Any parent who has ever lost a child will say it’s the hardest thing anyone could ever go through — something you never really get over. Chelsea and Doug Spoelker will say as much.
The couple’s second daughter, Stella, passed away at 39 days old. In the face of harrowing tragedy, they carry on her legacy with a foundation named in her honor, The Stella Effect, which helps families who share the Spoelkers’ experience.
Stella was born with Trisomy 18, a third 18th chromosome. Trisomy 18 is a relative of Down’s syndrome (Trisomy 21), but rarer and generally more severe. Trisomy 18 babies who make it to birth experience developmental issues of both the mind and body, depending on how many cells in the body carry the extra chromosome.
“It effects kids in all different ways,” says Chelsea, a Columbia native better known to this readership by her maiden name, Luckey. “It usually effects the brain, gastrointestinal, the heart, the lungs. It can impact their whole body, depending on what kind they have.”
Trisomy 18 occurs in one in 7,000 live births and one in 2,500 pregnancies.
“Stella was our second child, and we didn’t find out anything was wrong until our 20-week anatomy scan,” Chelsea explains. “They saw a couple anomalies, we got testing done, and it came back a week later that we needed a follow-up. They were telling us the whole time no big deal, this is fine, it’s probably nothing, and then we came back and she had Trisomy 18.”
Chelsea and Doug, like most people, had never heard of Trisomy 18.
“I actually asked if it was Down’s syndrome, which would have been a better outcome,” Chelsea says. “We learned that she might never walk or talk, although some of our kids learn to communicate, or walk with a walker, or feed themselves. We learned that more severely, a lot of our kids do pass away either in utero or after birth if they are not given interventions.”
Almost immediately after the diagnosis, doctors urged the couple to terminate the pregnancy, which they adamantly opposed.
“Even once we told them no, at 32 weeks pregnant, I had one specific doctor who never did stop trying to get me to terminate the pregnancy and did not respect our wishes at all,” Chelsea says. “At this point, we were at Norton Children’s Hospital in Louisville and kind of fighting for ‘fair care,’ which is what the terminology is. We were calling hospitals all over the country, talking to cardiologists across the country, like, ‘Would you perform surgery on our child?’”
Despite a disheartening response, the couple found a taker in Cincinnati Children’s Hospital.
“It was kind of crazy because everything else looked so healthy with her, and they wouldn’t even consider doing this for us,” Chelsea says. “We eventually got with a cardiologist in Cincinnati, and once we moved, it was like a night-and-day difference in our experience. They treated her like a human, called her by name, they didn’t constantly push us to terminate, and they just showed so much compassion. We felt very loved and taken care of.”
Doctors induced labor on Nov. 10, 2019, at nearby Good Samaritan Hospital. Stella showed the same resilience in life that her parents displayed in finding doctors to care for her.
“She was such a fighter, doing so well — it’s kind of unheard of for our kids to come out and be doing so well, and they were very quickly talking about us going home with her,” Chelsea says. “We were living at the Ronald McDonald House, so it was awesome to spend so much quality time with her. It was amazing, beautiful memories that we will cherish for the rest of our lives. We did our best to do a lot of memory-making and really treasure that time.”
While Stella’s hopes looked promising, she never did make it home. The day before she passed away, Stella’s older sister, Adelaide, 2 at the time, got to visit her baby sister.
“We had this photo shoot thing, and it was really weird,” Doug says of the experience. “We got a bunch of pictures with the whole family the night before she passed away.”
Chelsea, devout in her faith, believes God told the family to take the pictures, make the memories, because time was running out.
“I’m religious, and I had an intuition that we needed to get these photos,” Chelsea says. “To this day I believe that was because someone much bigger than us knew she was going to be gone and knew we would need those photos to heal and get through the rest of our life.”
Doctors would later explain that the human heart has “plumbing and electricity” and that Stella’s electricity, or rhythm, was off. Stella suffered from an arrhythmia that had not been detected.
“She had an arrhythmia, and the virus, and she had a cold,” Doug says. “It was just a snowball effect of her battling so much.”
“She should have been on the cardiac floor,” Chelsea adds. “Now, because of Stella, they require all their nurses to have experience with heart babies. They just didn’t catch her arrhythmia.”
Unsurprisingly, the Spoelkers describe the day Stella died as “the hardest day of our life,” but still a memory they will treasure forever.
“Losing a child is something no one should have to experience,” Chelsea says, “but to me, it was kind of beautiful, too. That comes back to my faith and what I believe happens after death. We got to do so much to love on her that day, and I’ve never felt God’s presence more than I did at that moment. We know she’s in heaven, and that does feel good — this unexplainable feeling of peace and knowing that she was OK.”
Stella’s entire extended family rushed to the hospital the day she passed. The chaplain prayed over her and affirmed her baptism. Stella was dressed in a baptismal gown sewn by her two grandmothers, made from Chelsea’s wedding dress.
“We put it on her and everybody got to come say goodbye and spend time with her,” Chelsea remembers.
Suddenly, the life the Spoelkers had been living was over. The family packed up their room at the Ronald McDonald house and headed home, attempting the impossible task of resuming their previous lives.
“It’s literally impossible to go back to a regular routine,” Chelsea says. “You have a whole part of you just gone, and that never leaves, you just learn how to deal with it. I actually quit my job and started my master’s in counseling, and that’s partly due to all the counseling I got whenever we found out Stella’s diagnosis and how much it saved me.”
Chelsea credits Stella with “throwing my entire life off track” and setting her on a new path.
“You learn to live with grief and joy at the same time,” she says.
While Stella no longer lives on this earth, her parents decided to continue her lecacy with a nonprofit organization. The Stella Effect aims to help families in the same situation the Spoelkers once found themselves in.
“We help celebrate their birthdays, both our living children and our children who have passed away,” Chelsea says. “We help families move for fair care, we help people who have to move across the country or who are struggling financially, and we advocate and raise awareness that our kids have value no matter how long they live.”
Their lives permanently changed, Chelsea and Doug relish the memories they made during their 39 days with Stella. Chelsea remembers Adelaide getting to hold her baby sister, and watching Christmas movies at the hospital while she rocked Stella.
“Seeing Adelaide with her, that’s the best thing I have ever gotten to see or experience,” Chelsea says.
Doug remembers late nights with Stella pressed close to his chest, watching college basketball while Chelsea caught up on sleep. He says she was a Louisville fan.
“I still think about it,” Doug says.
The family is thankful for the support they have gotten since the day they were diagnosed, and Chelsea says she’s forever grateful for how her hometown responded.
“The way the Columbia community supported us throughout the whole thing has been amazing to see,” she says.
To do your part for families like the Spoelkers, visit The Stella Effect. The couple says no donation is too small.
“Even $5, that can be huge,” Chelsea says. “The statistics say kids with Trisomy 18 don’t usually reach their first birthday, but the statistics are part of the whole issue and the whole fight. These are the statistics as of right now, but these are changing quickly because doctors are realizing that with interventions, the statistics can be a lot better.”