Making Plans for Embryos

Although both of their daughters have done remarkably well and neither has any significant physical (or emotional) problems as a result of her low birth weight and severe pre-maturity, Carla and Marc’s daughters have required a host of medical consultations. For a long time the Duffy’s were too busy with the girls to focus much energy on the future of their frozen embryos. But one thing they were certain of: after two harrowing pregnancies, they could not use their frozen embryos to have a third child.

What does a couple do when they realize that they have gone from barrenness to reproductive bounty? They have more embryos than they are prepared to parent. Some couples take what medical ethicist George Annas of Boston University School of Public Health has termed the default solution.

Mental health counselors working with infertile couples suggest that there may be another motivation for leaving the embryos in “storage.” For people who have struggled with infertility and often, with pregnancy losses, having cryopreserved embryos can feel like an “insurance policy.” What if something should happen to one of their children? Years of dealing with loss and uncertainty have conditioned them to be very cautious about closing off any reproductive options or opportunities.

But for the Duffy’s, as well as for countless other couples, “the default solution” was no solution at all. Carla and Marc did not feel that they could feel a sense of closure about their infertility and traumatic pregnancies until they had made a plan for their embryos. It was at that point that they began to investigate what options were available to them. They assumed that there were three: they could donate their embryos for scientific research, they could donate their embryos for adoption or they could discard them. Carla and Marc knew that there was a fourth option: they could have the embryos thawed and transferred to Carla during a time in which they knew she would not conceive. Dr. Steven Bayer of Boston-IVF, who was the Duffy’s physician when they were undergoing IVF, observes that “some couples welcome this option because they feel that it is more ‘natural’ than simply discarding the embryos.” For people who have struggled to do something that so often felt “sci-fi,” this “natural” approach often holds appeal.

“But we wanted our embryos to help someone. We wanted some good to come from them.” That left the Duffy’s with two options -- or so they thought. They could donate them for “embryo adoption” or they could donate them for scientific research. As it turned out, there were serious problems in their choosing either option.

Carla has both a close friend and a close family member who are struggling with infertility and she acknowledges that she thought about donating the embryos to one of them. As an infertile person with close friends who had adopted, Carla had many positive feelings about adoption. How wonderful, it briefly seemed, to have someone close to her “adopt” her embryos. However, like most others who give some thought to embryo adoption, Carla realized that giving her embryos to someone else was fundamentally different from adoption: adoption is a loving solution to a social problem. This, by contrast, would mean bringing children into the world whose fate had been sealed in an embryology lab. It was simply too strange -- the idea that their full biological children would be raised in another family. The fact that that family would be close to them did not make the option any more appealing.

Donating to science, by contrast, offered the Duffy’s the opportunity to use their embryos to help others in a way that they saw as morally and ethically correct. As Catholics, both had gone through a good deal of soul searching before ever embarking upon IVF. Later, when Carla was hospitalized during her first pregnancy, she turned to God for strength and for guidance. She remembers the moment that she received that guidance -— the moment that she felt God was letting her know that her baby would survive and thrive. Deeply grateful for that moment, both Carla and Marc feel that their faith was strengthened by their difficult pregnancies. Both have turned to their faith for guidance in making decisions for their embryos. This time it has been Marc who feels that he received that guidance. “I was in church and the priest said that God wants all of us to act in ways that will help other people. At that moment, I felt that I had the answer I needed: donating the embryos to help reduce disease and suffering is the right thing.”

And that was where the Duffy’s were when Carla made the initial phone calls that proved to be so upsetting. They had struggled to make a good decision, assuming all along that there would be no problem finding a medical program that would welcome their embryos. In fact, the program that had treated the Duffy’s, Boston Regional Center for Reproductive Medicine in Stoneham, closed several years ago. However, there was a time when Boston Regional offered “donation to research” on its consent forms. As it turns out, the woman who told Carla that it was “illegal” to donate embryos for research was referring to a Massachusetts statute that has prompted several area infertility programs to approach embryo research with great caution. Massachusetts statute G.L. c. 112 12J states that “No person shall use any live human fetus whether before or after expulsion from its mother's womb, for scientific, laboratory, research or other kind of experimentation...”

