Colorful kids’ toys line Lauren and Matthew’s living room in Omaha. A small plastic jungle gym sits in their dining room and a booster seat is parked at the kitchen table.
It’s all for their oldest son, who’s just shy of two years old and is “as close to a perfect child as you can get,” Matthew said.
Upstairs in their bedroom, there’s a special place for their second son.
A blue teddy bear – named Blueberry – sits on a shelf, holding a pewter heart about the size of a baseball. It carries the ashes of their son Skye, who was never born but grew for 16 weeks during pregnancy. The tiny urn doesn’t always stay on the shelf.
“Any time I get to take a nap, I’ll bring Skye with me. I’ll have him on my lap when we’re watching TV,” Lauren said. “On the days where I’m thinking about him and missing him a lot, I’ll just sit and talk to him.”
The Midwest Newsroom agreed to give Lauren and Matthew pseudonyms and anonymity because of the sensitive nature of their story.
In February, when Lauren and Matthew learned she was pregnant for a second time, they were overjoyed. They already knew how much they loved their first son and how much they loved being parents. They had planned their nursery around having more than one child and dreamed of pushing a double stroller around the zoo.
That excitement turned into heartbreak when a complication arose during the pregnancy. The couple had to make a choice they never wanted to make, and Nebraska’s 12-week abortion ban limited their options to access abortion. So they had to travel to Kansas.
Nebraska, like many other states, has further restricted abortion since the Supreme Court overturned Roe v. Wade in 2022. Iowa’s supreme court recently ruled in favor of a six-week ban, replacing the previous 22-week law. Abortions are banned in Missouri with very few exceptions.
Cytomegalovirus
In the beginning of her pregnancy, Lauren felt like it would be “smooth sailing,” just like they’d had with their first son. She was tired, but that felt typical. Then after her 8-week appointment, she noticed a rash that looked a little like chickenpox.
“When the spots came up, they were really strange. And I just had a really bad feeling about what they meant.”Lauren, Omaha mother
“When the spots came up, they were really strange,” Lauren said. “And I just had a really bad feeling about what they meant.”
That bad feeling came true when she tested positive for the one thing her doctor was really concerned about – a virus called cytomegalovirus or CMV. That diagnosis came at 12 weeks.
While CMV is a common virus that’s often mild for adults, it can be dangerous when women contract the virus during their pregnancy and it’s passed to the fetus. It’s the most common infectious cause of birth defects in the United States and, according to the Centers for Disease Control and Prevention, one out of every 200 babies is born with congenital CMV.
“It can cause really severe birth defects or anomalies and neurologic conditions after delivery,” Emily Patel, a maternal-fetal specialist at Methodist Health System in Omaha, said. “It can also cause stillbirth typically in the early to late third trimester, as well.”
Patel wasn’t Lauren’s doctor, but she’s familiar with her case and has worked with patients in similar circumstances. She said CMV is especially cruel because it’s nearly impossible to predict what will happen.
Ultrasound scans might confirm the virus has infected the fetus, but Patel said the absence of ultrasound findings doesn't rule out the possibility of severe health consequences.
“Even after birth, there can be complications and impacts years down the road,” she said. “It is one of those viral infections that can be really tricky to counsel patients on.”
'Hardest week of our lives'
Lauren was desperate for answers. She read medical journals, scanned trials from the United Kingdom and reviewed observational studies from Italy. They all pointed in one direction: uncertainty.
“I just wanted some sort of solution, like ‘Here’s the treatment that we can do and everything’s going to be fine,’” Lauren said. “I just kept waiting for that. And it doesn’t exist.”
The couple felt like they were stuck in a nightmare.
They were weighing their hopes for a potentially healthy baby against possible problems like hearing and vision loss, developmental delay or even pregnancy loss.
Their doctors couldn’t offer them any guarantees.
“It was the hardest week of our lives, was having to talk about this,” Matthew said. “Our doctors answered all of our questions and gave us as much time as we needed. But nobody could make this decision for us – a decision we never wanted to make.”
Lauren said she wasn’t worried about loving her son if he was disabled – it was the other possibilities that kept her up at night.
"I couldn’t take the gamble that he would die in my arms shortly after birth, I couldn’t take the gamble that he would have a lot of pain and suffering in his life."Lauren, Omaha mother
“Maybe it would have been easier to just keep on course and roll the dice,” she said. “But I couldn’t take the gamble that he would die in my arms shortly after birth, I couldn’t take the gamble that he would have a lot of pain and suffering in his life.”
In the end, the viral implications for the baby’s health and Lauren’s fertility were too high. She said deciding to end the pregnancy was the hardest decision of their lives. Lauren and Matthew said they know others may have made a different decision for their family.
“This was never something we would have chosen if we felt like we had any other option that was best for our family,” she said. “This was a set of circumstances that happened. And we have to move in one path or another.”
They made a final ultrasound appointment at 16 weeks, 4 weeks past Nebraska’s abortion ban. To Lauren, it was an opportunity to say goodbye.
The hospital helped them make an appointment in Kansas – where abortions are allowed until 22 weeks – but Lauren said she still felt alone during unimaginable pain.
“Our doctors were incredible and did everything they could possibly do to give us information and support,” she said. “But it still felt like you’re being abandoned by the medical system, you’re being abandoned by your government, you’re being abandoned by your health insurance.”
Lauren and Matthew said going out of state for the abortion appointment piled on even more stress and isolation. They needed to find childcare, book a hotel and drive the six-hour round trip to Overland Park, Kansas.
“Abortion bans aren’t helping pregnancies and aren’t helping children,” Lauren said. “In this case, what we needed was more science.”
The couple learned about the risks of CMV for the first time at Lauren’s diagnosis. She said the virus should be included in routine pregnancy screenings for things like chickenpox, rubella and syphilis. To her, babies should be tested for the virus and women should be screened to see if they’re at risk for a new infection.
“Prevention is maybe not entirely realistic, but you can try to reduce your risks,” she said. “Living in the dark without this knowledge is not helping anybody and it certainly did not help us.”
Skye's purpose
Despite her painful experience, Lauren said she feels grateful to have been able to make a choice about what was best for her health and her family.
“My doctors gave me the incredible gifts of a diagnosis, patience and kindness. The voters of Kansas gave me the gift of autonomy,” Lauren said. “And although bringing home Skye in an urn is not the way I wanted to bring him home, he’s still home with us. And his life still has a purpose.”
When Lauren misses Skye, she pictures the place that inspired his name. The couple named him after the Isle of Skye in Scotland, where they visited years ago. It’s a rugged island with green grasses, jagged rocks and rushing winds.
“We want his spirit to be as wild and free and peaceful as the Isle of Skye,” she said. “Where he can be happy and at peace without any pain, without any suffering. Only love.”
This story comes from the Midwest Newsroom, an investigative journalism collaboration that includes IPR, KCUR 89.3, Nebraska Public Media News, St. Louis Public Radio and NPR.
Do you have a tip or question for us? Email midwestnewsroom@kcur.org.
