GUEST BLOG POST: Consent to Freeze: Reading the IVF Fine Print by Carolyn Savage, author, Inconceivable

Our names will be forever connected with one of the most significant medical errors ever made inside a fertility clinic. In February 2009, through a process referred to as a frozen embryo transfer, another couple's embryos were mistakenly transferred into my body. Eight months later, I gave birth to a baby boy who we relinquished to his genetic parents a few minutes after delivery. Following the pregnancy, it became important to us that this mistake never happen again. Through research and asking questions of fertility specialists, our list of concerns has grown past the obvious need to make sure proper patient safety protocols are in place, to include even graver concerns with regards to how human embryos are handled. Who is making decisions about which embryos are transferred, cryopreserved, and discarded?

We thought we had control regarding how our embryos were handled. Turns out, we were wrong.

As part of the investigation into how the wrong embryos were transferred into me, we requested my medical records. While reviewing the documentation from our first in vitro fertilization in August 2006, we were saddened to learn that three of our embryos were handled in a manner that conflicted with our personal beliefs, which we thought we had clarified when Sean and I signed a Consent to Freeze form provided by our clinic. This form directed the clinic to cryopreserve any unused, viable embryos following my embryo transfer. The morning of my original IVF transfer, we had five viable embryos that had developed to the blastocyst/morula stage. We chose to transfer two. What we didn't know was that our three unused embryos were going to be held out of cryopreservation for two additional days, in an attempt to see if they eventually met the clinic's unique quality standards that determine which embryos are frozen. Sean and I assumed that if they were alive the day of transfer, they would be frozen following our transfer. We had no idea that behind the scenes, in a lab that we had no access to, our three embryos were going to be measured against a standard that had never been explained to us.

Consent to Freeze forms are signed by patients every day inside fertility clinics across the world. Yet embryos that qualify for cryopreservation in one clinic may not qualify for cryopreservation by the standards of another. There is no industry wide standard for grading the quality of human embryos. Clinics determine which grading scales they use and set their own unique criteria to freeze. We have even learned of instances where doctors within the same clinic use different criteria to determine embryonic viability.

The truth is that no embryo grading scale can determine, with certainty, which embryos will turn into healthy babies. High-grade embryos often fail to yield pregnancies and poor grade embryos are capable of producing perfectly healthy babies. Logan Morell, the little boy I gave birth to as a result of the mistaken transfer, was born from an embryo that was given a poor quality grade. We have learned through research that many fertility doctors would have canceled my frozen embryo transfer because Logan's embryo wasn't good enough. Thank goodness our doctor left that decision to us. We believe the choice of whether to transfer or not, whether to freeze or not, belongs to the patient.

Do fertility doctors play God during the IVF process? When they take decisions about the fate of human embryos out of the hands of patients, we believe they do. Sean and I admit we made an incorrect assumption about the meaning of a Consent to Freeze form. We didn't know to ask about our clinic's criteria. We didn't think to give specific instructions to freeze our unused embryos immediately following my transfer regardless of their quality ratings. These are mistakes that we have to live with, and it's tough. All three of those embryos had higher quality ratings than Logan's embryo. We'll never know if they might have become a child.

Sean and I believe decisions regarding medical treatments should always be between a patient and the doctor. But with little regulation and almost no oversight in the fertility industry, it is imperative that patients educate themselves thoroughly about their clinic's procedures. Patients should ask for a copy of their fertility clinic's embryo grading system. In addition, the clinic should provide couples a detailed explanation of the criteria used to determine if an embryo is fit for transfer, or fit for cryopreservation. After reviewing these policies, patients must clearly communicate in writing their desires. For patients to make informed decisions, they should communicate daily with the clinic staff about embryonic development. If a doctor refuses these requests, find a new clinic!

We believe in vitro fertilization is God given technology, just like open heart surgery, chemotherapy, and antibiotics. We are also aware that the science of assisted reproductive medicine poses ethical questions that require serious thought. Many have condemned the medical treatments available to infertile couples because they believe it "interferes with nature" or "circumvents God's role in creation." Sean and I wholeheartedly disagree. IVF has helped us bring our daughter into the world, and we have no doubt that in time, she will positively impact the lives of the people around her. Regardless of one's opinion about assisted reproductive techniques, it is in the best interests of fertility professionals and patients that protocols ensure patient safety; that communications about human embryos are clear and concise; and that there is complete transparency in the process of assisted reproductive techniques.

