An Interview With Lucinda Koza
Proper Coping Mechanisms — This can be a little tricky during fertility treatment because some of your usual coping mechanisms may fall within the restrictions — such as exercise and travel. Some IVF-safe options like walking, acupuncture or speaking to a counselor and or therapist who specializes in fertility.
Infertility and the journey through IVF are challenges that many individuals and couples face, often accompanied by emotional, physical, and financial stress. Despite advancements in reproductive technology, the process can be isolating and fraught with uncertainty. How can we better support those navigating infertility and IVF, and what strategies can help manage the various challenges along the way? As a part of this series, I had the pleasure of interviewing Leyla Bilali.
Leyla Bilali is the Co-Founder and Chief Clinical Officer at Dandi. 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. 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.
Thank you so much for joining us in this interview series! Before we dive in, our readers would love to “get to know you” better. Can you tell us a bit about you and your backstory?
I’m a nurse with big ideas for fertility care. I started my career as a pediatric nurse, before realizing my calling to work with those struggling to conceive and preserve their fertility. After supporting thousands of patients in the clinical setting, I launched my own fertility concierge business to focus on providing more hands-on, personalized care to patients at every step of their journey. Now, I’m helping bring these solutions to more people through Dandi. I am the mother of two incredible girls!
Describe the process of realizing you had challenges with fertility. What was the level of access to resources available to you in order to see the right doctors, run the right tests, etc?
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 — I have access to some of the best practitioners and tools available to me, yet I’m still struggling.
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. I went through IVF back in 2022, and became pregnant after our first embryo transfer, but ultimately miscarried at my 12 week visit. We continued to try — with two more transfers, both of which sadly ended in miscarriage. I’ve had access to the best specialists, doctors, tests in the world — and still few were able to give me the answers of why this was happening.
Did you keep this realization private? If so, why?
These losses were heartbreaking. 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. As someone who works with IVF patients daily, I’ve been open about my story to use it to help others and inform my counsel with them. More than anything, I want to show up for my patients and help them through the hardest moments by showing them that I truly understand their struggles — I’ve been in their shoes.
How much did this realization affect your sense of self, or call into question your plans for your future?
The whole experience has greatly affected my sense of self — for better and worse. My career has been my identity because of the overlap in my personal and social lives — when I started working in fertility I was in a peer group outside of work that was also in the “childbearing” and family-building stages of life. So there really has never been a separation, even when I probably needed it during my healing process. It has definitely made me stronger and more empathetic but the resentment of the lack of separation does peek through at times, if I’m being totally honest. But I’m able to check that because who I am at my core resonates more with the strength & empathy than resentment. I do think, though, both need to exist and be felt and worked through to fully heal from so much loss.
Following through with the complete process of fertility testing and treatment can be absolutely grueling for your body for what could be years. How did you cope with constant procedures, medications, hormones?
I really underestimated what my patients go through in this regard until I went through so many back-to-back procedures and hormonal changes myself. I was really consistent, though, with my self-care habits and I think that was a huge help. Not only were they positive coping mechanisms — working out, eating nutritious foods, facials, etc. — but they also helped to regulate my nervous system. It was also helpful to keep reminding myself that it’s all temporary — the pain, the weight gain, skin changes, all of it. And ultimately that temporary struggle was meant to lead to something so worth it.
Was there a point at which you felt as if your body wasn’t your own? If so, how have you been able to reclaim it? Explain.
I think that’s exactly what infertility and miscarriage does — it makes you feel as if your body isn’t your own, as if it’s betraying you. You do all the “right” things and make any necessary changes and when it still doesn’t work you feel so out of control of your own body. Again, I think the consistency with my self-care habits helped a lot and gave me a starting point for reclaiming my body when the time came.
Can you please share “5 Things You Need to Navigate the Challenges of Infertility and IVF”?
1 . A fertility doctor (reproductive endocrinologist) who is board certified and trained at accredited facilities. You want to make sure your RE has the right credentials but also feel out their team — from the front desk to the nurses. You want to be comfortable in their office setting since you’ll be spending a lot of time there.
