Miracle Babies: An Activist Fertility Story
/In 2014, after my first IVF cycle ended in a hemorrhagic cyst and my second cycle yielded only one viable embryo, the doctor told almost-35-year-old me that I should not wait too long to come back and (pay for) a third IVF cycle as my fertility was “in rapid decline.” I sobbed in the parking garage after that appointment. It was only a few short months after the stillborn of my naturally conceived son and the doctor’s “diagnosis” made me think that it would be nothing short of a miracle to have just one child.
As I write this listening to my toddler use perfectly-mimicked baby voice to talk to my newborn twins, I can report it has required more than a miracle to have my three children — actually many, many miracles. But not exactly the kind of miracles of hope that are often told of long-wanted children who “miraculously” came to be (that was our first daughter!) — our twins were the result of much more worldly miracles.
Most obviously, our boy-girl twins are miracles of science. They were conceived through in vitro fertilization — itself a miraculous technology — meaning they were created by removing my eggs (during rounds 4–6 of IVF, the two initial rounds were mainly failures) and combining them in a petri dish (literally, in glass, “in vitro”) with my husbands sperm and using “assisted hatching” to help an individual sperm fertilize an egg. We then employed advanced reproductive technology lab scientists or embryologists to help each embryo grow to 5 days old, at which point they were biopsied of just one or two cells. Those cells were then tested using preimplantation genetic screening to see if they were boys or girls and if they had any known genetic abnormalities. The resulting “healthy embryos” from our 6 rounds of IVF were cryogenically frozen and then would be thawed when we were ready to use them and implanted in my medically-prepared uterus. Incredible science and a testament to human ingenuity — a miracle when it works.
This isn’t the end of the story of science that brought us our twins, but the incredible science of IVF would be irrelevant without the “miracle” of privilege. Today, for most couples, IVF is not a covered medical benefit, but a pay-to-play resource available to those who can afford it. Since each IVF cycle is between $12–20,000 only people of some means can afford to “cure” their infertility or, like us, to avoid a devastating genetic issue. With the expensive medicines, the extra $5–10,000 for preimplantation genetic screening and time off work to have dozens of doctors appointments and each procedure, going through IVF is damn near impossible for the average family. In our case, we were able to live off one salary, put the other salary entirely toward baby-making and forget about saving — it proved worth it, but that’s because these other miracles happened and it eventually worked.
My family’s situation was especially cost prohibitive, both because of my husband’s inflexible military deployment schedule (and the military health insurance policy of no IVF coverage!*), and because of our aforementioned need for additional genetic screening. Our reason for using assisted reproductive technology in the first place was not fundamentally a “fertility” issue, and getting pregnant was not the only goal: we had to get pregnant with females (my miracle oldest daughter!) or figure out the cause of at least five generations of unexplained male fetal death. After our six IVF cycles yielded one failed implantation attempt of a female and a bunch of otherwise healthy male embryos, we needed a scientific discovery (read: miracle) to figure out why males conceived in my maternal lineage would die in mid-pregnancy. This came in the form of kind and passionate doctors. My mom sent handwritten letters to doctors she had worked with in the 1980s in Philadelphia, when she was having her 3rd and 4th unexplained male stillborns, and she got a miraculous response back from the amazing Dr. Susan Cowchock.
Dr. Cowchock is a pioneering researcher in reproductive endocrinology and genetics — specifically publishing on miscarriage — and has since become an ordained Rabbi serving as a chaplain for the Pastoral Care Service at Duke University. Dr. Cowchock’s memory of my Mom’s story and her interest in my now next generation struggle with the same genetic mystery led her to connect us to Dr. David Tester at the Mayo Clinic’s Sudden Death Genomics Lab. In the August 2017 Issue of “Prenatal Diagnosis” medical journal, Dr Tester and Dr Cowchock, along with other researchers, published the findings of the study that included gene sequencing of my family and solved the mystery: females in my family (and untold others) carry an autoimmune disorder called IPEX syndrome on our X chromosome, which does not affect the carrier female, but causes fetal death in the males that inherit this X chromosome.
With this known diagnosis, we could go back to the embryos made by our other miracle-worker doctor, the second reproductive endocrinologist we worked with after the failed cycles and “rapid fertility decline” diagnosis, Dr. David Smotrich of La Jolla IVF. Dr Smotrich compassionately and masterfully helped us produce enough good embryos to test and evaluate — and do prenatal genetic diagnosis on the males. Our story gets downright magical from this point on. When Dr. Smotrich called us with the incredible news that we had more males without IPEX than with it (giving us a great shot of having multiple children!!), and still one healthy female from IVF, we were — unbeknownst to us — already naturally pregnant with our first daughter. After years of treatments and trying to get pregnant, we would now have to wait until our natural pregnancy yielded our healthy baby girl before we would see if our miracle embryos would become children.
