve, feel the pain and then like any loss, learn to live with it but do not let it define you. Make a plan for your life and keep on that journey – even with those unexpected detours.

Stop by my blog, where I share my infertility journey with laughs along the way!

Stay positive,

Sara

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NYTimes Quotes Dr. Gleicher on Danger of PGS

NYTimes' article on embryo screening

NYTimes' article on embryo screening

A New York Times article exploring the rapidly evolving (and aggressively marketed) world of embryo screening technologies for in vitro fertilization (IVF) quoted Dr. Gleicher.

The article, published in NYTimes on July 11, 2014, examines several tools and techniques, including preimplantation genetic screening (PGS), developed with one main purpose: to identify the healthiest embryos for transfer in IVF cycles. The premise of the tools and techniques is that by selecting the “healthiest and strongest” embryo from those available after an IVF cycle, IVF centers can improve pregnancy rates for their patients, and potentially reduce the number of embryos necessary to be transferred to offer a decent chance of pregnancy.

It is known that as many as 50% of embryos produced in IVF cycles, even in young couples, are aneuploid (chromosomally abnormal). Chromosomally abnormal embryos usually fail to implant when transferred into the uterus, and even those do manage to attach to the uterus are usually miscarried in the early stage of pregnancy. By eliminating chromosomally abnormal embryos from the candidates for transfer, theoretically, IVF centers should be able to improve pregnancy chances because the embryos that are selected after screening and transferred into the uterus should have a better chance of implantation and subsequent development.

However, as our recent OPINIONs commentary piece (among numerous other CHR publications both here and in medical journals) pointed out, this approach is unlikely to benefit older women and young women with premature ovarian aging (POA). These women, who have diminished ovarian reserve tend to produce a very small number of eggs and embryos in each IVF cycle. When there are only one or two embryos to “choose from,” screening for chromosomal abnormalities does not offer much added value to these patients for a couple of reasons. For one, their embryos may not survive to the 5th day of culture (which tends to be the PGS day of choice in order to allow for a biopsy of more than one cell), while they may continue to develop in the more natural environment of the uterus. Even if the embryos do survive to day-5, biopsies can damage otherwise viable embryos. Unproven accuracy of the technique is yet another concern.

In the article, Dr. Gleicher laid out all these concerns in opposition to the growing use of embryo screening techniques, especially PGS. In an illustration of Dr. Gleicher’s point, the article refers to a CHR patient (who has been featured in the December 2012 issue of CHR UPDATE) who was able to get pregnant and give birth after a non-PGS cycle at CHR, while her previous attempts involving PGS at another center left her empty-handed.

Check out the NYT article here.

 

Category: Uncategorized

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Magda Cartveli, RN!

Magda Cartveli, one of our dedicated clinical coordinators, is now Magda Cartveli, RN. After lots of hard work, she just passed the NCLEX exam. Now that she is a Registered Nurse, Magda was also promoted to the Clinical Supervisor position. We are sure she will excel in her new role!

Congratulations, Magda! Everyone at CHR is proud of you.

Category: Uncategorized

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IVF 101: Sara’s Guide to IVF (Part V)

In my last post, I described the last major step in the IVF process: The Embryo Transfer. What’s next? Well, it’s time for the Two Week Wait.

So congratulations to me. I made it through the weeks of intense medication, doctor visits and overall anxiety of the IVF process. So now what? Is it my time to just sit back and plan for nine months from now with the hopes of becoming a mother? Oh no. The anxiety that I felt everyday through the transfer did not go away, it just shifted. Now that the transfer was done, I was about to embark on the next part of IVF known as the Two Week Wait. (No, I did not invent this phrase.) The Two Week Wait (also known as TWW) is the two-week period in between the transfer and your scheduled pregnancy test. If you’re reading this post, your question may be “How do you handle the TWW and how is this time period different from the other stages of IVF?”

Well for starters, I admit from an emotional standpoint I was nervous, excited etc. I realized, however, that I didn’t have much control over the situation. Up to this point, I did everything I could do to try and get pregnant, but things were now out of my hands. I had diligently taken my medication, consistently did acupuncture and tried to “be in the moment.” But now I had to let nature do its thing and just hope. So the best I could do was to keep busy and pray the time would go quickly. I tried to shift my focus by concentrating on my job and my personal life.

