From the Archives: Fall 2008 issue of Lupus Now
The many ways people with lupus complete their families
by Lisa Tillman
Ever since she was a little girl, Cathie Boron wanted children. Diagnosed with lupus the week before her 1998 wedding, Boron worried that her dreams for a big family would never come true. "It was devastating. I told my fiancé, Rick, if he didn't want to go through with the wedding, that would be fine. And he just kind of laughed at me."
The wedding went on as scheduled, and Boron, 37, of Suwanee, GA, spent her first six months as a newlywed trying to get well. A combination of the steroid prednisone, the antimalarial Plaquenil®, and the blood thinner Coumadin® finally brought her lupus symptoms under control. Once she was feeling better, she asked her rheumatologist if the medications she was taking might impact her ability to have a child. She was also worried the drugs that helped manage her lupus might harm a developing baby.
Boron did exactly what experts recommend. She spoke to her doctor before she tried getting pregnant.
Talking It Over
"It's very important for a woman with lupus to talk to her rheumatologist and a high-risk obstetrician to make sure that everyone has a plan in mind for what's going to happen once she gets pregnant," says Marybeth Gerrity, Ph.D., MBA, executive director of the Oncofertility Consortium at Northwestern University Hospital in Chicago.
Boron's doctor didn't want her to get pregnant while taking Coumadin, because the drug could harm the fetus. He switched her to Lovenox®, an injectable blood thinner that's safe during pregnancy.
Robert G. Lahita, M.D., Ph.D., chairman of medicine at Newark Beth Israel Medical Center, tells women with lupus that certain lupus medications, such as Cytoxan® and methotrexate, can't be taken during pregnancy. "That's where the art of medicine comes in. You have to tailor the medications to fit the case. It can be done."
It took Boron and her husband two years to conceive, but they were thrilled when daughter Emersen was born in 2002. Younger sister Taylor followed in 2005.
Like Boron, many women with lupus will be able to conceive and carry a healthy pregnancy to term. "Statistics show that most women with lupus will not have a problem with fertility," says Megan Clowse, M.D., assistant professor of medicine and director of both the Lupus Clinic and the Autoimmunity and Pregnancy Clinic at Duke University. But people whose fertility has been compromised by their lupus treatment do have options.
Sperm And Egg Banking
The good news for men with lupus isn’t “news” at all. Banking sperm today is a very reliable process in which the sperm samples are frozen and stored for when and if the man needs them. It is a welcome option for Bryan Cennami, 22, of Lynn, MA, who was diagnosed with lupus in April 2007. Newly engaged, Cennami has been eager to learn about his options. “I definitely want children,” he says.
Cennami’s doctors believe that his medication regimen, which includes the immunosuppressive CellCept® and the steroid prednisone, could affect his fertility and that his future wife might need artificial insemination.
Gerrity encourages men like Cennami to have their sperm frozen and cryogenically preserved for future use. “Sperm banking is very straightforward and safe. It’s been around for 40 years.”
Clowse agrees. “It’s much cheaper than anything we do for women, and it’s easy.” She advises men with lupus that freezing multiple sperm samples is an effective strategy for preserving their fertility. The treatment then becomes focused on the woman, because she’s the one who will need to undergo the rest of the procedures.
Another Road To Parenthood
Because the medications used to manage her lupus could harm a fetus, getting pregnant wasn’t an option for model, actress, and Lupus Foundation of America (LFA) national spokesperson Kelly Jean Drury. Instead, she and her husband, Clay, used a surrogate.
“It’s extremely expensive,” she says. “We felt really fortunate that we were able to do this.”
With the help of a fertility specialist, Drury took hormone injections to stimulate her ovaries. According to David Frankfurter, M.D., medical director of in vitro fertilization at The George Washington University, “This process involves closely monitoring the ovary’s response to the hormones, retrieving eggs, and combining them with the partner’s sperm.”
As Drury puts it, “It’s a big procedure, but it worked. I got a lot of eggs, and we got a nice number of embryos.”
Gerrity thinks using a surrogate is an excellent option for women with lupus whose drug regimen could harm the fetus. “That’s not something people would have been suggesting 10 years ago, but it’s very straightforward.” Gerrity notes it’s not uncommon for a sister, or even a mom, to carry these pregnancies.
Drury and her husband found their surrogate through an agency. “We wanted to go with an agency so everything was safe and legal and monitored. We didn’t want to just find somebody off the Internet.”
Even though Drury used a surrogate, she did everything a pregnant woman would. “I had a baby shower. I went shopping for my baby. We met up with the surrogate for doctor’s visits—we never missed one. It was just a really exciting time.”
The couple’s son, Conrad, was born May 20, 2007.
Frankfurter notes that assisted reproductive technologies (ART) aren’t just limited to the use of a surrogate. “Infertile people with lupus have numerous options depending on the cause of the conception problem. Treatments include artificial insemination, ovulation induction, or in vitro fertilization.”
The Path To Adoption
Many of today’s assisted reproductive technologies weren’t around in the early 1980s, when LFA National Board Member Cindy Coney told her doctor she wanted to start a family.
“They definitely didn’t want me pregnant,” says Coney, 52, who owns a training and consulting business in Florida. She explains that when she was diagnosed 25 years ago, no one was really sure what would happen with lupus and pregnancy. “The doctor who was treating my lupus was worried about a flare after the child was delivered.”