To be quite clear: if my naturally-conceived daughter had been a son, I would not have been able to know until the second trimester whether he had IPEX syndrome or not. At that point, I would have had a second trimester abortion rather than wait for the inevitable stillborn to happen on its own in order to save my body and soul the pain of continuing a doomed pregnancy. A sooner end to a terminal pregnancy for me would mean a faster, safer path to a child (too many stillborns meant necessary hysterectomy in my Mom)— poetically, choice yielding life. This woman desperate to be a mom would have needed the later abortion option that politicians are trying take away. So along with the privilege of resources to pay for this suite of procedures and injections to lead to my miracle of science twins, we would not be a thrilled family of five (!) without the miracles of activism and Roe v. Wade.
How does the legal right to abortion tie in to us using science to have WANTED children you ask? Well, the fact that technologies that make zygotes in petri dishes and implant SOME of them back into a uterus (usually only the ones that have the greatest chance of making it and have no known genetic abnormalities) is legal is questioned by anti-choice activists. The use of preimplantation genetic testing is called out as “creating designer babies” by some as well. If by designer, you mean in our arms, alive and healthy, then yes, people like us who want to screen out a deadly genetic disease are “baby designers”. Organizations like “Students for Life”, American Life League and the Thomas More Society have active campaigns against IVF and PGD for families like mine. “Personhood Amendments,” which are currently being pushed in many states, are a complete risk to IVF being available. All prospective parents who need some medical help to have children, or don’t know yet if they will need it, should be well aware of this threat. I am thankful for the miracles of women and men who have marched and lobbied for all the range of reproductive choice, which has included allowing us to bring our new son and daughter safely into our family.
The last two miracles we needed are closer to home. One was both the most simple and the most amazing to watch — the miracle of my parents’ resolve. They weathered four unexplained male late pregnancy losses and still were able to somehow focus on raising me in the midst of it. They sought out doctors and research to try and get answers, almost always being told that most miscarriage and stillbirth “just happens” and “we” don’t know why (a shocking 75% of repeat miscarriage have no KNOWN cause). Still, they kept trying to have children. Then, as miraculous for me, they reclaimed their untapped parental energy to use for my children, making my 3 under 2 even a remote possibility. While my husband was deployed, my older daughter still just one and I was trying to hold on to a twin pregnancy, my mom retired from her job in finance to help me and make sure I didn’t so much as lift my daughter into the crib. They also ensured that no other family would ever have the mystery of IPEX Syndrome causing repeated male fetal death — since it is now a researchable and testable cause of late male miscarriage.
Finally, the one miracle that everyone thinks about around the birth of child: the miracle of the woman’s body. Encouraging a cluster of cells to implant into her own body and then feeding and growing those cells into a baby (or babies!!) that can live outside on its own, is completely miraculous. Every birth is, of course, but birth of twins after many years of pain and trying and failure reminds me that my body didn’t “fail” me after all. As I write this, I am pumping for my twins and experiencing again how my one female body can literally keep three of us alive and growing — wow.
So, there’s one couple’s long, confusing, painful and joyous path to bringing three children into the world. It’s easy to see that the process required MANY miracles to happen — unlike the usual way to make babies. But, my takeaway aside from three healthy, beautiful children is this: should so many miracles have to happen in 2019 for women to get answers on something as “common” as pregnancy loss? Should families have to rely on financial miracles to utilize widely available science to have children? Shouldn’t we shut down any pathway that makes these miracles less likely- and yes, that includes radical anti-choice activists? Shouldn’t the women whose bodies are required for the miracle of growing and birthing the human race be the only ones to decide how and when those miracles occur?
I’m thrilled to be holding my own three miracle babies. But I’m also emboldened to help more people hold their own miracles. With healthcare discoveries seemingly happening every day, let’s keep the pressure on to understand the science of the miracle of life and make it widely available. With groups of men (and let’s not forget, some women) trying to legislate and govern women’s bodies, let’s recommit to keeping each woman in control of her own reproductive health. In 2019, let’s make it a little less miraculous for people to have the families they choose.
*I imagine that you, like me, are outraged that assisted reproductive technologies are not a covered benefit for military families. The official, congressionally-mandated policy for military health insurance reads: “TRICARE doesn’t cover non-coital reproductive procedures, services or supplies.” So, if you are in the military and need to deploy for your job, thereby missing coital reproductive windows, congress has mandated that you can’t access the medical technology currently available to help you have children. But, #supportourtroops!
