We’ve Come a Long Way, Baby(ies)!
Today's Christian Doctor - Fall 2015 After lots of prayer and planning, the National Embryo Donation Center (NEDC) opened its doors in 2003 with a vision to become a leader in embryo donation and embryo adoption. Now, just 12 years later, they are celebrating the momentous arrival of their 500th baby and the NEDC is
Today's Christian Doctor - Fall 2015
After lots of prayer and planning, the National Embryo Donation Center (NEDC) opened its doors in 2003 with a vision to become a leader in embryo donation and embryo adoption. Now, just 12 years later, they are celebrating the momentous arrival of their 500th baby and the NEDC is the leading comprehensive non-profit embryo donation program in the U.S., with more pregnancies through embryo adoption than any other like-minded program.
And it all started with one tiny baby. Actually, two tiny babies. A set of twins.
“It seems like both yesterday and a lifetime ago that our lives changed for the better when our twins were born,” stated Kim Lewis, mother to the first babies born through the NEDC and wife to Dr. Adam Lewis, an urgent care physician in Kingsport, Tennessee. “Time passes in the blink of an eye, yet it is almost hard to remember life without them.” The twins, Katie and Sam, turned 10 in March 2015.
The fall 2005 issue of Today’s Christian Doctor included a special report entitled “A Fragile Gift,” which detailed the short but effective ministry of the recently established NEDC in Knoxville, Tennessee. The NEDC was created with a dual purpose: to protect the lives and dignity of frozen human embryos that would not be used by their genetic parents and to assist other infertile couples in having the family that they have longed for via donated embryos.
In that article, Kim, who had recently given birth to the twins, talked about her struggle with infertility, “I was told I had premature ovarian failure, and that I would never have children unless I went through IVF cycle with an egg donor. Of course, we were devastated. I mean, our dream since we’d met had been to have a big family. After several years of praying, hoping, and nearly giving up, we heard about embryo adoption. It was perfect for us in that it combined the joy of adoption and the wonder of being able to experience pregnancy.”
It Was a Vision
“It was our CEO Dr. David Stevens’ idea,” stated CMDA Vice President for Communications Margie Shealy. “He felt like there needed to be ‘a high quality, scientifically and ethically sound way to help ensure that none of these invaluable human beings were discarded or sacrificed for research.’” That vision in 1999 led to what is today a bustling, freestanding embryo donation/adoption (ED/EA) clinic that is an anomaly among other non-profit ED/EA organizations. The NEDC is a comprehensive program handling all the medical, legal and social/emotional aspects of ED/EA in one location.
Before the first embryo transfer could be performed or the first baby born, a lot of work, planning and prayer needed to be done. Dr. Stevens had the vision but needed a like-minded, compassionate physician who specialized in reproductive endocrinology and infertility. He found CMDA member Jeffrey Keenan, MD, who had more than 20 years’ experience in obstetrics, gynecology, reproductive endocrinology and infertility. Reflecting back on Dr. Stevens’ vision and the chain of events that occurred to make it happen, Dr. Keenan said, “God really put all the people and pieces together to form the NEDC. God made it happen; I couldn’t have done this myself.”
That chain of events had brought him to what was then Baptist Women’s Hospital in West Knoxville, as the hospital had recently approached him about relocating his practice, The Southeastern Fertility Center, there. CEO of Baptist Health System of East Tennessee (BHSET) Dale Collins immediately embraced and supported the NEDC concept by providing office and laboratory space along with promotional and administrative support to the organization.
Embryologist Carol Sommerfelt, MS, ELD, stated, “When I became aware that Dr. Keenan and CMDA were setting up an embryo adoption center at the new Baptist Hospital for Women in Knoxville, I was intrigued and felt ‘called’ to apply for the embryologist position,” said Sommerfelt. “It was like God placed this in front of me and tugged at my ‘heart strings’ to become involved in a program to help ‘rescue’ these frozen embryos that I, as an embryologist for over 15 years, had contributed to their existence.” Sommerfelt was thrilled to work for an organization that held the same life-honoring beliefs that she did. Bethany Christian Services (BCS), led locally by Knoxville Director Nancy Lesslie, rounded out this divinely-directed group by contributing their adoption and social work expertise. Dr. Stevens served as the first board chairman, as well.
