Fetal tissue donation has been making headlines after an anti-abortion group began releasing undercover videos targeting Planned Parenthood — the third of which was released yesterday. The videos have ignited fierce debate on a practice unknown to most as little as a month ago: the fact that many women receiving abortions are given the choice to donate their fetal tissue to medical research — research that has been conducted over decades and has given us many lifesaving vaccines and disease treatments.
We’ve heard from many experts on both sides of this debate, but we’ve yet to hear from women who have actually made this decision for themselves. Yahoo Health spoke with three women who shared their very personal decisions to donate their fetal tissue to research. For additional candid responses about why some chose to donate, or not donate, fetal tissue after having their abortions, we teamed up with Whisper, the free app that allows users to share their secrets anonymously.
“It gave me a little bit of closure to know I’m making a difference. I gave back a little. I did a little bit of good here. This shouldn’t have to stop happening. People should always have this option,” Kate, a woman who chose to opt in to fetal tissue donation after terminating her second, wanted pregnancy, told Yahoo Health.
Kate’s fetal tissue donation ultimately went to the Children’s Hospital of Philadelphia, one of the oldest and most prestigious children’s hospitals in the world, and was part of a study on Down syndrome.
Kate had gotten pregnant very quickly after her first son was born. Her son was just 10 months old when Kate went for her anatomy scan at 20 weeks of pregnancy and learned that the second son she was pregnant with had bilateral renal agenesis — and thus had no kidneys or bladder.
“You can’t even see the kidneys in an ultrasound until at least 16 weeks,” Kate shared, noting that while at first she had hoped that perhaps a kidney transplant would be enough to save her unborn child, she quickly learned that was not an option. Bilateral renal agenesis is a fatal condition.
“I was given the choice to do labor and delivery. I would have had to do it that night. I decided that wasn’t the right option for me since going through labor has more risks than termination does,” Kate said. “As my doctor put it, ‘You don’t want to put yourself at risk for a child who has no chance.’ I had a 10-month-old baby at home. If I had carried to term – and I probably wouldn’t have been able to carry to term without going into labor — the baby most likely would have died before birth. If the baby survived birth, it wouldn’t survive more than a few hours because the lungs weren’t developed. I made the decision that I felt was more compassionate – the decision to end the pregnancy. I was 22 weeks and five days.”
When Kate went in for the first step of the two-day process necessary for terminating a second-trimester pregnancy, the physician performing the procedure gave her the option to donate her fetal tissue.
“You don’t do this because you get something out of it, but because someone else gets something out of it,” Anne Davis, MD, the consulting medical director of Physicians for Reproductive Health and an associate professor of clinical obstetrics and gynecology at Columbia University College of Physicians and Surgeons in New York City, told Yahoo Health last week. “In abortion, when a woman chooses to end a pregnancy and says, ‘I didn’t want [to need to have] an abortion — no one does — is there any way I can donate fetal tissue so that something good can come out of what I’m going through?’ And that’s great. That’s amazing that people can be that compassionate when they’re going through something so stressful.”
According to the Guttmacher Institute, approximately 90 percent of abortions are performed in the first trimester. And of the approximately 1.2 million induced abortions performed in the United States each year, while less than 10 percent occur in the second trimester, only 1.3 percent occur after 21 weeks of gestational age.
Katie, another woman who elected to donate fetal tissue, had an abortion when she was 21 weeks and six days pregnant. She and her husband were newlyweds and wanted to start trying to grow their family immediately. They were married in September and by November were pregnant.
Before she and her husband started trying to conceive, Katie tells Yahoo Health that she “started taking prenatal vitamins and doing all the things you are supposed to do before you get pregnant.” Which is why Katie and her husband in no way expected her alpha-fetoprotein (AFP) test, administered at 18 weeks, to come back abnormal. The amount of AFP present in a pregnant woman’s blood from her fetus can serve as an indicator of Down syndrome, when AFP levels are abnormally low, or spina bifida, when AFP levels are abnormally high.
