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When science comes home
By Annie Cheney, My Generation, January-February, 2002

After undergoing infertility treatments, couples face an agonizing choice: what to do with the remaining embryos.

When Lana Rico* gave birth to her baby girl at age 51, it was the end of a long and harrowing journey for her and her husband, Tony. In their eight years of marriage, they had spent close to $100,000 on infertility treatments. Now Lana and Tony finally had what they’d always wanted – a healthy, beautiful baby. They named her Sara. But the anguish that marked their quest to have a child lingered as they faced another challenge: what to do with Sara’s 11 potential brothers and sisters, the embryos left over from Lana’s in-vitro fertilization treatments. Those embryos were sitting, frozen, in a tank of liquid nitrogen at the fertility clinic.


The ice of life: Canisters store frozen embryos.

Frozen embryos, which are microscopic clusters of cells (including stem cells), have caused heated political debate. Americans, including President Bush, have only recently begun to ponder the ethical questions raised by the use of stem cells in medical research.

But for years, infertile couples have been grappling with a much more personal and equally complex set of issues: what to do with their frozen embryos once they no longer can, or want, to conceive.

Unforeseen consequences
Many couples are unprepared for the feelings they experience after they have children when there are extra embryos in the picture. Lana and Tony had originally agreed to destroy their unused embryos if they completed their family. “But, suddenly, after Sara was born, it was like those embryos were part of our family,” Lana explains. “They were part of Sara.” When it came time to tell the clinic what she wanted to do with them, Lana couldn’t bring herself to have them discarded. “It was too painful,” she says. “We had tried through hell and high water to have them.” And so they put the decision off.

It’s been two and a half years since Sara was born, and the Ricos’ embryos remain frozen. Tony says he’s ready to let them go now. “I feel we’ve got what we wanted…why keep them hanging on?” he says. “Let’s close the books.” But Lana is still haunted by the idea that they would be destroying their potential children. After much discussion, the Ricos have decided to leave their embryos in the tank for another two and a half years – until they turn five years old – when Lana believes that their potential for life will have diminished. There’s no scientific proof that frozen embryos become less vigorous over time, but Lana still maintains she’d rather let the embryos “run out” on their own.

“Ultimately,” she says, “I’m not having to make a decision about their future. It’s being made for me.”

According to Dr. Alan Copperman, director of infertility at Mt. Sinai Hospital in New York City, Lana’s reluctance to make a decision is not unusual. In part, it explains why left over embryos are piling up in fertility centers around the country, some belonging to couples who have simply disappeared. Experts estimate that there are tens of thousands of frozen embryos In the U.S., many belonging to couples now in their late 40s and 50s, who are far removed from the time when they froze them.

Potential life, potential lawsuit
Each embryo is a tiny fertilized egg, created during fertility procedures such as in-vitro fertilization, when doctors combine a woman’s egg with sperm in a Petri dish. As many as 20 embryos may be produced in each in-vitro cycle. Depending on a woman’s age and condition, doctors will transfer anywhere from two to 12 into her uterus.

Most couples choose to freeze the extra embryos as a back-up plan, because only 20 to 50 percent of transfers of fresh (not frozen) embryos result in pregnancies. Frozen embryo transfers are typically less successful (only 10 to 25 percent result in pregnancies), but cost around $3,000 – roughly one-third of the cost of using fresh embryos. As most women require an average of two in-vitro treatments, which aren’t covered under most insurance plans, those embryos represent a great deal of money and painstaking effort.

Frozen embryos are no bigger that the period at the end of this sentence, and almost everything about them suggests that they aren’t alive. They’re stored in laboratories, inside canisters the size of small beer kegs. The canisters are filled with liquid nitrogen to keep the embryos frozen indefinitely at minus 198 F. But put a frozen embryo under a microscope and you’ll see the tiny cluster of cells that, under the right conditions, holds the potential for human life. That potential is a source of great encouragement for infertile couples – even those who have successfully completed their families.

“The embryos represent a ray of hope,” Copperman says, which is why man y couples are reluctant to make a decision about their future. “Giving permission to discard them is not something they find easy to do.” In the meantime, they leave their embryos inside the cold canisters in fertility centers around the country. Copperman estimates that his office has more than a hundred of them, some belonging to patients he hasn’t seen in as many as 12 years.

For Copperman and other infertility doctors, these forgotten embryos represent a legal nightmare. “The same people who have not come forward in the last decade to tell us what to do with their embryos would sue us for destruction of their property if we destroyed them,” says Copperman. In recent years, his center has started charging couples a yearly fee of $1,000 to store their embryos. Other clinics have also taken this tactic; Dr. Rifaat Salem, who runs the Pacific Reproductive Centers in Torrance and Irvine, California, sent all his patients who were storing embryos last year bills for $650. “Everybody has started waking up now,” says Salem.

But a financial penalty is not always enough to spur couples into making a decision. Some, like Tony and Lana, decided to simply keep paying the bill each year. Others ignore the invoices; Copperman’s clinic has resorted to using a collection agency. “If the decision about what to do with the embryos were easy,” he says wearily, “these couples would’ve made it years ago.”