Spreading the Good News
The NEDC officially opened its doors in May 2003 and had approximately 50 sets of embryos by mid-2004. Word started spreading to fertility clinics and donated embryos began coming in from the Mayo Clinic, the University of Connecticut and other well-known clinics across the U.S., but more needed to be done. Through the end of 2005, the NEDC had just over 100 sets of donated embryos housed in their storage tanks and 18 babies born. Today, nearly 1,400 sets have been donated and more than 500 babies born. In order to protect all embryos and assist those who wish to donate for reproduction rather than destroy them, the NEDC has no minimum on the number that can be donated (as few as one) or their condition (poor embryo quality, possible genetic abnormalities, etc.). The largest set donated thus far contained 35 embryos.
In 2002, Senator Arlen Specter (D-PA) proposed that federal grant funds be appropriated to “launch a public awareness campaign to inform Americans about the existence of spare embryos and options for couples to adopt an embryo or embryos in order to bear children,” which created the Embryo Donation and/or Adoption Public Awareness Campaign housed under the Department of Health and Human Services.
In 2004, the newly formed four-agency collaboration applied for a federal grant and received $304,299 in funding. Since that time, the NEDC has been awarded nearly $4 million in grants, funding that has allowed them to visit, either in person or through live televised presentations, nearly all of the 486 fertility clinics in the United States. Embryos have been donated from all 50 states and patients have traveled to Knoxville from 48 states for their embryo transfers.
One of the NEDC grant-funded awareness projects included an online poll to measure the level of ED/EA awareness, conducted in cooperation with Harris Interactive, Inc. in 2011. Previous surveys had been conducted in 2002 (by RESOLVE) and in 2007 and 2009 (by NEDC). Most of the survey questions were identical for the 2007, 2009, and 2011 polls for accurate comparison. The poll revealed that awareness of ED/EA by either term had stayed around 50 percent for the general public and 70 percent within the infertility community since 2009. The increase in awareness came from those who still had embryos in storage, with 98 percent being aware of either term. Additionally, more respondents had received information on ED/EA from a healthcare professional rather than from the media. This trending could be a direct correlation to ED/EA grant-related outreach efforts.
In an effort to provide nationwide education on ED/EA, the NEDC held a conference in 2008 in Arlington, Virginia called “Emerging Issues in Embryo Donation and Adoption.” In addition, the National Embryo Donation Academy (NEDA) was developed online with a self-paced learning module focusing on five ED/EA areas of study including nursing, medicine, law, social work and bio-analysis. The classes offer Continuing Education Units (CEUs) for professionals free of charge. Furthermore, NEDA faculty members presented their professional curricula at lecture dinners in 2011 and 2012 during the American Society of Reproductive Medicine (ASRM) conferences.
The NEDC also used grant funds to launch programs such as educational videos and podcasts, traditional magazine advertising in infertility consumer and industry-related magazines and adoption magazines, research publications, poster and conference presentations, a counseling hotline staffed by a social worker, embryo donor and recipient blogs, an ED/EA informational clearinghouse website, an adoption agency-focused ED/EA education website, secure online embryo donor and recipient applications, etc.
The efforts of the grant-funded programs over the years have had a noticeable impact on the awareness of ED/EA and the success of the NEDC. According to Sommerfelt, “When we first started, we performed donor embryo transfers cycles three times a year. We changed that to six times a year in 2006; we went from performing 30 to 40 transfers annually, to more than 120 transfers annually.”
Today the NEDC has nearly reached the maximum number of patients it can see annually and is actively searching for an affiliate like-minded clinic, preferably in the Northeast, Midwest or West Coast, to expand the growing ministry of the NEDC.
Lives Waiting to be Lived
According to the Center for Disease Control (CDC), one in seven couples in the United States now suffer with infertility. This number has been steadily increasing while the growth of assisted reproductive technology (ART), and the increasing number of frozen embryos grows along with it.
“Our vision is that all frozen embryos would be used in attempts to create an ongoing pregnancy,” said Dr. Keenan. “In addition, we would like to see the huge excess of embryo cryopreservation in this country halted, and there are now excellent options for it utilizing oocyte (egg) vitrification (flash freezing).”
Egg freezing has become increasingly popular in women’s infertility circles and is now being offered as a job benefit perk with some big businesses that depend on female employees to keep the corporate wheels turning and profits churning. What started as a way to protect the certain loss of fertility in female cancer patients has evolved into informational cocktail parties promoting this usually unnecessary and costly procedure to delay motherhood. But, for some, it is an answer to prayer. For women who are aware that their egg supply is starting to decrease (as shown by a simple test for ovarian reserve), egg freezing for future IVF cycles reduces the number of embryos created per cycle because only a few eggs are thawed and fertilized per use while the rest remain frozen. Roughly, 10 frozen eggs will result in four to six embryos which equal two to three attempts at pregnancy with two embryos each.
