"You never think you're gonna have the sick kid," the baby's father said while speaking to local outlet KTIV
Credit: GoFundMe
NEED TO KNOW
- A Nebraska baby named Millie has survived a rare condition called Turner syndrome
- The syndrome typically carries a 2% survival rate among unborn babies
- Now 5 months old, Millie’s parents call her a “miracle,” though acknowledge that she still has a number of health challenges ahead
A baby girl in Nebraska has beaten overwhelming odds after being diagnosed with a rare genetic condition that only 2% of unborn fetuses survive.
Millie Dwyer was born via C-section in January after doctors discovered she had hydrops fetalis, a potentially life-threatening condition that causes abnormal fluid buildup in a baby's body, according to KTIV.
It turned out the condition was caused by Turner syndrome, a genetic disorder that affects females and occurs when one of the child's X chromosomes is either missing or partially missing.
Turner syndrome results in miscarriage or stillbirth about 98% of the time, according to the Turner Syndrome Foundation.
Credit: GoFundMe
“Something I never thought would happen to us,” Dylan Dwyer, Millie's dad, said while speaking to the outlet.
“So when she was in the womb, she had a cystic hygroma behind her neck and that kind of migrated to her stomach,” Tayla Schager, Millie's mom, added.
Millie's bowels then perforated before she was born, causing her stomach to swell.
“They drained 100 milliliters out of her stomach at first. They could have gone more than that, but that could have sent her body into shock ultimately,” Schager explained.
After Millie was born, her health challenges continued.
The infant's heart nearly stopped when she was just 2 weeks old. She ultimately spent 115 days in the neonatal intensive care unit (NICU) at a hospital in Omaha before finally being discharged home.
Millie's father said that while his family never anticipated her many health challenges, they are taking things one day at a time.
"You never think you're gonna have the sick kid, but it just gets thrown at you, and you just gotta figure it out day by day and here we are, five months later," Dylan said.
Her mother added that Millie has defied so many odds.
“We're very lucky to have her. She's really a miracle baby,” Tayla said.
"She's playing with her toys. She gets so excited. You smile at her, she smiles back. She coos just like a normal baby," she added.
Tayla posts regular updates about Millie's condition on Facebook, recently sharing that the infant has been eating more food by mouth instead of via her feeding tube, and that she has graduated from the first percentile to second percentile for weight for her age.
Still, the family expects to face more challenges ahead.
People with Turner syndrome typically experience a number of health issues as they age, including slowed growth, cardiac issues and infertility, per the Mayo Clinic.
Family friend Tonya Kramer created a GoFundMe to help Millie and her parents as they navigate the road ahead.
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“With prolonged NICU care, travel to Omaha, lodging, time away from work, and ongoing medical expenses, the financial burden on Millie's family is significant,” Tonya wrote on the fundraising page.
“Any donation, share, or prayer helps lift some of that weight and allows Dylan and Tayla to focus on being there for Millie and their family,” she added.
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