Baby With Rare Dwarfism Inspires Hope By Making It Well Past Her First Birthday

Mason Joseph Zimmer
baby with thanatophoric dysplasia sleeping next to dog
Facebook | Esther's Story: For such a time as this

Nowadays, there's quite the rigmarole that new parents go through when they're about to have a baby. But all of those appointments and screenings are conducted to ensure that there as few surprises as possible when that little one is born.

Because as unfair as it is when children must already deal with a life-threatening condition before they've even started living, their best chance at making it through is to give doctors an idea of what to expect before they're in the trenches.

But as dire as some prognoses can be, it becomes a little easier to shore up some hope when we hear of the multiple stories that have seen babies overcome seemingly impossible odds and survive to see their loving families.

After all, it wasn't so long ago that even premature babies had half the chance to survive that they do now.

And while one family had prepared for the worst before their daughter was born, the strength she's shown in fighting a frightening condition is now giving them hope for the future.

A month after a 20-week anatomy scan revealed that their baby would have dwarfism, Brittany and Grant Kuper were devastated to learn that they were actually dealing with a rare form of the condition called thanatophoric dysplasia.

woman putting finger in baby with thanatophoric dysplasia's hand at hospital NICU
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As neonatologist Dr. Tara Zamora told People, "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."

As a result, it's common for the one in 50,000 people diagnosed with this condition to be either stillborn or to die shortly after birth.

And this was particularly hard news for the Kuper family as they had attended a funeral for the stillborn daughter of Brittany's sister six months earlier.

woman kissing baby with thanatophoric dysplasia's head in hospital
Facebook | Esther's Story: For such a time as this

In her words, We accepted the fact that we were going to be planning a funeral for our daughter in a few months. We were devastated."

For this reason, the family opted not to decorate their daughter's nursery or hold a baby shower and instead invited 100 friends to a park for a pre-birthday party to celebrate the child.

But when her sister had alerted her to a family whose one-year-old had the condition, she found a new reason to hope that her daughter would be as fortunate.

And when Esther RoseLea Kuper was born via caesarean section on October 28, 2020, she confirmed that hope by proving to be a fighter right out of the gate.

baby with thanatophoric dysplasia sleeping next to dog
Facebook | Esther's Story: For such a time as this

She would spend 11 months at a children's hospital in Minneapolis, where she underwent 34 different procedures (including five surgeries) over the course of 10 different trips to the operating room.

But despite the fact that Esther also battled both pneumonia and meningitis twice in that time, she was found to be healthy enough to go home by Sept. 27, 2021.

Considering that there was a chance she wouldn't even make it to her first birthday, her family found it miraculous that she was able to celebrate it at home.

baby with thanatophoric dysplasia celebrating first birthday in old lady costume
Facebook | Esther's Story: For such a time as this

So as we can see, this big news prompted an all-out celebration with the Kupers inviting their friends and family to a costume party.

And while Zamora said it's hard to tell how life will go for Esther — who still needs both a ventilator and a feeding tube — the fact that's she's doing well at 18 months old is encouraging.

The Kupers also describe Esther as a joyful child with some infectious energy who loves staring at Christmas lights and has made fast friends with the family's two labradoodles, Dexter and Winnie.

baby with thanatophoric dysplasia laughing at home
Facebook | Esther's Story: For such a time as this

In Grant's words, "She smiles throughout the day, almost every day. 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."

h/t: People