© 2011 Carolyn Savage, author of Inconceivable: A Medical Mistake, the Baby We Couldn't Keep, and Our Choice to Deliver the Ultimate Gift
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Sean and Carolyn Savage's, story was covered widely when they gave birth to the baby boy in September 2009, including People magazine and on The Today Show. In Inconceivable: A Medical Mistake, the Baby We Couldn't Keep, and Our Choice to Deliver the Ultimate Gift, they are telling the entire story for the very first time. Sean and Carolyn live in Ohio with their two teenage sons and a two-year-old daughter.  For more information, visit http://inconceivablebook.com.

Pregnancy over 50 by Cyma Shapiro

I’m a little enamored of a Wikipedia category called “Pregnancy Over 50.” In it, it provides a historical timetable of women who gave birth over the age of 50. Women like Elizabeth Greenhill, born in 1615, who had 39 children with her husband William Greenhill, and gave birth to her last child (naturally) in 1669 at age 54,with London surgeon Thomas Greenhill. She is the first woman noted in this lengthy list. 

In 1996, Judy Bershak, of Los Angeles, gave birth to her first child at the age of 50. Bershak got married at the age of 44, and after failing to both conceive naturally and adopt, she went through IVF treatment and became pregnant on her first attempt. In 2000, Elizabeth Edwards, 50, wife of the former U.S. Senator John Edwards, gave birth to a son in 2000. And in 2010, Karen Johnston, from England, gave birth to twins at the age of 54 after undergoing IVF in the Czech Republic. All of these women fall under the 50-54 category.

In the 55-59 category, a 57-year-old Indian woman gave birth (with IVF) in Melbourne, in 2010, setting a record to become the oldest mother in Australia. 

In the 60-64 category, Arceli Keh, of California, gave birth to a daughter in 1996, at the age of 63.  In 2010, Bulgarian psychiatrist Krasimira Dimitrova, 62, gave birth to female twins, also using IVF. Dimitrova decided to become pregnant after she was refused the option of adoption because of her age.

In the 65-66 category (why they’d have a category for one year confounds me), in1999,  Harriet Stole, 66, from North London, gave birth to a son, after agreeing to be a surrogate mother for her infertile daughter in-law. One year later, Jennifer Hong, age 65, gave birth to her second child, in Canada. Becoming a mother later in life, she is quoted as saying, "It doesn't matter how old you are. It just matters that I have a family which I love.”

Finally, in the 67-70 category, Wikipedia lists only two women, both of whom accomplished the same achievement in the same year. In 2008, Omkari Panwar gave birth to twins in India via emergency cesarean section at the age of 70. Omkari became pregnant through IVF treatment, which she and her husband pursued in order to produce a male heir. Omkari has two adult daughters and five grandchildren. In response to hearing that she'd possibly broken the record for world's oldest mother, Omkari stated, "If I am the world's oldest mother it means nothing to me. I just want to see my new babies and care for them while I am still able." Also, Rajo Devi Lohan gave birth to a daughter at the age of 70. Lohan's health deteriorated soon after and she claimed she had not been informed of any dangers. Her doctor said, "Even though Rajo's health is deteriorating, at least she will die in peace. She does not have to face the stigma of being barren.” 

In total, nearly 100 women are listed in this Wikipedia article - a mere fraction of the real total throughout the world. In fact, since I’ve interviewed a few of the women listed here, I know that some of the dates and facts are incomplete. Nevertheless, this list remains a “Who’s Who” of pioneers and women from around the world who broke barriers and cultural traditions, simply by having children. (Remember, too, that this group doesn’t count any later-age women who have chosen to adopt/foster/guardian children). While this list is intended to inform and educate, it reads like a List of Champions – world record-holders who must surely have received some medal(s), as they unintentionally topped one another.  I fear not…

What strikes me the most is that my initial reaction to reading this was, “Wow! These women are (too) old!” Silly words for a woman who began her (second) family at age 46, and 48, respectively. Sillier, too, for someone who has worked tirelessly to bring websites and an art gallery show entitled NURTURE: Stories of New Midlife Mothers to this country - projects intended to celebrate and educate the public about the newest chapter in the women’s movement – the new middle age for women and the lives of new older mothers. MotherhoodLater celebrates this very thing; we all know it, because we are living it!

