Navigating IVF After the Loss of a Child

By Veronica Court, mother to Violeta and Dalia

I used to be the person who saw IVF (In Vitro Fertilization) on TV or social media and think, “Wow, I don’t think I’d ever want a kid so badly that I’d subject myself to that”.

But that was before Violeta. Violeta was our one-and-done baby, easily conceived in our first month of trying. After an uncomplicated and easy pregnancy and delivery (or as easy those things can be) I found my role and purpose in this world: to be Violeta’s mom. I loved being her mom. I loved seeing her grow, and learn, and develop her spunky, independent, playful personality. She had the best cackle and kept my husband and I laughing daily.

Violeta had a simple (but scary) quick seizure the first time she got a fever at seven months. Because my husband also had febrile seizures as a child, while we were anxious, we were hopeful and reassured by her team that she should outgrow it. Her team suggested genetic testing, since febrile seizures ran in our family.

In October 2024, we got the news that Violeta had a mutation of the SCN1A gene, which can cause anything from simple febrile seizures like my husband had to a devastating and dangerous condition called Dravet Syndrome. In November 2024, at 13 months old, Violeta had her second and last seizure that took her from us, passing away from Dravet Syndrome’s severe unstoppable seizures.

Amid the utter grief and shock, my husband and I immediately went into action. Life without Violeta felt impossible, but life without Violeta and without the prospect of being parents to a living child felt even worse.

IVF, the thing I vowed I’d never do, became my lifeline. I quickly learned that IVF can identify a specific gene and screen for it (PGT-M).

Two weeks after losing Violeta, in the complete haze of grief, we went to our first IVF consultation. Four months later, after scans and tests and creating the gene probe that tests for our family’s gene, I did my first egg retrieval. Given my advanced maternal age (late 30s) and the gene’s dominance (meaning 50% of our embryos would be expected to have this potentially fatal mutation), I did five egg retrievals over nine months, retrieving over 70 eggs, making over 30 embryos, and ultimately getting three embryos that were healthy and didn’t have the gene mutation that took Violeta.

A selflessly kind friend offered to be our gestational carrier for our first embryo while I chugged along doing egg retrievals. The embryo transfer worked, and our daughter Dalia (Dolly) was born in March 2026, three months after my last egg retrieval. 

She brings me so much joy, gives me purpose again, and is the smile-iest, happiest baby I’ve ever seen. She is a gift from Violeta, and we love her so much. 

I have two embryos left, and I’m hopeful to carry Violeta and Dolly’s little brother into this world soon!

IVF is a rollercoaster for the average family. IVF after losing a child is harder. It is all-consuming. My thoughts bounced from Violeta to egg quality to Violeta to follicle measurements to Violeta to “how on earth is this my life?!”. All of that being said, I would do it again, and I am so thankful to live in a time where I can protect my babies from harm in this way.

For those of you navigating loss and IVF simultaneously, I’d like to offer you this:

Share your story with your IVF team. I had two IVF clinics, and both truly went above and beyond when they saw the journey I was on. I got extra calls checking in and immense compassion from most of my care team, and having my nurses know Violeta’s name and see pictures of her made me feel like they all wanted to get Violeta’s sibling here for me!

Get second opinions. If you’re like me, you’re absolutely sprinting to get your baby here. If things aren’t working at your clinic, try somewhere else. I went to two clinics just to try different approaches, and we learned a lot about how I respond to the medications.

Don’t go through it quietly. Share with a trusted friend or family member. Grief is so isolating, especially after the newness of losing your child wears off and people go back to their normal lives. IVF is also isolating. It can be all you think about. I was probably overly open about it (my whole work team knew about each retrieval) but I can’t imagine doing that without someone to talk to.

Use online resources. Reddit has some incredibly supportive groups related to IVF (r/IVF and r/InfertilityBabies were my two go-tos). I educated myself a lot from those forums to inform questions I’d ask at my appointments. More importantly, I found incredible connection and a sense of community in those groups. I even found another SUDC mom who lives a couple hours away and is now a close friend.

If you can, keep going. Take breaks if you need them. IVF is a numbers game. If your doctors are telling you to try again, it’s because they believe there’s hope. I wanted to quit so many times, especially after two failed cycles in a row. I’m so thankful I didn’t and am honestly proud of my strength in enduring five cycles.

Finally, unfortunately, you’ve been through worse than IVF. Because you are strong enough to have survived the worst possible loss, you ARE strong enough to do IVF and navigate the physical and emotional discomfort that comes with IVF for most people. IVF is never a guarantee, but the hope it brings is worth it.

As I sit here rocking Dolly to sleep, I am just so hopeful that the rest of you on this path get that miracle that you deserve, too.