Friday, June 09, 2023

Thank you Dr. Chani Maybruch for addressing the topic of dating and genetic diseases in your column (“The Girl I Am Dating Just Told Me She is a Carrier for a Genetic Disorder,” April 28, 2022). “Heartbroken” was conflicted about marrying Miri, whom he had been dating for two months and was about to propose to when she revealed that she carries the gene for a genetic disease.
According to the genetic counselor they consulted it is advisable to only have children through IVF (in vitro fertilization) along with PGD (preimplantation genetic diagnosis) so that embryos can be checked for the gene prior to implantation. (Heartbroken does not identify the disease, but I assume from the letter that this is not a case of autosomal recessive inheritance, such as with Tay-Sachs, which would require both parents to be carrying the gene for it to be an issue.)

I would like to add on to Maybruch’s excellent and thorough advice with some practical information gleaned from my work as a yoetzet halacha, guiding women and couples through the halachic side of ART (assisted reproductive technology). Maybruch wisely advises Heartbroken to process his shock and possible trauma and acknowledge feelings of loss (either for her if he decides to leave her, or for what he thought would be a carefree future if he decides to stay with her). Ultimately, as Maybruchi said, the decision is entirely Heartbroken’s, and rightfully so.

My hope here is for people who find themselves in this situation to do a little more research, demystify for themselves the world of ART, and make decisions from a place of knowledge and empowerment rather than panic and fear. I would like to suggest that it is possible for those going into marriage with a partner like Miri to undergo a paradigm shift: from feeling overwhelmed with dread about a lifelong struggle, to feeling empowered to face a manageable, solvable (and yes, of course stressful) problem head-on. Of course these are just general points for Heartbroken to consider and I highly encourage speaking with a physician who is a reproductive specialist to address specific situations.

1. IVF might not be nearly as stressful as you think. Of course IVF comes with stress. It’s a major medical undertaking with inherent inconveniences, risks and side effects, and I don’t mean to minimize that. However I believe it is critical to separate the stress of IVF itself as a stand-alone procedure from the stress of the overall experience of infertility. When you think of IVF you are probably imagining it in the context of the latter, and what comes to mind are years and years of childlessness and heartbreak, endless failed cycles, experimental treatments… Yes, this is indeed what some couples go through, if they have unexplained or complex problems or issues without straightforward solutions available under current medical science. With current medical science, however, Miri’s situation should be fairly straightforward to deal with. (Again, I am not a medical professional and am not giving assurances, just suggestions for points to discuss with a physician.) Assuming Miri is otherwise young and healthy there is, as far as I understand, no reason to anticipate for you two, more than anyone else in the general population, the kind of prolonged distress that we tend to associate with infertility.

2. It might not be a lifelong struggle. Each IVF cycle is a tightly coordinated protocol of medications, appointments and procedures spanning a couple of weeks. It is broken down into two parts: The first is the stimulation, in which the ovaries are stimulated with injectable medication to mature multiple eggs, and then the eggs are surgically extracted under anesthesia. Then the embryologists can do their work behind the scenes to fertilize the eggs with sperm provided by the male partner. The second part is the embryo transfer directly into the uterus via catheter, a quick and painless outpatient procedure with the hopeful outcome of implantation.

These two parts sometimes happen together and sometimes with a time lapse in between; new embryos do not need to be transferred right away and can be frozen indefinitely. Why is this important to understand? It is entirely possible that one or two cycles—each spanning several weeks, not years!—could yield all the frozen embryos you will ever need. Subsequent pregnancies may very well not require starting IVF from scratch but only the much-less-involved process of frozen embryo transfer.

3. IVF is becoming more and more common. As time goes on and the genes for more and more genetic diseases are identified it’s likely that IVF and PGD will become even more commonplace. (In my opinion this is a very positive development in medical science, but I realize that is a matter of personal opinion.) Miri’s gene is known to science; other women (and men) certainly can be carrying genes for diseases and conditions that have not yet been identified. Additionally, IVF is deemed a safer, more controlled option in certain situations that have traditionally been treated with fertility drugs alone.

4. IVF is primarily undergone by the female partner. Of course a caring husband should be supportive and helpful in any way he can, and couples bear stress together, but keep in mind that in a typical IVF cycle the husband’s requisite involvement is actually quite minimal. Ultimately it is Miri who will need to attend all the appointments, take the medications and undergo the procedures. (Incidentally, this is true even when IVF is performed for male factor reasons.)

5. You might need to do IVF anyway. You, your future wife or both of you might have unanticipated fertility problems. It’s much more common than you think. People don’t go around talking about it, so you might not realize how many of the young, vibrant families you see around you in shul were built, entirely or in part, with ART. Some couples conceive easily in the beginning and have difficulty later (this is known as secondary infertility)... or vice versa! I’ve spoken to people who turned down shidduchim due to worries about genetic diseases and IVF… only to find out down the line they needed to do IVF anyway for other reasons. I’m not saying nobody should ever turn down a shidduch; this is just something to bear in mind.

6. Look into financial options. Miri’s family might be able and willing to help with this; she might have insurance coverage for this situation; and there are generous organizations out there that help the frum community with IVF bills. Keep in mind point No. 2 that Miri might not need numerous, repeated IVF cycles, and frozen embryo transfers alone are much less costly. Furthermore, you have the opportunity to go into marriage building this into the budget from the very beginning. Do some research and speak to a financial adviser at a fertility clinic before assuming this will break you financially.

7. Connect with other frum men who have been there. Trust me, you aren’t the only one, but it isn’t the kind of thing people advertise. Yesh Tikva (Yeshtikva.org) is an excellent organization that can match you (totally anonymously) with a mentor who has gone through something similar, or you can ask your rabbi if he knows anybody who would be willing to discreetly talk to you.

Heartbroken, I want to tell you that reproductive life is full of uncertainties, every couple has a story, and nobody gets a carefree future. Of course, many issues are unknown to outsiders, so there is no reason you should know this. I feel so privileged that people share their stories with me. If it isn’t a fertility or genetic issue, everyone faces something they didn’t expect in the journey of building and raising a family. Losses, disappointments and challenges are not the rare exception but par for the course, in some form or other, for everyone. I’m not saying this to promote fear, God forbid—and the joys should be many, however you choose to proceed!—but rather to put your current dilemma in perspective.

Dalia Shulman, certified yoetzet halacha at Nishmat's Miriam Glaubach Center
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