The TWW stage is different than the other parts of IVF because for the first time in weeks, you’re not tied to a schedule (i.e. doctor visits). You get a little relief – a mini vacation. I mean, you’re still taking a gazillion meds but you’re not being poked and prodded like you were during the stimulation period. Now it’s just you, your medication schedule and your thoughts. My advice is to try and not think too much of anything. You might physically feel things and think, yes I’m pregnant or boo hoo I’m not. But the truth is you are on a lot of medications that could be playing tricks on your mind and body, which may result in giving you a potential false/positive feeling for how things are going.

On that note, I know it’s very tempting to take a home pregnancy test. There are a few reasons I do not recommend this. For starters, echoing what I just said above, the basic home pregnancy test could lead to a false positive result – talk about a letdown. These home pregnancy tests check for HCG in your urine, and you could still have some HCG lingering in your body from the HCG trigger shot used before the retrieval. The only real way to confirm the pregnancy is with the blood test performed at the doctor’s office to check your BETA levels.

I admit, I wish that I would have had the experience of taking one of those home tests and feeling that joy and excitement at seeing two pink lines. I mean, I NEVER experienced it! But I promise it’s worth the wait of finding out the proper way and if you are lucky enough to be pregnant, you can always head over to your local pharmacy and pick up a test, pee on that stick, wait the three minutes and see that image you’ve been waiting for.

So that’s it. The conclusion of IVF 101: Sara’s Guide to IVF. From this point on, each of you will have a different and personal experience. After this two week wait, some of you will be pregnant, others, unfortunately, will not. Regardless of how things turn out, know that you made a decision to change your life by committing to creating your family. As I’ve always said, there are many ways to become a parent and you will figure out your own way (whether by IVF, adoption, surrogacy, etc.) Don’t give up hope because even if things don’t go your way this time, there are more chances and opportunities to get it right in the future. Keep up the positivity and I wish you good luck.

Be sure to keep an eye out for my next CHR posts about my infertility journey, including “Top 10 things I wish I knew while battling infertility.” And, of course, stop by my own blog for more stories on infertility.

Stay positive,

Sara

www.laughingattheiword.com

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Opinion 001: June 2014

On National Outcome Reporting of IVF Results

Summary

CHR is seriously concerned about highly misleading information currently communicated to the public by the two national IVF outcome-reporting systems. As there appears a consensus that both are inadequate in their current structures, CHR welcomes the recently announced modifications by the Centers for Disease Control and Prevention (CDC) and the Society for Assisted Reproductive Technology (SART) to their respective systems. However, CHR is not convinced that the proposed changes go far enough to correct current shortcomings, which allow IVF centers to manipulate their outcome data to their benefits by not reporting cycle starts in women with poor pregnancy chances. Though CDC and SART urge the public not to judge centers by their reported outcomes, since different centers treat patient populations with inherently different pregnancy chances, there is really no other good reason for the public to refer to both national outcome reports other than to compare centers in their competency. CDC and SART should, therefore, either cease publication of misleading outcome reports or develop an outcome reporting system that does allow the public fair and accurate comparisons between centers. No reporting is always better than misleading reporting, and intentional misreporting by centers should result in sanctions. National IVF cycle outcome reporting is a good example of how carefully national outcome reporting systems have to be designed before implementation.


