Lifestyle Health Parents of Baby Born with Rare, Often Fatal Dwarfism Want to Tell Other Families 'There Is Hope' "We have big dreams for her," says Brittany Kuper of her 18-month-old daughter Esther, who has thanatophoric dysplasia By Wendy Grossman Kantor Published on April 27, 2022 02:04 PM Share Tweet Pin Email Esther Kuper. Photo: Courtesy Kuper Family When Brittany and Grant Kuper learned they were expecting, they decided to keep a few things a surprise, like waiting to find out the baby's sex. But at the 20-week anatomy scan, the doctor had different news: the baby had dwarfism. "It was really hard," Brittany Kuper, 32, tells PEOPLE. "We cried a lot and it was tough because every parent has a vision and a dream for what their family will look like and that just changed. It completely changed that day." A month later, the Kupers learned that their baby, a girl, had a genetic disorder called thanatophoric dysplasia, a very rare form of dwarfism, diagnosed in one in 50,000 births. "It is a really, usually devastating, diagnosis," Dr. Tara Zamora, a neonatologist and the medical director of the level four NICU at Children's Minnesota in Minneapolis, tells PEOPLE. "It's super rare." "Typically, these children are born with very shortened bones, [and a] small chest. It affects the spine and the skull and makes it really hard to breathe and kind of squeezes those internal organs," Zamora says. The disorder typically has a grim prognosis — the name literally translates from Greek as "death bearing" — and many babies are stillborn, or die shortly after birth, Zamora says. "We accepted the fact that we were going to be planning a funeral for our daughter in a few months," Brittany, who previously worked in vocational ministry, says. "We were devastated." Brittany and Grant Kuper. Lydia Nicholson/Two Pines Photography It was also sadly a familiar prospect, as six months earlier, Brittany's sister had a baby girl, Shadow Rose Billeter, who was stillborn at 36 weeks with the umbilical cord around her neck. "It was gut wrenching," says Grant, 31, a civil engineer in Fargo, North Dakota. "We had seen what a funeral would look like for an infant." Googling the diagnosis, Brittany's sister found a Good Morning America article about another baby girl born with the thanatophoric dysplasia who was over a year old. Brittany reached out to the family on social media, and they connected her with other families of babies with the disorder. "There was hope that Esther could survive," Brittany says. Still, the couple decided not to decorate their nursery — just in case. They also didn't have a baby shower, because they didn't want to come home from the hospital without a baby to a room full of gifts. Instead, they invited 100 friends to a nearby park when Brittany was 31 weeks pregnant to celebrate their daughter. "We had a pre-birthday party because we didn't know if she'd ever get to experience a birthday party," Brittany says. On October 28, 2020, Esther RoseLea Kuper was born via a scheduled c-section at 37 weeks. Esther Kuper at one week old. Courtesy Kuper Family "Knowing that we didn't know how long Esther would live, they let both of our moms in the operating room," Brittany says. "That was just a really, really special day for us." She was born at 7:31 a.m., weighing 6 pounds, 11.9 ounces. Brittany got a quick glimpse of her daughter before Grant accompanied the newborn to the NICU, where Esther was placed on a ventilator. "It was scary for me," Brittany says. "I didn't know if the next time I saw her she'd be alive, and Grant had to leave me and go be with her." 7 Little Johnstons on Living with Dwarfism: 'There's No Woe-is-Me Attitude' But the couple says that Esther was born a fighter. She spent two weeks in the NICU at the hospital in Fargo before she was transferred to Children's Hospital in Minneapolis. At Children's, Esther was treated by a medical team that included Zamora, along with neurosurgeons, general surgeons, endocrinologists, immunologists, pulmonologists and cardiologists. During her nearly 11 months in the hospital, Esther went to the operating room 10 different times for 34 different procedures, five of which were surgeries. She battled pneumonia and meningitis twice. But almost a year later, on Sept. 27, 2021, Esther was finally able to come home. Brittany, Grant and Esther Kuper at home. Michelle Stenvold The couple invited friends and family to a costumed first birthday party at their home in Moorhead, Minneapolis. "At six months old, we were told she probably wouldn't be home for her first birthday. So the fact that we got to celebrate her first birthday at home was a huge deal," Brittany says. Now 18 months old, Esther weighs a little over 13 lbs., and she's doing well, says Zamora. "One of the most inspiring parts of caring for Esther has been the fact that this family really celebrates and just enjoys every moment with this child," she says. "She's just kind of this shining light, and it's just an amazing way to live, and amazing thing to pass on to your child." RELATED VIDEO: Mom of 2 Kids with Rare, Deadly Disease Opens Her Home to Nepalese Man with the Same Condition As for Esther's prognosis, Zamora can't say. "That's tough. This is such a rare diagnosis, and there are children who have gone home and are managed with a lot of medical help. It's not a curable diagnosis. And so I think we're still learning what the possibilities are." "It used to be something that it was fatal and that was it," Zamora adds. "Now, with advances in medical care, to get these kids home and managed, we're learning what this looks like. But certainly she's going to need lots of ongoing care and there's always risks of complications along the way. We see a world of possibility, but it's just a lot of unknowns still." At home with her family, Esther loves staring at Christmas lights, her two labradoodles Dexter and Winnie and watching American Idol with her mom. "Her smile takes up her entire face," Brittany says. "She's filled with joy, and she just brings joy to anyone around her. But she also has a sassy side-eye that she gives people when they're doing something she doesn't want them to do." Esther Kuper giving her parents a smile. Courtesy Kuper Family Her dad also loves her smile. "She smiles throughout the day, almost every day," Grant says "Being a parent to a kiddo that has some complex medical needs, when she smiles, all that just kind of melts away. She's just got a big old, cheesy grin." Esther is still on a ventilator and eats via a gastrostomy tube in her stomach. She communicates via switches. "We're hopeful now that she can just focus on just growing and developing and enjoying life," Brittany says. "We have big dreams for her." And the couple is sharing Esther's story on Facebook to give hope to other parents that this diagnosis is no longer a definite death sentence. "We want other families to know that there is hope," Brittany says. "It's not easy, and it doesn't mean every kid will survive if you pursue intervention, but it's not as grim as a lot of the outdated research makes it look."