Difficult Choices
Copperman and other infertility doctors have even gone so far as to hire therapists to counsel couples about their frozen embryos. But still, deciding the fate of these microscopic potential human beings is not easy, since the few options available have serious emotional, moral and even legal ramifications.

To avoid making the conscious decision to destroy or relinquish their embryos, says Salem, many couples decide to give them a shot at life by undergoing one final round of in-vitro fertilization – even if they don’t necessarily want any more children or they’re long past traditional child-bearing age. One couple is Joan and Wayne Smith from Clarksville, Maryland. In 1997, when Joan was 54 years old, the Smiths had a son, Jake, through in-vitro fertilization using donor eggs. They were left with five frozen embryos. When Jake was born, Joan was already a grandmother and had a 34-year-old son from a previous marriage, and Wayne had two grown daughters, but they both agreed to try for yet another child to give Jake a sibling closer to his age.

 
Going for broke: At age 56, Joan Smith decided to use the embryos she and Wayne had frozen. Twins resulted.

3-year-old twins Jon (rubbing nose) and Joe Smith (front), as well as their 4-year-old brother Jake (background)

“We knew that we could pass away before Jake turned thirty and then he might not have a family, so we thought we should have another child,” says Joan. The Smiths got more than they bargained for when they transferred three of their leftover embryos and Joan became pregnant with twins. Joe and Jon were born in 1998 when Joan was 56 years old. “I think of having three teenagers at the age of seventy,” Joan says laughing, “and then I think I need to have my head examined.”

Most couples who don’t want additional children eventually decide to destroy their embryos. The procedure is a lot less violent than it sounds, Copperman emphasizes. “It’s not like we line them up and shoot them,” he says, his face serious.

Embryologists simply remove the embryos from the tank and within minutes, the microscopic cells begin to fragment and decompose. It’s an invisible process, but it holds profound emotional significance for a great number of couples. Some attend the procedure and hold makeshift funerals. One couple took their thawed embryos home from the Helix Center for Assisted Reproductive Technologies in Baltimore, Maryland, to give them a proper burial.

As a third option, a very small percentage of people donate their embryos to science. These are mostly earmarked for stem-cell research, which scientists say could hold the key to cures for many diseases such as diabetes and Alzheimer’s. Donation is often a comforting option because couples fell that their embryos are being used for a good cause. But, taking this route became more difficult last August, after President Bush decided to withhold federal funding for any studies using new stem cells. Couples can still donate their embryos to labs receiving private funding, but there are only a handful around the country (see “Stem Cells, Ethics and the Law,” page 34).

Finding solace in adoption
Some people, particularly those with strong religious convictions, believe that frozen embryos are human lives, so donating to science is not an option (since scientists must destroy the fertilized eggs in order to extract stem cells from them). For these couples, even holding a funeral or burying their embryos wouldn’t ease the burden of feeling responsible for the death of their own children.

That was the case for Miriam Vigil, 43, and her husband, Ted, 38, from Torrance, California. In 1997, the Vigils took out a $10,000 loan to pay for the in-vitro fertilization treatments that gave them their twin daughters, born in 1998. Along the way, they froze five embryos. The couple, like many undergoing infertility treatments, were so anxious to become pregnant that they gave little thought to what they would do with the unused embryos. They forgot the embryos even existed until they received a storage bill for $650 a year after their twins were born.

“My life was complete,” Miriam says, “and then all of a sudden my emotions started coming back. I started to get so sad. I started feeling torn.” The Vigils were already under a great financial strain because of their loan payments, and they didn’t feel that they could afford to have any more children. Still, neither of them was comfortable with the idea of destroying their frozen embryos. After much prayer, they decided to put their embryos up for adoption.

Embryo adoption is still a relatively rare option and is not offered at most fertility clinics. But some centers – like the Pacific Reproductive Center where Miriam had her treatment and where she and her husband stored their embryos – do provide it. All the Vigils needed to do was sign a form agreeing to release their embryos anonymously to another couple selected by the clinic director. At first, Miriam says, she was reluctant to go through with it.

“I felt like the embryos were part of me and my husband,” she says sadly. “That they were my children. But we really didn’t have any other option.” When the Vigils heard there might be an interested couple, Miriam knew it was the right thing to do. But that didn’t make it an easy choice.

As she and Ted drove home from the clinic, after signing away their embryos, “I felt like I had let a little piece of my life go,” she says, her voice breaking. “The embryos had our characteristics. They could look like my daughters. And I thought, I’ll never know where they’re going to be.”

To complicate matters, many medical and legal experts question whether embryo adoption is really advisable, as it’s a very new concept and involves several legal risks. Melissa Brisman, a reproductive lawyer in New Jersey who counsels couples undergoing infertility treatments, says even though they are required to sign consent forms relinquishing control of their embryos, couples who decide to donate them are entering legally uncharted territory.

