By Steph Hauser, as told to Amelia Harnish
Content warning: The following is a personal story that contains experience with pregnancy complications and premature birth.
For What to Expect's "Mom Heroes" series, parents who have gone to great lengths to help others share their inspirational stories.
No one thought my son, Zev, was going to make it through birth, much less grow into the thriving 6-year-old he is today.
At 6 weeks into my pregnancy with him, I thought I miscarried because of a major bleed. I continued to bleed off and on until I was about 14 weeks — yet every time I'd get checked by my doctor, Zev's little heartbeat was there and his anatomy scan around 20 weeks was perfect.
I thought we were in the clear until 23 weeks when I spiked a fever and landed in the emergency room. I clearly had an infection, but doctors weren't sure where it was. Was it my appendix? My kidneys?
I felt some cramping, but my cervix was closed so the ER staff were pretty sure I wasn’t in labor — until I felt wet, saw blood and realized it was bloody show. Everyone’s faces went white when that happened, and there was suddenly a mix of awareness and terror in the room. Signs of labor meant the infection was in my uterus, most likely contracted during those early bleeding episodes. The only way to treat it and save my life was to let labor progress and give birth vaginally, but at 23 weeks, the odds of survival were low.
Having an extremely premature baby was one of the hardest things our family would ever go through — but it also activated my desire to help others. Watching Zev fight for his life for 147 days in the neonatal intensive care unit (NICU) made me want to fight for families like ours. So I ran 147 miles to raise money to help micropreemies and their parents. Now that Zev is 6, I know how hard that journey is — and why these babies and families deserve all of the help they can get.
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My son's NICU stay defied the odds
Despite his underdeveloped lungs, Zev cried the moment he was born. No, he yelled. It was like he was saying, "I'm here, and I'm stronger than you think." The whole room ignited in cheers and tears. Doctors whisked him off to the NICU, and me off to get treated for my infection.
Zev weighed just 1 pound and 4 ounces at birth and could fit into the palm of a hand. He spent the next five months in the NICU. We'd get an update every few hours, and a lot of the time, those updates were not good. Zev suffered lung collapses, brain bleeds, heart issues, nutrition complications, infections and potential blindness.
After Zev’s worst night in the NICU, when they tried literally every piece of technology and none of it was stabilizing him, the doctors pulled us into a room. "You have a choice," they said. "We have come to the end of the care. He is dying. We can turn off the machines and let him peacefully go, or we can try our last hail mary."
They explained that giving him steroid medication could help him rally, but there was a significant chance he'd never walk, talk, play or function without medical support if he did survive.
We made the decision that felt right for us: We chose the medicine. I felt that it was worth trying. If we were lucky enough that he did survive, my husband and I promised each other we would do whatever it took to create a world where Zev could thrive, no matter the consequences or the cost. That night planted the seed for our nonprofit, 4those.
Our experience led us to support other families like ours
About 1 in 10 babies born in the United States are premature, meaning they're born before 37 weeks gestation. Babies born before 28 weeks like Zev are referred to as "micropreemies," and they're at the greatest risk of death and complications.[1]
We started 4those in December 2022, about three years after Zev was born. Our mission is to support families of micropreemies and give them a place to come together. The journey doesn't end when — or if — you get to bring your baby home. Many micropreemies go on to deal with a variety of medical outcomes as a result of their prematurity, from heart and lung complications to physical disabilities to compromised immunity. Families have to take special measures to keep their kids safe, which can be isolating because it means missing gatherings like birthday parties or not being able to play at the regular playground. Parents and caregivers often need to heal themselves as well.
Our workshops and events in Central Colorado allow families like ours to connect with others who really get it. The big goal is to create a physical, permanent space where NICU families can come to grow and heal together.
All of this costs money. When we founded 4those, we got a $10,000 grant from a local church to get started. But I knew we needed to raise more, and I thought, What can I do? Well, I can run.
I've always been a runner, and in my 20s I even did an Ironman triathlon and a 50-mile ultramarathon. I thought it'd be fitting to run 147 miles, one mile for every day Zev spent in the NICU to raise awareness. I promoted it on my Instagram and among my network, and people went to our website and just donated what they could. Some people donated $20, some as much as $1,000.
Running let me fully process my NICU experience
Running long distances like this is such a perfect metaphor for the NICU experience: Both contain whole lifetimes within them.
I started training in January 2023 and planned to run 147 miles that September. The plan was to skip sleep and try to complete the run in around 36 to 40 hours, but as life goes, things did not go according to plan. The first day was incredibly hot, so I tried to stay hydrated and eat enough calories. But around mile 76, I was crashing and knew I needed to sleep. Physically and mentally I was in what’s known as "the pit."
So, I took a break, slept for about an hour and a half, ate a good meal and pulled through thanks to support from my crew and pacers. My best miles ended up being between 82 to 100 as the sun came up. It was just like being in the NICU, getting through those low valleys to come to that mountaintop.
Perhaps the most important similarity between the run and the NICU stay was how my community rallied around me. I'll never forget the hundreds of people cheering me on, running with me and donating money that we need to fulfill our mission. It was the most humbling experience, second only to how this same community had shown up for us when Zev was in the hospital.
Now I'm going to run even farther to help more families
We ultimately raised $50,000 with that run alone and made a documentary to share our story. This money went toward our signature annual event, NICU Family Day Out. Each year, we have about 100 people come to enjoy train rides, a petting zoo, face painting, a rubber duckie water run and more. We’ve now served 12 families through our Parent Care Workshop. This may seem like small potatoes, but to me it means the world to touch even just one family.
And we're not stopping. Next year, I will run 1,470 miles around our home state of Colorado to raise more funds and to bring our events to communities all over the state. The plan right now is to run 40 to 60 miles per day, and my hope is to start in early July and run for a month straight, in order to be back home before school starts.
All of the funds raised will go towards expanding our work. We’re shopping for the property we need to develop a permanent, adaptive resource center for micropreemie families where they can feel at home. We’re creating online content so that the parents who attend our workshops can continue to work on their healing afterward. We also want to build a national network, so that our programming can reach families far beyond our home state of Colorado.
My journey through motherhood has been full of surprises, to put it mildly. From finding out I was having twins halfway through my first pregnancy, to everything we overcame with Zev, to welcoming our fourth son, Van, who came perfectly on time, I've embraced every part of it. That's what I hope parents take away from our story: There's always light even in the darkest moments.
At 4those, we aim to stand in the darkness with NICU families and hold the light until they can see it themselves. And it's not just because our son survived. We are so lucky that Zev's only limitations now are his glasses and his inhaler. But that day when we were given a final choice, we didn't know what Zev's future would hold. Whatever experience parents have with their premature babies, we're there to hold the grief and the glory in the same hand.
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