Our names will be forever connected with one of the most significant medical errors ever made inside a fertility clinic.  Through a process referred to as a frozen embryo transfer, another couple's embryos were mistakenly transferred to Carolyn in February 2009.  In September 2009 a baby boy was born to us, who we relinquished to his genetic parents within minutes of delivery. Our lives were changed forever.  

Following the birth, we committed to making sure this mistake was never repeated.  Through research and guidance from fertility specialists, our list of concerns grew to the point that silence was not an option.   Our gravest concerns did not relate to the error made at our fertility clinic, but how human embryos are handled through the IVF process on a broader scale.

Do fertility doctors play God with human embryos during IVF?  Who should determine how human embryos are handled during the IVF process?  These questions never entered our mind as we embarked upon IVF treatments in 2006.  We were focused on having another child and were willing to spend the time, money and emotional energy to make this a reality.  The technical processes and practices at clinics were simply not on our radar. As we have peeled away the many complicated layers of the assisted reproductive medicine industry over the past two years, what surfaced bothered us so much that we feel a responsibility to force change.  With our book INCONCEIVABLE, this article and future correspondence and communication, our hope is to arm patients with valuable information and encourage the industry to adopt the highest standards and enforce stiff penalties when those standards are ignored.  If the industry does not police itself, legislative action needs to be taken.

Questioning medical personnel is not easy or comfortable -- but it is necessary.  We were raised to have deference to -- and trust -- these professionals.  We placed ourselves at the mercy of numerous ethical and professional fertility clinics and doctors over a ten year period.   But the best protection for both patients and responsible physicians are standards that allow us to identify negligent industry professions and amend policies and procedures that don't work.  Good standards challenge everyone in the industry to develop a best practices approach.

Upon pursuing IVF, we made a commitment to give every viable embryo we created an opportunity at life.  By taking this approach, we were comfortable with our moral position despite our Church's teachings regarding IVF.  So we signed a consent to freeze, confirming with a clinic that any spare embryos not transferred immediately would be cryopreserved for  later use.  There seems to be no ambiguity in this signed request.

Consent to freeze forms are signed by many couples every day inside clinics all across the world.  However, depending on the clinic and the physician, embryos which may be placed in cryopreservation in one clinic may be discarded in a different clinic; all is subject to a doctor's qualitative judgment of viability. We believe that under these circumstances, a doctor is stepping in and playing God by deciding in advance through a grading system which embryos could result in a live birth and which have no human potential.  Science is not yet able to determine with any degree of certainty which category an embryo may fall.  There is an embryo grading system in place, but that seems quite flawed.  The embryo that resulted in the birth of a healthy baby boy to us came from an embryo which received a poor grade.  Apparently this poor grade embryo would not have been transferred at numerous other clinics. 

Transparency is crucial to protecting a patient's rights and a physician's liability. Doctors should be required to inform the patient on the embryo development process. Patients need to provide their physicians with strict instructions on how their embryos are to be handled.  A consent to freeze should not leave the physician with any choice but to freeze all viable embryos.  The limited oversight from within the industry coupled with lax outside monitoring leaves policies and procedures up to individual clinics and even the potential for variances within the same clinic.  The big loser in this "wild west" approach is the patient. 

Although regulation will help, there is no substitution for patients being armed with information and questions as they pursue IVF.  Patients are their own best advocates and we recommend the following course of action.  Ask the clinic what they do with embryos which are created but not transferred.  Does the clinic provide you regular updates on the development of each embryo?  Does the consent to freeze you sign guarantee that every viable embryo not transferred will be preserved for future transfer attempts?

Once in treatment, keep records on the development of each embryo to prevent any discarding of healthy embryos.  Reiterate your intention to give each viable embryo a chance at life so your physician, and those tracking the embryo development in the lab, do not forget your objective.

There are so many fine and ethical clinics and physicians in the assisted reproductive technology sphere who help families realize their dream of having children.  This industry is critical for infertile couples.  Our daughter is living proof of this amazing technology -- what we believe is God-given technology.  However, there are critical problems with the industry, and it is our job as patients to effect change and advocate for the safe and ethical handling of our embryos.  If patients are active participants during each step of the process, they can make sure their embryos are dealt with in a manner that is consistent with their individual moral compass.  IVF, medical ethics, and family values do not have to be at odds.