When Brittany and Grant Kuper discovered they were expecting, they opted to keep some things a surprise, including the baby’s sex. However, their anticipation took an unexpected turn at the 20-week anatomy scan when the doctor delivered different news: their baby had dwarfism.

“It was incredibly tough,” recalls Brittany Kuper, 32. “We shed a lot of tears because every parent envisions a certain future for their family, and that vision was completely altered that day.”

A month later, the Kupers received further challenging news: their baby, revealed to be a girl, was diagnosed with thanatophoric dysplasia, an exceedingly rare form of dwarfism occurring in just one in 50,000 births.

Dr. Tara Zamora, a neonatologist and the medical director of the level four NICU at Children’s Minnesota in Minneapolis, explains, “It’s an often devastating diagnosis. It’s exceptionally rare.”

“Typically, these children are born with extremely shortened bones, a small chest, affecting the spine and skull, making breathing difficult and compressing internal organs,” Zamora elaborates.

The prognosis for this disorder is typically grim—the name itself, translating from Greek as “death bearing,” underscores its severity. Many babies with this condition are stillborn, or they pass away shortly after birth.

“We had come to terms with the idea that we might have to plan a funeral for our daughter in a few months,” shares Brittany, who previously worked in vocational ministry. “We were devastated.” This sorrow was compounded by a previous tragedy, as six months earlier, Brittany’s sister had a stillborn baby girl named Shadow Rose Billeter at 36 weeks, due to the umbilical cord being wrapped around her neck.

“It was heart-wrenching,” Grant, 31, a civil engineer in Fargo, North Dakota, reflects. “We had already seen what a funeral for an infant would look like.”

Searching online, Brittany’s sister stumbled upon a Good Morning America article about another baby girl with thanatophoric dysplasia who had survived past a year. This glimmer of hope propelled Brittany to reach out to the family via social media, connecting her with other families facing similar challenges.

“Learning about Esther’s survival gave us hope,” Brittany affirms.

Despite this hope, the couple made cautious decisions, opting not to decorate the nursery and forgoing a baby shower. Instead, they hosted a gathering of 100 friends at a nearby park when Brittany was 31 weeks pregnant to celebrate their daughter’s impending arrival.

“We threw a pre-birthday party because we weren’t sure if she’d ever get to experience a birthday,” Brittany explains.

On October 28, 2020, Esther RoseLea Kuper entered the world via a scheduled c-section at 37 weeks.

“Given the uncertainty surrounding Esther’s lifespan, both of our moms were allowed in the operating room,” Brittany shares. “It was an incredibly special day for us.”

Brittany caught a brief glimpse of her daughter before Grant accompanied the newborn to the NICU, where Esther was placed on a ventilator.

“It was frightening for me,” Brittany admits. “I didn’t know if the next time I saw her, she’d still be alive, and Grant had to leave me to be with her.”

“We want other families to know that there is hope,” Brittany emphasizes. “It’s not easy, and pursuing intervention doesn’t guarantee every child’s survival, but it’s not as bleak as some outdated research may suggest.”