“In response to concerns about data quality and comparability,” the U.S. Congress in 1992 mandated national outcome reporting for all medical facilities performing assisted reproductive technology (ART) cycles, which is widely known by the public as in vitro fertilization (IVF), in Fertility Clinic Success Rate and Certification Act (FCSRCA or Public Law 102-493).1 The principal motivation was improved transparency for infertility patients. The FCSRCA mandated that all IVF centers report “success rates” to the Centers for Disease Control and Prevention (CDC) in a standardized manner.1

CDC then publishes the so-called annual ART Success Rates Report, which lists the individual outcomes of all reporting IVF centers. The latest one was published for the year 2012, reporting on 176,274 ART cycles at 456 clinics.2

In parallel, the Society for Assisted Reproductive Technology (SART), a subsidiary organization of the American Society for Reproductive Medicine (ASRM), also publishes an annual IVF Success Rates report, based on voluntary data submission by most U.S. IVF centers.3

These two annual national reports slightly vary in participating centers, content and style, but do represent a large majority of actively practicing IVF centers. Despite the above noted Congressional mandate, a small minority of centers refuses to report. For lack of legal enforcement mechanisms in the FCSRCA, they, nevertheless, practice ART unchallenged, while SART mandates annual reporting as a condition of membership.

Though motivated by “comparability” of outcome reporting to benefit infertility patients,1 CDC and SART recognize the complexities of outcome reporting in all of medicine4 and prominently note in their annual reports that outcomes should not be used for quality comparisons between clinics, since the severity of treated disease/infertility differs between centers. By giving this advice, both organizations acknowledge obvious limitations to their respective reporting systems.

The public, not surprisingly, is confused, being offered two national clinic-specific outcome reports, yet, at the same time, also being advised not to make use of this information. One, therefore, has to ask, why even bother with publishing these reports?

Senator Ron Wyden, the member of Congress most responsible for passage of the FCSRCA in 1992, nevertheless, recently suggested the national ART outcome reporting system to CDC as a valuable example for other areas of medicine.Concerns about the reporting system, however, were recently heightened further when a recent CHR study found that the system communicates misleading information to the public: A small number of IVF centers took advantage of loopholes in the system to artificially inflate their clinical pregnancy and delivery rates by selectively reporting IVF cycle outcome data to CDC and SART. Over a study period of 5 years, they significantly increased market share in comparison to properly reporting centers and, thus, economically benefitted from misleading reporting.6

CDC and SART have recognized these shortcomings in current reporting systems and have announced remedies,7,8  which should make abuses of the system more difficult but are unlikely to stop them completely. Proposed remedies, in addition, are at least two years away from reaching the public. Considering the very obvious impact on the public from misleading reporting,6 one has to wonder why CDC and SART are not taking actions more forcefully.

An improved reporting system should have the specific purpose and ability to allow for fair comparisons between IVF centers. Intentional manipulations should draw professional penalties, including withdrawal of accreditations and/or loss of licenses. Moreover, failure to participate should also have consequences; indeed, participation in a legally mandated outcome reporting system should be a precondition for licensure of IVF centers.

Unless such changes are implemented in a new reporting system, increasing competitiveness of the clinical infertility market will lead to increasing reporting abuses, as recently demonstrated when, using reported national data, a center issued a press release under the heading “ Report Finds (name of center) 2012 IVF Success Rates to be 23 Percent Above National Average for Women under 35”.9 Disregarding current advertising guidelines of SART, a precondition for society membership,10 this press release was blatantly misleading. Such misleading promotional activities, abusing national outcome reporting systems, can be expected to become formal marketing strategies, unless curtailed.

Whatever the area of medical practice, the public does not have the expertise to differentiate true from manipulated outcome reporting. Reporting systems officially sanctioned by authoritative professional and/or government bodies, therefore, become accomplices in misleading the public when publishing potentially misleading reports. They, therefore, should report outcomes accurately or, if currently available statistical means do not allow for accurate reporting, should not report at all.

National IVF outcome reporting serves as an example of how carefully such reporting systems have to be developed to avoid manipulations and abuses. No outcome reporting is always preferable to flawed reporting.