“People think of it as being akin to adoption,” she says, “but really it’s not. With a regular adoption, once the birth mother’s and father’s rights are legally terminated, the birth mother can’t come back and say I want the baby. But there aren’t any laws out there for embryo adoptions.” That means couples who adopt embryos could be blindsided by a lawsuit if the donor parents change their minds years later. Miriam says she often wonders what would happen if she recognized a child resulting from her embryos on the street. “It makes me want to cry,” she confides. “But I don’t think I would pursue a relationship unless it was really important to my husband.”

Microscopic time bombs
While it can be wrenching for couples to destroy their embryos or put them up for adoption, letting them linger in storage can have equally devastating consequences in cases where one partner dies or a couple divorces. Most fertility clinics require couples to sign consent forms before freezing their embryos, but they often do not detail what will be done with them in the event of death or divorce. As James Katz, a constitutional litigation lawyer in New Jersey points out, when couples sign these forms, “they often can’t imagine at the time that a year down the road there could be problems. My experience is that people suffering from reproductive problems will do anything and sign anything to have success.”

There can even be unforeseen difficulties for couples who read their forms carefully. Ruth Miller, 45, a former actress who .lives in Ohio, remembers her surprise when she and her husband, Jim, discussed their consent form. “I was extremely hurt when Jim said that in the event of our divorce he’d want our embryos thawed and destroyed,” she reveals. “I said, ‘Listen, these eggs are all I have and I’m getting near the end of my supply.’ It got really volatile. But in the end, I had to acquiesce.

Ruth and her husband ended up using their embryos, and they’re still married, but other couples haven’t been as lucky. Embryo custody battles have been fought in the state supreme courts in Tennessee, New York, Massachusetts and New Jersey. Katz recently represented a New Jersey woman who froze seven embryos with her husband. The couple signed a form that was extremely ambiguous about what would happen to the embryos if they divorced. When the marriage ended, her husband insisted that she had orally agreed that they could be used for reproductive purposes, including being implanted in his future wife or another couple seeking adoption. But she refused to release the embryos and a lawsuit ensued.

The problem, says Katz, is that issues involving personal decisions – like becoming a parent- are not necessarily subject to binding contractual law. Even if a couple agrees that in case of divorce one partner will retain the right to use the frozen embryos, it’s unlikely that this agreement would be enforced. Hat was the decision reaffirmed by the New Jersey Supreme Court in this particular case.

In other words, it’s doubtful that any court would uphold a contract that could require a person to become a parent against his or her will. A few states have already addressed this issue, but it’s unclear if courts would make exceptions for people whom the embryos offered the only chance of having a child.

Holding on to youth
Despite the potential legal complications and costly storage bills, some couples confess that keeping their leftover embryos perpetually frozen is an attempt to postpone the passage of time, to keep at least some part of themselves – some piece of their fertile past – alive. Trudy Ambler, 46, and her husband, Mike, 41, from Santa Maria, California, have paid close to $2,000 to store their embryos that they froze in 1999. They spent five years under-going five exhausting in-vitro cycles before Trudy finally became pregnant. Since their daughter, Mikayla Marie, was born in 2000, the Amblers have struggled to make a decision about their embryos.

“They’re there and I know that they’re there,” Trudy says. “But to get rid of them is like saying I’ll never have another child.”


An only child? Trudy and Mike Ambler had Mikayla in 2000, but can’t let go of their three remaining embryos.

The Amblers have considered using their embryos for another cycle of in-vitro fertilization, but they haven’t taken any action yet. Trudy, who has an adult son and daughter from a previous marriage, is reluctant to undergo the physically grueling procedure again. What’s more, she says, she’s learning just how taxing it can be as an older parent. “I’m in a play group with women who are younger than me and I look at them and wonder how I ever did it, even when I was their age,” she says. The Amblers have discussed donating their embryos to science (neither feels comfortable donating them to another couple), but so far, they haven’t agreed on a resolution. “It takes a lot of though,” Trudy says.

Meanwhile, Mikayla is approaching her second birthday and next year’s storage bill looms on the horizon.

Stem cell Ethics and the law

Frozen embryos are at the core of the stem-cell debate that started in 1998, when scientists discovered that stem cells could be isolated from embryos. Stem cells are the building blocks for all human tissue and promise to be invaluable in developing treatments for diseases such as Parkinson’s, Alzheimer’s, and diabetes. But because research involves destroying the embryos, it has fueled an impassioned response from pro-life groups who believe their embryos are human lives.

President Bush’s decision to allow federal funding for research on already existing stem-cell colonies – but not for the destruction of new embryos – didn’t satisfy many scientists, who argued that existing cells are inadequate. To address this, a Senate provision may give the President the discretion to fund research on new groups of stem cells.

While donating frozen embryos for privately funded stem-cell research remains controversial, it is still legal. However, very few couples exercise this option. Many fertility centers don’t even mention this possibility. In 12 years, Dr. Rifaat Salem of the Pacific Reproductive Center in California hasn’t had one couple request to donate their embryos to science.

Couple who are comfortable with donating their remaining frozen embryos for stem-cell research should discuss the option with their doctor, as some centers have relationships with privately funded laboratories.


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*Some names of family members have been changed at their request.

 



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