However, the innate biases remain the same. Once taken out of context, I am the culprit, as I’m sure are you!  For this reason, alone, the topic of new older motherhood deserves more conversation and more debate. This increasingly common and popular trend does not seem to be diminishing, and therefore deserves to be out of the closet. And, yet there are hundreds, if not thousands of women who remain fearful of being in this category not just because of potential medical complications, but for the stigma attached to their having made decisions (that were right for them) during their Advanced Maternal Age.  (Wikipedia’s definition of this is: an increase in the age at which women give birth to their first child, [which] is now a widespread, and indeed [a] near universal phenomenon across the OECD countries.)

Footnote: The AMA age in America is 35 and older.

Because of this, many women opt not to move forward in obtaining their goals and fulfilling their desires – that is, to simply be mothers. I do not mean to minimize the intricacies involved here; there are many facets to this complicated situation.

Wikipedia’s debate section concludes with the following: “Pregnancies among older women have been a subject of controversy and debate. Some argue against motherhood late in life on the basis of the health risks involved, or out of concern that an older mother might not be able or around to care for a child as she ages, while others contend that having a child is a fundamental right and that it is commitment to a child's wellbeing, not the parents' ages, that matters.

A survey of attitudes towards pregnancy over age 50 among Australians found that 54.6% believed it was acceptable for a postmenopausal woman to have her own eggs transferred and that 37.9% believed it was acceptable for a postmenopausal women to receive donated ova or embryos.

Governments have sometimes taken actions to regulate or restrict later-in-life childbearing. In the 1990’s, France approved a bill which prohibited postmenopausal pregnancy. (At the time) The French Minister of Health was quoted as saying it was "...immoral as well as dangerous to the health of mother and child." In Italy, the Association of Medical Practitioners and Dentists prevented its members from providing women aged 50 and over with fertility treatments. Britain’s then-Secretary of State for Health, Virginia Bottomley, stated, "Women do not have the right to have a child; the child has a right to a suitable home."  However, in 2005, age restrictions on IVF in the United Kingdom were officially withdrawn. Legal restrictions are only one of the barriers confronting women seeking IVF, as many fertility clinics and hospitals set age limits of their own.”

I do not have any answers, here, nor do I wish to share my personal feelings on the subject. However, I remain convinced that everything in life deserves attention, especially when it reflects an individual’s (truths and) true needs and desires. For this, and for these women, motherhood remains everything…

At A Loss for Words

Recently one of my clients confided in me that she and her husband are trying to have a baby and are suffering from infertility. She just finished yet another attempt at IVF that didn't even yield a single egg worthy of extraction. She is 38 years old. She told me she confided in me because she thought I was an inspiration given all that we went through to get Joey and Lyra.

Problem is, I feel like I can offer no inspiration whatsoever. I refuse to give advice to people on this subject, and I refuse to fall prey to all of the cliches.

I refuse to say "Don't give up," because I gave up.

I refuse to say "Just keep on trying," because I stopped trying. And continuing to try in the face of such monumental odds is devastating to a woman's self-esteem, pocket book and sanity.

I refuse to say "Just relax and it will happen," because that is positively the most un-relaxing comment ever and it used to drive me crazy when people would say that to me. And besides, it doesn't work.

I refuse to say "Adopt and then you'll get pregnant," because despite a few "I know someone" stories and Charlotte's miraculous conception in Sex and the City, this does not happen nearly as often as people think. You never hear about the thousands of parents who do adopt and don't get pregnant.

And I refuse to say, "oh a donor egg / adopted baby / adopted embryo will feel just like your baby," because I didn't believe this when I was going through my infertility and adoption issues. (I believe it now, but when you are in the throes of infertility, this is not a great comfort.)

The only thing I can say for sure is that the right baby finds you at the right time. But somehow I feel this is less than adequate. Have any of you been through this with friends? When you've finally crossed over the great divide from want-to-be parent to an actual parent and you've still got friends on the other side? And what do you say?