References
1. Centers for Disease Control and Prevention. Assisted Reproductive Technology (ART). http://www.cdc.gov/art/Policy.htm; accessed April 21, 2014

2. Centers for Disease Control and Prevention. What is Assisted reproductive technology? http://www.cdc.gov/art/; accessed April 21, 2014

3. Society for Assisted Reproductive Technology. IVF Success Rates. http://www.sart.org/find_frm.html ; accessed April 21, 2014

4. KPMG Whitepaper. Measuring the value of healthcare Delivery: Cutting through complexity. http://www.kpmg.com/Global/en/IssuesAndInsights/ArticlesPublications/clinical-governance/Document; accessed April 21, 2014

5. Adashi EY, Wyden R. Public reporting of clinical outcomes of assisted reproductive technology programs: implications for other medical and surgical procedures. JAMA 2011;14:306:1135-1136

6. Kushnir VA, Vidali A, Barad DH, Gleicher N. The status of public reporting of clinical outcomes in assisted reproductive technology. Fertil Steril 2013; 100:736-741

7. Ball D, Coddington C, Doody K, Schattman GL, Toner J, Van Voorhis BJ, Williams RS. The playing field is changing… Fertil Steril. 2014 ;101:e29 

8. http://www.sacbee.com/2014/02/18/6166829/report-finds-reproductive-medicine.html ; accessed April 21, 2014

9. Reproductive Medicine Associates of New Jersey. Report find RMANJ’s 2012 Success Rates to be 23 percent above national average for women under age 35. Hyyp://www.rmanj.com.category/press-releases/; accessed April 21, 2014

10. SART. SART Policy for Advertising by ART Programs, effect April 1, 2009. http://www.sart.org/uploadedFiles/Affiliates/SART/Members/Executive_Council/sart-advertising-policy-; accessed April 21, 2014

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CHR Guest Blogger to host infertility event

CHR guest blogger Sara, of Laughing at the I-Word, is hosting a meet and greet infertility support event in New York City on Wednesday, June 25th at 7 p.m.

When it comes to coping with infertility, talking with those who can relate can be a great relief. Regardless of where they are on their journey, anyone who has ever struggled with infertility is encouraged to attend. The event will include food, drinks, and a discussion on “The top 10 things I wish I knew when battling infertility.” Location and event details are below, and you can RSVP by emailing Sara at Sara@laughingattheiword.com.

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OPINIONs Introduction: June 2014

Introducing OPINIONs, a new commentary series from CHR


With this post, CHR is initiating a new series of communication called “OPINIONs: Independent Voices on Reproductive Endocrinology, Medicine and Society.” As the title implies, this series will be mostly dedicated to topics of national importance related to the practice of reproductive endocrinology and infertility, but, on occasion, also address issues of general medical importance.

These “OPINIONs” will reflect CHR’s formal viewpoints on contemporary circumstances and, therefore, may change over time. They will be numbered and dated. To point out the importance of constantly evolving knowledge in medicine, should an older OPINION be updated or replaced, reference will be made to that older opinion. As appropriate, some OPINIONs, like our inaugural piece on national outcome reporting of IVF results, to be published on Monday, June 9, 2014, will be referenced; others will not.

We encourage comments and responses, especially if reflective of different opinions. Comments can be directly posted to each OPINION piece or emailed to ykizawa@thechr.com. We reserve the right to edit responses before posting but will not post edited responses without the authors’ permission. Acceptance of responses is at the full discretion of our editorial division.

Considering the large and rapidly increasing number of visitors to CHR’s website, we expect this new feature to evolve into a strong independent voice, representing patients’ best interests. Stay tuned for this exciting new voice from CHR!

Category: OPINIONs

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IVF 101: Sara’s Guide to IVF (Part IV)

In my last post I described the part of the my IVF cycle known as The Retrieval. This post will pick up from there and describe the next step: Embryo Transfer.

After retrieval, the eggs and sperm start doing their “thing” in the lab and hopefully embryos start developing via fertilization. Developing means the embryo cells are dividing many times to a point where it is nearly ready to implant on the walls of the uterus. This division takes place post-retrieval, typically between days one to two, and then transfer is scheduled for either day three or day five. In my case, I was always scheduled for a day three transfer.

During these few days between retrieval and transfer, my only job was to try to relax and to hope and pray that my eggs would fertilize into healthy embryos that were ready for transfer. Note that not all eggs fertilize and not all fertilize well. Like every stage of IVF, you need to have the right mix of amazing science and luck. So I spent those few days trying to chill, taking my medication and mentally preparing for  the transfer.