As the NEDC’s embryologist, Sommerfelt has the first contact with these frozen lives after they are adopted. “My greatest joy is to hear about the happiness these donor-embryo-conceived children have brought their parents, many of whom came to the NEDC from across the U.S. and Canada. Receiving birth announcements, pictures, or actually meeting and holding the babies is my greatest reward for helping these couples.”
The Law and What’s in a Name
Embryo adoption is neither legally nor technically an adoption as that refers to the placement of a child after birth, but, to the many families that have been created through ED/EA, it is emotionally correct. Embryos are still considered property in all states and fall under property law versus adoption law. Though not ideal, it is less complicated and less expensive than adoption law and usually does not require an attorney. The laws surrounding the donating and receiving of human embryos for reproduction has not changed significantly over the last 12 years. While a few states have passed legislation on one or two particular areas of the process, there has not been a radical change overall.
Earlier this year, mainstream and social media started paying more attention to this life-honoring family-building option as the NEDC was mentioned on Facebook in a post from one of its donors. Angel Watts was discouraged because the six embryos that she and her husband Jeff donated to the center in May 2013 had not been selected by a recipient. She had a list of requirements that the recipient couple had to meet including being under the age of 35, having a strong Christian marriage, being financially secure, being willing to take all six embryos and potentially raise six children, being in an open communication relationship so that the children will know their siblings, having roots in Tennessee and being within a five-hour drive of Nashville. Amazingly, she found her couple within three weeks. Even more surprising is the ongoing media interest this generated which, in turn, has significantly increased inquiries from those wanting to donate and those submitting online recipient applications.
Due to the media frenzy created by the Facebook post, the NEDC received inquiries or was interviewed by CNN.com, New York Times, Discovery Channel and Time Magazine, as well as numerous local and regional media outlets.
Building a Family
“From the beginning, I was thankful that embryo adoption gave me the chance to carry life inside me, to hold my babies in my arms, and to watch them grow—all things that I had struggled to accept would never happen after my diagnosis,” Kim Lewis recently reflected. “Now, 10 years later, I’m still thankful for those things. I’m thankful not just that I was able to have children, but that I was able to have these children. In the time we spent waiting and praying for a child, it was hard at times not to ask God ‘why?’ The answer is abundantly clear now when I look at my son and daughter. Through donors who chose to give them a chance at life and the NEDC that brought us together, God gave us the children He had meant for us all along.”
As for the Lewis twins, Sam is an avid reader, loves to play video games and write his own comics. Katie enjoys running 5ks, playing basketball and horseback riding.
“I would have never dreamed 12 years ago that we would have been as successful as we are today,” reflects Sommerfelt. “However, as I often told Dr. Keenan in the beginning when things weren’t as successful as we had hoped, we had to have faith that God will provide as no one said it would be easy.” She continues by saying, “Today, the increased numbers of those donating and adopting embryos seems to flood in to us through our website from couples who have learned about us from numerous different sources.”
Sommerfelt reflected, “When I have time to contemplate my time with the NEDC, I feel honored to have helped to bring over 500 babies into the world!”
Dr. Keenan and his wife Sandy were recently honored by CMDA with the 2015 President’s Heritage Award which is given to individuals whose lives and work support the mission of CMDA. Sandy, a registered nurse, assists her husband during the NEDC’s six, week-long donor embryo transfer cycles annually. Upon receiving the award Dr. Keenan replied, “(It’s been) quite a lot of work, but the number of blessings that have resulted are incalculable.”
What You Can Do
- Educate yourself. Visit www.embryodonation.org.
- Pray. We encourage you to pray for our ministry. CMDA’s staff members pray for our efforts each time we go through a transfer cycle, and we would love for you to join them in lifting us up before our Heavenly Father.
- Become an affiliate clinic. Do you specialize in infertility or embryology or know a physician or embryologist who does and would be interested in helping to expand the work of the NEDC? Contact NEDC Grant/Finance Manager Dr. Lara Collins at firstname.lastname@example.org.
- Educate your patients. Contact the NEDC for brochures and other educational materials for your patients and staff. We can also arrange a live, skype-type presentation. Contact Dr. Lara Collins at email@example.com.