Katie was quickly scheduled for a level two ultrasound with a perinatologist. “I’m a layperson,” says Katie. “My college degree is in the liberal arts – and even I could see there was a problem.” The ultrasound showed spina bifida, a tethered spinal cord, and a heart defect.
“My husband and I were devastated, obviously,” Katie shared. “We took some time to think about it. I went to a specialist for a prenatal echocardiogram. I think we knew we were going to terminate, but I didn’t want to make that decision in haste. So we took time to do more research to make sure we were really making the right decision. So, somewhere in all of that, my husband and I realized that we wanted to donate” their fetal tissue.
Katie and her husband asked their genetic counselor to help them in finding an appropriate study to which they could donate their fetal tissue. Soon, the genetic counselor found a match in a National Institutes of Health-funded research project on spina bifida.
“You think this is never going to happen to you,” Katie says. “You’re an adult. You’re married. You love each other. You decide to have a baby. You do all the things you’re supposed to do to have a healthy pregnancy. And somewhere along the lines, something goes horribly wrong. And things happen. And no one thinks horrible things will happen to them. And if this horrible thing could happen to us, that means it could happen to other people. If we could take this awful thing and turn it around so that someone else didn’t have to go through what we were going through… People need to know that this happens. Abortion happens to everyone.”
Kathleen is another woman who did not expect to have an abortion. She has bipolar disorder and after having been stable for more than a decade was thrilled to meet a “wonderful guy” and get married. She and her husband decided to start trying to conceive, and while many psychiatric medications used to manage bipolar disorder can be dangerous to a developing fetus, the medications Kathleen was on weren’t explicitly known to be. She spent more than a year working with her psychiatrist, her general physician, and her ob-gyn to gradually lower her dosages just to be on the safe side. And shortly thereafter, she got pregnant.
“We were over the moon happy about it,” Kathleen told Yahoo Health. “I worried a lot – a lot of women do – during the first trimester. I told myself that until [I was] 12 weeks [pregnant], I’ll worry – but once I hit 12 weeks, I won’t worry anymore. And I had happy days. I let myself have happy pregnancy days.”
During her second-semester screening tests, however, Kathleen learned that her fetus had cystic hygroma and many other birth defects. “If by a miracle the baby had survived childbirth, it would have had a very short life,” Kathleen says of her diagnosis. “And that life would have been very painful. So we decided to terminate. We were devastated. We still are.”
Kathleen notes that she had never heard of fetal tissue donation before she decided to terminate her pregnancy. The grief counselor at the clinic where she was scheduled to have her abortion was the person who first told Kathleen that it was something that would be an option for her. The second Kathleen learned about fetal tissue donation, she says, “I didn’t hesitate.”
“There was interest in the fetal tissue because of the medications I was taking during my pregnancy. … And it was just a situation where, like, we worked so hard to get to lower dosage with my medications. And it was so hard. It was a really hard process. And to then have to terminate for something completely unrelated to that – it was like this year we went through to make this pregnancy happen didn’t count. It was like that suffering was for nothing.”
Fetal tissue donation, however, gave Kathleen a sense of purpose and meaning in the midst of personal tragedy.
“If any knowledge of any of the medications I was on could impact any pregnant woman – that’s why I wanted to donate tissue,” Kathleen says. “I really feel like I had this opportunity and I had to do the right thing and make this decision. We didn’t think about it long and hard. It was just an extension of things I already felt. I have always believed in medical research, and I was really concerned with wanting to help other pregnant women who were struggling with mental illness. I don’t know who received the tissue or what they’ll do with it. But both my husband and I were more than willing to do it and thankful for the opportunity.”
For more confessions about sex and reproductive choices, check out Whisper.
Have a personal health story to share? We want to hear it. Tell us at YHTrueStories@yahoo.com.