Susan L. Crockin, an attorney specializing in reproductive law and the author of the book, Adoption and Reproductive Technology Law in Massachusetts, explains why this statute has been troubling to infertility programs: it defines a fetus to include an embryo. Attorney Crockin notes that the law was written in 1974, several years before the arrival of in vitro fertilization and the cryopreservation of human embryos and may well be unconstitutionally vague as applied to embryo research. She adds that there are also ways to offer a research option for their patients without being in violation of the statute or, at least, its criminal penalties. A program that wants to offer this option has an institutional review board (IRB) approve its protocol and can also file its protocol with its local DA’s office. If the DA’s office believes the research violates the statute, it can go to court. A program also has the option of going to court to confirm that its research does not violate the statute.

Dr. Vito Cardone of the Fertility Center of New England notes that his center paid close attention to the statute in designing their consent forms for cryopreservation. They have been reluctant to offer “donation for research” as an option to couples. Instead, Dr. Cardone says, “we tell them about research centers that will welcome their embryos, but we explain to them that they will have to take them to the centers themselves.” Dr. Cardone goes on to say that recent news about stem cell research has increased the numbers of calls that he is getting from couples interested in making plans for their embryos.

Although they had originally hoped to offer this option, the Reproductive Science Center in Waltham is another program that has not been able to provide “donation for research” to its couples. Dr. Adele Kauffman, a Reproductive Science Center psychologist observes that this has left couples with choices “that they have not been that happy with.” These choices have, for the most part, been limited to two alternatives: they can attempt pregnancy or they can discard the extra embryos. Neither option is attractive to parents who had to work so hard to create the embryos and who now feel that their family is complete. Dr. Kauffman goes on to say that she feels that many couples would welcome the opportunity to donate to science. She echoes the sentiments of Carla and Marc saying, “People wish that they had the opportunity to do some good.”

According to Dr. Kauffman, the Reproductive Science Center has explored the option of embryo adoption for its couples. At one point the program sent out a letter to several couples who had earlier indicated an interest in donating their embryos to other couples. In the letter, the center psychologists outlined several things that people should think about when considering this option. “We found that very few people wanted to donate their embryos for adoption once they realized the complexities of this decision. Instead, most chose to discard their embryos.”

Blessings

Carla and Marc say that there were several months during which they were able to put plans for their embryos on hold. Then came the cascade of news about stem cell research, with one article after another speaking of the possible medical advances that could come from cryopreserved embryos. Carla reports that these articles rekindled her hope that she and Marc would be able to find a program that would use their embryos wisely. “If the technology is available to help a 14 1/2 ounce baby survive and thrive successfully, then I believed that there was -- or would be -- technology that could use these embryos successfully to assist in the treatment of disease.”

One day several weeks ago, Carla mustered up all her courage and phoned her physician, Dr. Steven Bayer, asking him if he might assist her in finding a scientific purpose for her embryos. To her great relief, Dr. Bayer assured her that he would help her. In fact, he told her timing was excellent: Boston-IVF had recently entered into an agreement with Harvard University to participate in a grant from the Howard Hughes Foundation for stem cell research. This grant would enable patients at Boston-IVF to donate embryos that they did not intend to use for pregnancy to a project that hopes to create human pancreatic islets cells to be used in the treatment of diabetes.

Dr. Jeannine Witmyer, an embryologist, is in charge of Boston-IVF’s cryopreservation program. Dr. Witmyer explains that she is in the process of contacting Boston-IVF patients who have had embryos in storage for over three years. Letters went out to each individual/couple offering three options:

Those patients who are interested in donating for research are asked to phone the program to learn more about the research program. Once the patients call in, they receive consent forms that offer a detailed description of the donation program. Dr. Witmyer explains, “We do it this way because we do not want to pressure our patients in any way. We want to be certain that they have completed their treatment and that they are choosing to donate to research because it is something they want to do.”

Carla Duffy reports that she felt a great load had been lifted from her shoulders once she spoke with Dr. Witmyer. “When I finally found a facility that would take our embryos, I was overwhelmed with emotions. I was especially moved to know that our embryos would be used to help people with diabetes. I believe that everything happens for a reason and maybe this was the reason that we went through eight such difficult years. Maybe our long and emotional, life changing, rollercoaster ride of life and death happened so that we would be blessed not only with two wonderful daughters but also with this opportunity to help others.

When Dr. Witmyer explained the Boston-IVF program to me, I felt that we will finally close this chapter in our lives. Knowing this floods me with emotions -- guilt, frustration, anger, sadness, confusion, joy and at long last, hopefulness.”