Continued Cardiac Care Helps Meilani Thrive After Tetralogy of Fallot Repair

When Ashley heard that her newborn daughter, Meilani, had a complex heart condition, it came as a shock. Within the first hour of her birth, it was clear that something was wrong. Meilani appeared blue and struggled to eat: all signs she wasn’t getting enough oxygen. 

The care team at their suburban hospital quickly recognized the severity of her condition and transferred Meilani to the Heart Center at Ann & Robert H. Lurie Children’s Hospital of Chicago. There, an echocardiogram revealed her diagnosis — Tetralogy of Fallot and pulmonary atresia with discontinuous pulmonary arteries.

What is Tetralogy of Fallot? 

Tetralogy of Fallot is a severe, complex combination of heart defects that restrict oxygen-rich blood in the body. Meilani’s heart did not have a connection between the right ventricle (RV) and the pulmonary artery (PA), meaning there was no normal pathway for blood to reach her lungs. In addition, the arteries supplying each lung were not connected, making it even harder for her body to receive enough oxygen.

Continued Complex Congenital Heart Care

Meilani underwent a shunt operation as a newborn to establish a stable source of blood flow to her lungs. In her first few years of life, she had two subsequent open-heart procedures and two additional cardiac catheter procedures. One of these surgeries involved placing a bioprosthetic conduit — a tube-like structure with a valve — to establish a connection between the right ventricle and the lung arteries. 

Now, as an 11-year-old, Meilani doesn’t remember the surgeries she endured as a baby. She does, however, remember the care her heart team provided at follow-up appointments. Over the years, Meilani returned regularly for medical imaging and monitoring. 

“The care that they give, the patience they have, the dedication — everyone here has been nothing but great,” Ashley said. “I always say, it is scary, but it's like a home away from home.”
 
As Meilani continued to grow, it became clear it was time for her conduit to grow with her. Meilani and her family knew this would eventually be required. In April 2026, she returned to Lurie Children’s for a follow-up surgery to replace her original bioprosthetic conduit with a larger tube. Cardiovascular-Thoracic Surgery Division Head Dr. David Winlaw surgically placed the new bioprosthetic conduit to match her growing anatomy.
 
Just one week later, Meilani was back in school and asking her heart team for the go-ahead to attend a trip to the Field Museum with her class. She was able to experience all the exhibits alongside her classmates. 

“She is resilient, strong and independent,” Ashley said. “No matter the situation, she always has a smile.” 

In her free time, Meilani loves skateboarding. Her style and personality shine in every interaction, sporting a beaming smile and arms full of handmade bracelets. When she grows up, Meilani said she wants to be a Child Life Specialist. Child Life Specialists help children and families cope with the stress of illness and hospitalization by providing education, emotional support and age-appropriate activities. 

“I want to help kids like me,” Meilani said. 

Looking Ahead: Advancing Multidisciplinary Heart Care 

In the future, Meilani will need another procedure to replace her conduit. In the years leading up to it, the Heart Center team looks forward to advancing her care even further.  

“We are constantly looking for ways to enhance treatment for patients like Meilani,” Dr. Winlaw said. “We are proud to advance 3D imaging techniques that enhance surgical planning, alongside research into bioengineered solutions for RV-PA conduit replacement.” 

Collaboration with Dr. Matt Crago at Northwestern Medicine’s Louis A. Simpson and Kimberly K. Querrey Biomedical Research Center will help pioneer this research. Additionally, the creation of Lurie Children’s new Pulmonary Artery Reconstruction (PAR) program and the expertise the team brings will provide even more possibilities for patients like Meilani. 

“Patients will have access to deeper expertise and fewer future interventions,” said cardiologist Dr. Joshua Robinson. “It’s wonderful to see the results of medical innovations with patients like Meilani. From a developmental and emotional standpoint, she really is thriving.” 

Ashley said that the trust she feels in the expertise of Meilani’s care team has been a constant comfort. 

“Whenever she needs to go in, they always say, ‘We're gonna take real good care of her,’” Ashley said. “And I really believe that they do.” 

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