Stella

Early interventions help Super Stella defy expectations

Like many first-time parents, Summer and Travis rode a rollercoaster of emotions during the first few months of their baby’s life. Excitement, joy and unconditional love intermingled with sleep deprivation and the steep learning curve that goes along with caring for one’s firstborn. 

That time of newness and discovery held an extra dimension of uncertainty for the family – one that began during Summer’s pregnancy when a routine prenatal ultrasound at 20 weeks revealed that their daughter Stella’s brain wasn’t forming as expected.

A fetal MRI soon confirmed that their daughter had agenesis of the corpus callosum (ACC), a rare birth defect in which the critical tissue that connects the two hemispheres of the brain is either partially or completely missing.

The corpus callosum acts like a telephone line allowing the two sides of the brain to send messages back and forth. The breakdown in communication that results from ACC places children at risk for a wide range of health and developmental issues.

Summer and Travis worked to find some equilibrium even though their doctors could not predict how Stella would be affected. Would she have mild neurological issues and a fairly typical life? Significant issues that would require lifelong care? Something in between?

“From the time we found out, we did our best to educate ourselves and prepare for Stella’s arrival,” Summer said. “But what would this look like for her? We really just had no idea.”

Finding the care Stella needed at Children’s Health  

Stella was born on New Year’s Day 2023 and her parents immersed themselves in getting to know their little girl, enjoying her personality, and learning to read her cues.

At around 7 weeks, they noticed some unusual movements. The first-time parents were unsure of what they were seeing, but Summer’s mom, Donna, realized it could be a seizure. Their pediatrician advised them to take Stella straight to Children’s Health℠ in Plano, a top-ranked children’s hospital that offers comprehensive care for almost every pediatric health condition and has one of the best pediatric epilepsy centers in the country.  

Over the next few months, Stella was hospitalized four times as the Neurology and Genetics teams at Children’s Health worked to calm her seizures and identify their cause. Though the family’s journey felt overwhelming at times, the care they received from everyone at Children’s Health gave Summer and Travis comfort and confidence that they are in the right place.

“Being in the hospital with a newborn is terrifying. Seeing her have to go through so many different tests and procedures was heartbreaking, but we knew we had made the first right step by getting her the best care. I can’t say enough about the team at Children’s Health. Especially the nurses. They knew when to step back and let us take care of Stella and when to step in,” Summer said. “They also knew what to say. One of the nurses told us ‘Nothing I can tell you in this moment will make this go away, but I can tell you I will be here with you all night.’ That really stuck with me, and I think about that when comforting others going through a hard time.”

Almost immediately after her first hospitalization, Stella started in the Early Childhood Intervention Program (ECI) at Children’s Health where she receives food therapy and vision care. She also receives private physical therapy through Children’s Health. 

“We’re so glad we went to Children’s Health right from the start. They were amazing at pinpointing the neurologist who could best care for Stella’s specific needs. Because everyone there only works with kids, they have specialized skills and experience,” Summer said. “Even placing an IV can be tricky for a small baby. But Children’s Health always had someone who knew how to do it just right.”

Grounded in the present and hopeful for tomorrow 

When Stella was about 5 months old, doctors identified an extremely rare mutation of the TUBA1A gene as the root cause of Stella’s condition. Fewer than 200 people around the world have this mutation. For Stella, this mutation causes ACC, global development delays, seizures, and visual Impairment due to brain malformation. While the list of challenges Stella faces is long, the family was relieved when brain scans at 9 months didn’t show signs of some of the most severe brain malformations the TUBA1A mutation sometimes causes.

While Summer and Travis have a lot to manage, they are grounded in the present and hopeful for the future. 

“When you first get a diagnosis like this, it can feel like the end of the world. But it’s not,” Travis said. “We try to focus on where we are and not on what we can’t change. While we aspire for better things for Stella, we love her for exactly who she is.”

Stella, who celebrated her first birthday on Jan. 1, has started to hit milestones that once seemed out of reach. She is able to roll over, sit on her own, and is learning to stand with the help PT. Stella, who is starting to babble, regularly sees her neurologist at Children’s Health in Plano and continues with occupational and physical therapy.

Feeling blessed 

The family is grateful for the care of her clinical team and also for the donors who support pediatric research.

“Donors are so important. They help accelerate knowledge about how things like gene mutations affect a child’s development. When money is donated to study conditions that affect children, it raises awareness about their needs. We need stronger voices for them,” Travis said.

Above all, Travis and Summer feel blessed. 

“Stella is such a sweet baby and wakes up happy every day. She loves music and giggles all the time,” Summer said. “While she definitely has a lot of challenges ahead, she is incredibly determined and already showing great improvement. We don’t know what her future holds and if she will ever be able to walk, talk, or will hit traditional milestones.  But we are doing all we can to provide her with the best opportunities and love watching our strong baby girl write her own story while giving it her all. We are so very proud of her and can’t wait to see what our Super Stella will do.”

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