On Tuesday, Feb. 11, 2002, Popular Science Life Sciences Editor Rebecca Skloot, Bill and Susan McNamara — a couple who had three children with assisted reproductive technology — and Kathy Hudson, Ph.D., the Director of the Genetics and Public Policy Center of Johns Hopkins University, participated in an infertility chat on America Online.
Welcome to our Infertility Chat. Tonight we have Rebecca Skloot, author of the Popular Science article, Susan and Bill McNamara, featured in the story, and Kathy Hudson, Ph.D., Director of the Genetic and Public Policy Center at Johns Hopkins. We will be taking your questions now. Thank you for attending.
What were the final findings in the Popular Science article?
Infertility treatments have been around since the 70’s and about a million children have been born. Today these treatments are very common and have brought children into the lives of many people who would not have been able to have them. But several recent studies have shown that there may be a significant increase in birth defects from these treatments. These studies are not conclusive yet. But at this point, there have been enough that we need more serious research to determine how real these risks are, what the long term effects of ART may be, and what can be done to make it safer. There aren’t animal models that accurately represent human reproduction so some of this may have to be done in human embryos. If that is the case, our research should be funded by the government to ensure oversight. Either way, some sort of regulatory body should be established to oversee this ART research.
Which infertility treatment(s) did you use and how long did it take you to conceive?
The McNamaras: We did in vitro fertilization and we got pregnant on the fifth try. The reason it took that long is I was misdiagnosed. An improperly done HSG was culprit, it was read wrong. So they thought I was a DES daughter but in fact, I only had a septum in my uterus. Once that was corrected, I got pregnant doing IVF. DES is a drug of the 50’s and 60’s for miscarriages that now is known to cause birth defects in their children. HSG is Hysterosalpingogram.
How common is it for the female immune system to attack the sperm?
I’m sorry, we don’t know the precise statistics but we have encountered several people who have had this.
We’ve done ICSI 3x, no pregnancy and are going for a fourth time. What protocol did you use?
The protocol was the sperm wash, ICSI process. Then the eggs were co-cultured and then transferred.
What was your reaction to the information you received?
The McNamaras: From the article, I was kind of upset with the title. The process described in the title had very little to do with the article. The fact that Popular Science has in essence of accusing us of experimentation on our children. I take great issue with that. As far as the technical information in the article, I’m trying to find out more. I wish they had put more in the article about where the information came from.
The Popular Science article says the McNamara children were grown on a piece of cow womb before implantation, but that this method is now restricted by the FDA. Does that mean this method is not available to infertile couples at this time?
Yes, that is what this means. Is the FDA requiring doctors to tell their patients about the risks? The answer is no.
So how many times did you do ICSI before being successful and which birth was it? First or second? And your age?
We did ICSI only twice to have the first one. The age at the time we started was 28 and 30 and I had my first child when I was 36.
What’s next on the horizon for treating infertility?
Kathy Hudson: There is an enormous amount of research going on now to understand the physiological and genetic causes of infertility and some of those will provide insights that will lead to new and hopefully more effective treatments.
Bill: In the past, historically, people have referred to it as a female problem. While the doctors can tell you almost every hormone that goes into a woman’s cycle, they can tell you very little about how the sperm is created in the body and hopefully that attitude will change and more research will be undertaken to determine male infertility issues. It really is a joint problem.
Kathy: The experience that Bill and Susan had with being offered genetic screening of embryo’s created in vitro, the number and variety of such tests are going to increase very steeply. And so, in addition to just being able to look at large scale alterations in chromosomes, physicians will be able to look at very small changes in DNA of individual genes that are confronting parents who are already in a situation rife with decisions and anxiety with even more choices about which embryo they wish to implant.
Rebecca: There is also increasing amounts of research being done to determine what might cause any birth defects seen with ART. Researchers are looking at developing cell culture media that is safer for growing embryos, they are looking to understand how, for example, freezing embryos might affect them genetically. Hopefully this will lead to safer and more effective treatments.
I had endometriosis in 98 and laser surgery. I conceived the same month with help from clomid (what a blessing). Does anyone know if it comes back and what are my chances of conceiving without assistance (surgery)?
We have read that it can come back but we don’t know the statistics.
Bill: Being you already have a baby, you’re in pretty good shape. Also, you can check at resolve.org, physicians usually host chats there.
Are any of you using a surrogate at this time?
Bill and Susan: No, we’re finished at this time and very poor. 🙂
What information do couples need to know to help them make decisions about ART?
Kathy: Couples need to understand what’s involved in the procedure, understand what the risks are of the procedure specifically for superovulation, they need to understand what the odds are of success, they need to understand what the long-term health consequences are for both parents and the resulting child and in many of these areas we have incomplete information and need to pursue research to provide the information to the patients.
Bill and Susan: Be as informed as possible about all of the aspects. Know what your insurance does and doesn’t cover. Understand the statistics that are presented to you for success rates CAN BE manipulated. Look at things like pregnancy rates vs. “take home baby” rates to make sure you are comparing apples to apples. You are actually in this process actually purchasing a very expensive procedure so it’s your responsibility to make sure you understand what’s happening and that you are an active participant in the procedure. You need to make sure the doctors will be there not for just the medical procedures but for the emotional support needed during the process.
Rebecca: It might be important to know how are these things are regulated, what is known about them, what questions scientists have about them. For example, with co-culture, many questions had been raised before the FDA stepped in to regulate it. But few, if any, patients were told.
I’m 36 and have endometriosis. I have had 2 surgeries and still nothing. The Dr. said I’m only a stage 1 or 2 and have done IVF 3 times. Is there anything else I can try?
This is really a question best posted for resolve.org but it took us 5 tries.
What would you do differently based on the information in the article?
Bill and Susan: I think it’s important to point out that the information in the article wasn’t available when we made our decisions. Given the FDA actions, there wouldn’t be a decision to be made…it’s been pulled. (Specifically for co-culture) If we didn’t do ICSI, we wouldn’t have children. Honestly, if it was presented in a way that it would cause trauma to our offspring, we probably wouldn’t have done it.
Thank you everyone for attending the chat.
Please check out resolve.org for any medically related questions and support.
For information on research and regulation go to www.dnapolicy.org.
To read the article we are referring to, click here.
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