My transfer was scheduled in the morning, and I arrived at CHR about thirty minutes before the procedure. This time allowed me to complete the necessary  paperwork, change into that glorious hospital robe, hair cap and booties, and, most importantly, review my embryo status with the embryologist. The embryologist  and I discussed what my little embryos had been up to the past few days. We reviewed how many embryos I had, which ones we would transfer and how many, if any, we would freeze. The embryologist also reviewed the level and grade of my embryos, so I was armed with the information to make decisions about what to do with each embryo. At this time I also spoke with my doctor so I could decide how many embryos to transfer. This is a decision that is unique to each person based on personal health factors such as age, number of attempts of IVF, quality of embryos etc.

Once we reached our decision, it was time to head over to the transfer room. I laid back on the exam table, which is almost like a “Craftmatic” bed, and my legs and feet went up, my back reclined, and I was in “position.” The doctor arrived and the embryologist once again confirmed who I was and the number of embryos I was transferring. Then, just like that, the embryos, which are mixed with a nutrient fluid, were transferred via a catheter into my uterus. The whole procedure was guided through ultrasound so I could actually see my embryos enter my uterus. How cool is that? Luckily, there were no issues and, voila, I was ready to go home with a few good prizes: a few embryos and an ultrasound photo of the big moment! I spent the next two weeks— TWO WHOLE WEEKS – holding onto that photo with hope and worry as I awaited the next stage of the IVF process: the pregnancy test.

Stay tuned for the next part of my IVF story in an upcoming post and don’t forget to stop by my own blog for more stories on infertility.

Stay positive,

Sara

www.laughingattheiword.com

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Dr. Gleicher invited to join PLoS ONE editorial board

CHR’s Medical Director and Chief Scientist Norbert Gleicher, MD has recently been offered a position on the editorial board of PLoS ONE, an online scientific research publication.

Launched in December 2006, PLoS ONE is a peer-reviewed, open-access journal that features original research from all disciplines within science and medicine. The journal has a mission to make “the world’s scientific and medical literature a freely public resource” and encourages community-based dialogue on every published article. One of the largest research journals in the world, PLoS ONE publishes well over 2,000 articles per month.

As a world leader in fertility research, Dr. Gleicher not only has an extensive list of his own published research (some in PLoS ONE), but has served as an editor and board member for a number of medical journals. His unique expertise will surely add an authoritative voice to the dialogue of this ambitious and prestigious journal!

Category: News, Uncategorized

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Dr. Gleicher Discusses Single Embryo Transfer on Wall Street Journal

Dr. Gleicher discusses single embryo transferHow many embryos to transfer in an IVF cycle is an important decision. It has significant implications on the patient’s likelihood of pregnancy, risks of multiple births and other pregnancy complications. CHR has been a vocal advocate for patients’ right to self determination on this issue. We believe that it should be the patient who makes the decision, with full information and disclosure received from their physicians and embryologists.

Unfortunately, however, there has been a push toward uniformly recommending single embryo transfer (SET) in the reproductive endocrinology community. As we have pointed out in many occasions, a balanced approach is needed in order to minimize the risks associated with high-order multiples while maximizing the pregnancy chances for individual patients.

Advocates of this (in our opinion rational) approach is becoming rare, however, as the push toward elective SET has become more popular among colleagues, especially in Europe and Canada. It is then no surprise that The Wall Street Journal quoted Dr. Gleicher in a recent article exploring this issue. Sparked by a recent study published in Fertility and Sterility by a March of Dimes and the Hastings Institute task force in which Dr. Gleicher participated, the article examines the growing multiple birth rate in the U.S., discussing both the health risks of multiple embryo transfers (higher risk of premature births) and the lower chance of pregnancy with SET.

“I don’t think that single embryo transfer is a great option for women with infertility and particularly for older women with infertility or younger women who have low ovarian reserve,” Dr. Gleicher told the Journal, because women with low ovarian reserve may not have enough time left to have two babies consecutively, but could build a family with two children if they ended up having twins from a transfer of more than one embryos.

To learn more about CHR’s approach on patient empowerment surrounding the issue of SET, please visit the IVF and Twins page.

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