After a lot of soul-searching, Coney and her husband, Tony, decided to adopt. “We wanted children; we let go of how they became ours,” she says. “I can tell you today that there is no doubt in my mind that these children were meant to be ours. They just came a different way.”
The Coneys adopted through an agency. It required almost a year’s worth of paperwork, interviews, home visits, and medical exams. “Instead of just running out to get your physical like most women, for me it was a whole bunch of testing, let us look at your kidneys, let us look at your lungs, let us be sure that you’ll live to be a mom. There were a lot of discussions with the doctor who was treating my lupus at the time. They really didn’t want any additional stress on me, but I finally convinced them it was more stress for me not having children.”
Today, advises Sandy Rappeport, director of international adoptions for Adoptions Together, a Washington, D.C.–area agency, would-be adoptive parents need to be prepared for a long wait. She recommends domestic adoption for people with lupus, because international adoptions are often closed to people with chronic health issues. According to Rappeport, all prospective parents need a medical exam, and people with lupus must confirm that their symptoms are stable. “If the doctor says yes, the applicant has lupus, but it’s well controlled and this is a person who would do well parenting, then we’re going to continue the process.”
Although the wait was agonizing, Coney says the call they received from their social worker in the summer of 1983 made it all worthwhile. “She said, ‘Cindy, it’s a little girl. You and Tony have a little girl.’ I can’t put into words how happy we were.”
Eleven days later, she and Tony brought their daughter Carolyn home. “It was love at first sight. I cannot imagine that it’s any different than having a baby biologically. When that baby is placed in your arms, it’s your baby. It has to be exactly the same feeling.”
Two years later, the Coneys were overjoyed to adopt Carolyn’s biological sister, Julianne.
The Future Looks Bright
There is encouraging news for young women with lupus not yet ready to have children, but whose treatment might affect their fertility. They will soon have the option of having their eggs harvested and frozen without being fertilized. According to Frankfurter, “While this process remains experimental, it is showing great promise.”
Gerrity says another technique, still in the experimental stages, is the use of frozen ovarian tissue. “Although there have been a couple of pregnancies with transplant of frozen ovarian tissue, the better option would be if we could work out a method for isolating the eggs, fertilizing them in the laboratory, and then transplanting them back into the woman.” She adds, “We’ve been successful in getting that to work in mice, we’re very close to doing it in monkeys, but we haven’t done it in humans. We’re probably a year or two away from even trying it.”
Although people with lupus have a variety of reproductive options, experts agree the first step must be a conversation with their doctor about what makes the most sense for their individual situation.
“Listen to your doctors,” advises Kelly Jean Drury. “If they tell you not to get pregnant, don’t. Know it’s not the end of the world—there are other options. If you don’t have the capabilities for surrogacy, there are so many children in this world who need a home. Just don’t give up.” n
More information on fertility issues is available through Resolve, the national infertility association: www.resolve.org.
For women with lupus, one of the most unfortunate side effects of cyclophosphamide therapy, used to manage lupus activity in vital organs, is premature menopause or ovarian failure. This occurs when the reserve of eggs in the ovaries is destroyed.
But David Frankfurter, M.D., medical director of in vitro fertilization at The George Washington University, says this doesn’t mean women need to rush their reproductive plans. “The first question for any woman regarding reproduction—whether she has lupus or not—is, ‘Am I at a point in my life that I want to have a baby?’ And if she is, and if she’s medically stable, then she should proceed with the help of her physicians, who should include a high-risk obstetrician.”
According to Frankfurter, “Women at risk for developing premature menopause have the option of attempting fertility preservation with the use of frozen embryos. On the horizon is the ability to preserve eggs.”
The other option that exists for women who have lost their ovarian reserve is the use of a donor egg. “Egg donation is a very well worked out, successful technology,” explains Marybeth Gerrity, Ph.D., M.B.A., executive director of the Oncofertility Consortium at Northwestern University Hospital. “However, it does require you to carry a pregnancy, and if pregnancy is precluded based on your medical conditions, that may not be an option for you.”
Hermine Brunner, M.D., M.Sc., associate professor of pediatric rheumatology, Cincinnati Children’s Hospital, wants to make sure girls receiving cyclophosphamide therapy for lupus have the opportunity to have kids themselves someday.
“Besides infection, the most common long-term side effect [of cyclophosphamide] when taken by girls is premature menopause. Because children with lupus now live longer and they want to have families, this issue is a big one.”
Brunner is conducting a study on triptorelin, a medication that temporarily suppresses the ovaries. “Because the ovaries are asleep and not metabolically active, they are relatively protected from the damaging effects of Cytoxan,” she explains.
Triptorelin has been used for the past 30 years to treat children who go into puberty too early. Brunner says her team is trying to figure out the best dose to prescribe for girls with lupus.
Brunner hopes to finish the study next year and get U.S. Food and Drug Administration approval for triptorelin so the treatment will be covered for all girls with lupus who need chemotherapy.
“I hope that we will find the best dose to give to future generations of children with lupus to help them be healthy, functioning adults in the end.”
The study is being conducted at eight study sites in the United States. For more information, please see the “Triptorelin” study listing on page 39.
“I can tell you today that there is no doubt in my mind that these children were meant to be ours. They just came a different way.”