My Own Losses Helped Me Better Show Up for My IVF Patients

A veteran fertility nurse shares her heartbreak after multiple miscarriages and offers a unique perspective on loss and empathy for patients.

As a veteran fertility nurse at a prestigious New York City clinic, I thought I knew fertility inside and out. As a mother of two, I felt like I had avoided the fertility struggles so many of my patients endure. I also naively believed that, if I ever was to struggle to conceive, I could just use my access and expertise to circumvent it. It would all be fine. How tragically mistaken I was. I was—and am not—fine.

I’m currently in the throes of my third miscarriage after having two successful pregnancies with my first two children. They were my first and second pregnancies, both were relatively easy to conceive and with zero issues during either pregnancy or delivery. Despite all of the years of clinical experience and the hundreds of patients I’ve supported, nothing could have prepared me for this particular strain of anguish.Miscarriage is a deep pain that cannot be understood by those who haven’t endured it. Going through a miscarriage feels like your heart is being physically torn from your chest, leaving you gasping for air amidst unrelenting grief. And, take it from me, it still hurts just as much if you are unfortunate enough to go through it again. And again.

While I’ve always been praised for the empathy and compassion I shared with my patients, I look back on how jaded I was before experiencing my own pregnancy loss, and I shudder. So, as painful as this journey has been, it’s also been a huge learning experience for me as a clinician. 

To the hundreds of patients I could have done better with—I wish I could hug and hold you instead of normalizing it. I also wish I could tell you that the gestational age (how far along you were when you miscarried) doesn’t matter. I’ve had so many brave women open up to me about their losses when I speak so openly about mine and some of them say, “but mine was much earlier, ”and to them I say, a loss is a loss, no matter how or when it happens. No matter what may happen in the future. No matter if you already have a child or children at home. It’s the projection of a future, it’s the preparation for joy—and all of a sudden, it’s not anymore. It’s everything you envision and prepare for in your heart from that first positive test.

We found out about my first miscarriage at my 12 week visit. I had no signs or symptoms, I was just strolling in for a routine ultrasound. This was from our first embryo transfer in November of 2022, which worked and we thought everything was easy peasy – one and done. Even my doctor thought I would just come in when I was ready, pop in an embryo and off I’d go. The last thing I was expecting was the “I’m sorry” and the hysterics I then went into. 

I have never reacted to anything like that in my life before. I can still feel it all so vividly. I still remember saying to my husband that I would never recover from it and I would never do it again. And yet, I worked through it and I persevered. But not before completely losing my mind at my D&C appointment. I was in such a bad place the morning of my procedure that I was screaming and crying in the hallways of the clinic—again, something that I had never experienced before in any setting of my life. It went against every fiber in my being but that was the raw emotional experience I was going through—that’s how heavy it was.

We did another transfer in March of 2023, my second, that resulted in a biochemical pregnancy, which is when an embryo implants but doesn’t continue to grow. After that we decided to freeze another batch of tested embryos just in case there was something wrong with this batch—even knowing everything I know and deep down knowing this probably wasn’t the case. 

I did another egg retrieval in May and we used an embryo from that new batch in June. It worked on the first try again and the embryo ended up splitting spontaneously—identical twins. And while that wasn’t in the plan, we were so excited for such a big, happy change. We lost the twins at 11 weeks, with no reason or explanation – this was the second miscarriage. We swallowed another “fluke” and resolved that our bad luck must have run out at this point.

Devastated but determined, we decided we would take some time off and give it one last try. We did another transfer in December, the fourth, and it worked again but I had such PTSD so I didn’t get my hopes up. I held my breath at every weekly scan. But since everything was going smoothly past the first trimester this time, I gave myself a little leeway to be happy and hopeful. 

We started planning again. This was it—until it wasn’t. 

Unfortunately, just shy of 16 weeks, I went in for a scan because I had a bad feeling and the rug was pulled out from us once more – a third miscarriage. No heartbeat. And on to my third procedure to remove a so-badly-wanted pregnancy. This time a D&E, or dilation and evacuation, since I was further along. I had to be intubated in case of excessive bleeding and need for further intervention. That was my sixth procedure in under two years, not including the four transfers, which include a pill box full of daily oral medications and my kaboodle of injectables.

It’s hard to go through this while still practicing as an IVF nurse because there is no longer a separation between my life and my work. I must balance my two young daughters’ questions about why we can’t have another baby with the questions of my newly pregnant patients about their pregnancies and future babies. 

I must fit in my sobbing fits in between interviews and virtual care sessions. One of my patients said to me “you’ve endured and survived some of the darkest fears of all of us over and over again” and that really moved me. Who better to do this than me? But at the same time, I’ve really had to implement boundaries and breaks. Or else I will break.

I will be ok—and for those of you yearning trying, losing, grieving: you will be, too. We’re not always meant to have the answers, but we shouldn’t always push ourselves to be reasonable while dealing with situations we have little-to-no control over. It is incredibly challenging, and you have to feel everything to heal. The teacher becomes the student here (cue Alanis Morissette’s “Ironic” for all my fellow millennials) and I’m going to take this awful time in my life and twist it into even more empathy, hope and care for the fertility patients I get to guide to the other side.

I’ve had the privilege of bringing so many babies into this world, a blessing I never take for granted. But now, as my husband and I face the heartbreak of being unable to have another child, I see pregnant women and newborns through a different lens. It used to be routine, even given my profession, but now it stirs deep emotions. It may bring tears and pangs of longing for what might have been, for the experience we yearn to have again. 

Yet, it also brings relief and happiness for those who have reached this beautiful milestone. It reminds me of the precious moments and feelings I shared with my husband and our baby girls during that cherished phase of our lives. I will treasure and honor those memories, and that part of us, forever. Inspired by my own experiences and of what I now know many others endure, I started Dandi, a fertility care platform rooted in community with on-demand virtual care and physical care products to ease the burdens of the fertility journey. I will use my own experiences as my motivation to continue to provide hope and help to anyone trying to start and grow their families.

I’m not ready to give up, even against the advice of my OB, my high-risk doctors and just about every other second opinion we consulted. Even our friends and family think I should just accept that “it’s not meant to be” and that “everything happens for a reason” and move on. But I’m still not ready to close this chapter. While I don’t think I have it in me to do another transfer any time soon, we may pursue a gestational carrier or try to conceive on our own. We’re healing but hopeful.



Author

  • Leyla Bilali is the Co-Founder and Chief Clinical Officer atDandi. Leyla’s unique perspective as both a fertility expert and IVF patient provide her unparalleled insight into the type of care that fertility patients so desperately need. With more than a decade of nursing experience, Leyla started her career as a pediatric nurse before pivoting to the field of reproductive endocrinology. She honed her skills at one of NYC’s top fertility clinics, where she helped thousands of patients through her exceptional nursing care,unconditional compassion, and even a bit of humor! Leyla quickly realized her calling as “The Fertility Fairy Godmother,” and founded her own fertility consulting service, Fertility Together, to provide patients personalized, compassionate care throughout their IVF journey, supporting patients in all the critical moments outside of the clinic. As a three-time fertility patient herself, Leyla understands firsthand the emotional rollercoaster of this journey, and is able to provide empathetic, personalized counsel to her patients. Leyla’s unique experiences inspired Dandi’s virtual support services, filling a gap in the care journey by providing guidance, coaching, education that is real-time, personalized and medically-credible.

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