Mom told baby daughter will never walk or talk—but she knows what to do

A mom from the U.S. was devastated when doctors warned her newborn daughter was unlikely to ever walk or talk.

But that didn’t stop her from trying.

Twenty-eight-year-old “Bambi,” who does not share her name publicly, told Newsweek that complications during birth left her daughter with a severe hypoxic ischemic encephalopathy (HIE) diagnosis.

HIE is a form of brain injury caused by a lack of oxygen to the brain around the time of birth.

Based on MRI scans and neonatal seizures observed shortly afterward, her daughter’s neonatal intensive care unit (NICU) team warned the family to prepare for significant developmental limitations.

“They couldn’t tell us exactly what her future would look like, but they could tell us what they believed was likely based on the information they had,” Bambi said. “They were trying to prepare us for what they believed was a realistic outcome.”

Later, another diagnosis added a new layer of complexity. Doctors discovered her daughter had pyruvate dehydrogenase complex deficiency (PDCD), a rare genetic metabolic disorder that affects how the body converts carbohydrates into energy.

Receiving that news was devastating and almost impossible for Bambi to process.

“I guess that’s just being thrown off the deep end of parenting,” she said. “You get horrible news, and then five minutes later someone needs your insurance card, and you realize you haven’t eaten since yesterday, and you have to make calls and let everyone else know what’s going on.”

The challenges were compounded by the timing. Her daughter spent two weeks in the NICU during the COVID-19 pandemic, and Bambi was often there alone.

Despite what doctors considered the most likely outcome, she refused to let a prognosis dictate her efforts.

“If somebody tells me my child has a 5 percent chance of doing something, I understand that means there is a 95 percent chance she won’t,” Bambi said. “But I’m also not going to make decisions based on the most pessimistic view of her future. I didn’t need to believe she was definitely going to achieve a particular milestone to want to find out.”

The family pursued every intervention they could access.

Early on, living in an underserved area made therapy difficult to obtain. Bambi turned to online resources, friends in education and, eventually, state intervention programs.

The parents drained savings to pay for therapy when insurance coverage ran out.

The work itself, Bambi said, was often far less glamorous than the milestone videos she eventually posted on TikTok.

“Before you get the big milestones in the video, there are months of working on weight shifting, trunk control, reaching across midline, tolerating a position, moving one foot correctly over and over again until something sticks,” she said.

Today, her now 5-year-old daughter receives multiple therapies and is participating in a clinical trial involving dichloroacetate (DCA), a medication designed to help regulate mitochondrial energy production.

Combined with a ketogenic diet, Bambi said the treatment has coincided with significant developmental gains.

“I don’t want the ending of this story to be, ‘Surprise, disability defeated!’ That’s not what happened,” she said. “She is still a disabled child with medical needs. However, she’s very happy, very opinionated, and relatively healthy. Still surprising us every day with new skills.”

For parents facing similarly daunting prognoses, Bambi said that unlikely doesn’t mean impossible.

“A prognosis is information, not an instruction to stop trying,” she said. “Read the research. Ask questions. Get second opinions when they’re warranted. Use the equipment. Change the goal when the goal needs changing, but don’t mourn your child and the future you expected for them so thoroughly that you forget they’re still right there.”

Contact Newsweek editors on this story: Sirena Bergman and Emma Lee-Sang