2. A fertility consultant who is a licensed medical professional (think Dandi’s team of highly curated fertility nurses). Navigating the clinical process can be daunting, especially for the first time. And the internet is full of digital resources (Dr. Google, Reddit forums, Facebook groups) which offer information that is generally not personalized or medically-credible. Which is why having a fertility consultant to guide you every step of the way can make all the difference. When finding a support resource, make sure they’re medically-credible — somebody with clinical experience and credentials. While it’s a beautiful thing for fertility patients to pay it forward with services such as fertility coaching, be mindful of medical licensure, training and clinical experience. Dandi’s team of registered nurses have years of clinical experience and are here to provide support that is on-demand and personalized to meet you at every step of your journey.
3. A good listener. So many people are trying to conceive or going through fertility struggles in silence. This makes an already-difficult journey all the more isolating. Having a “go to” person that you can connect with for emotional and moral support can help to alleviate some of the stress and mental burden. Whether this is a friend, family member or co-worker, make sure they’re an expert listener. So often, others try to support those struggling by talking — sometimes offering “toxic positivity” or overly optimistic suggestions. While their intentions are good, sometimes what is most useful is somebody who is just there to listen — to make you feel seen and heard.
4. Mental + Physical Comfort for Injections — The mental distress of injections — let alone the physical pain can be challenging. Patients are sent home with a box of medications left to mix and administer their own injections at home, alone. This physical care kit is specifically designed to provide numbing pre-injection, warming therapy post injection, and a massage ball to ease out the “knots” from the thick medication, all with a hands-free compression belt. Additionally, live 1:1 video consultation, led by registered fertility nurses, can help walk you through the injections or medical unboxing for peace of mind that you’re doing it right.
5. Proper Coping Mechanisms — This can be a little tricky during fertility treatment because some of your usual coping mechanisms may fall within the restrictions — such as exercise and travel. Some IVF-safe options like walking, acupuncture or speaking to a counselor and or therapist who specializes in fertility.
A woman’s drive and desire to be a mother could be completely personal, simple, or nuanced. It could also be a bold imperative. I believe mothering and caregiving is the most essential labor toward creating a better society. Would you share what has driven you to work so hard and sacrifice so much toward this goal?
I, too, think a consistently present parent is crucial for someone to grow into a positively-contributing member of society. And I think family dynamics as a whole play a huge part in this — not just parents but siblings, too. So I wanted to continue to build my family to give my children as much reinforcement within their own household and bubble as possible. I’m able to struggle and work through the pain of loss to give my children another sibling with the hope that it’s worth it for them in the future — it’s a sacrifice for them.
Is there a person in the world, or in the US, with whom you would like to have a private breakfast or lunch, and why?
This is a hard question! I think Jay Shetty would be a good one for me — I need all the inner peace and zen I can get!
If you could start a movement that would bring the most amount of good to the most amount of people, what would that be?
Destigmatizing fertility treatments and helping bring these conversations from out behind closed doors so women and couples feel empowered and confident through their own fertility journeys!
How can our readers follow your work online?
Readers can keep up with the incredible work we’re doing on dandifertility.com or following @dandifertility on Instagram!
Thank you so much for joining us. This was very inspirational.
About the Interviewer: After becoming her father’s sole caregiver at a young age, Lucinda Koza founded I-Ally, a community-based app that provides access to services and support for millennial family caregivers. Mrs. Koza has had essays published in Thought Catalog, Medium Women, Caregiving.com and Hackernoon.com. She was featured in ‘Founded by Women: Inspiration and Advice from over 100 Female Founders’ by Sydney Horton. A filmmaker, Mrs. Koza premiered short film ‘Laura Point’ at the 2015 Cannes Film Festival and recently co-directed ‘Caregivers: A Story About Them’ with Egyptian filmmaker Roshdy Ahmed. Her most notable achievement, however, has been becoming a mother to fraternal twins in 2023. Reach out to Lucinda via social media or directly by email: [email protected].
Leyla Bilali Of Dandi On Navigating the Challenges of Infertility and IVF was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.