Leia's Journey

Leia Chen (a.k.a Tutu) was born on February 2, 2024, at Overlake Hospital. From the moment she arrived, she brought immense joy and love into our lives. Her sparkling eyes and sweet smile quickly made her the center of our world. Despite some challenges during the pregnancy, Leia proved to be a strong and determined baby.

​

For the first month, Leia thrived, hitting all the usual baby milestones. She was a happy and healthy baby, and we cherished every moment with her. However, around the end of March, we noticed that Leia’s skin had become jaundiced. Concerned, we visited her pediatrician, which led to a series of tests that indicated something was wrong with her liver.

​

In late March, Leia was admitted to Seattle Children's Hospital. The doctors discovered that she had severe liver issues, but the exact cause remained unclear. Her condition was critical, and she was placed in the Pediatric Intensive Care Unit (PICU). This was the beginning of a difficult journey for Leia and our family.

 

Despite the severity of her condition, Leia’s spirit remained unbroken. She underwent countless tests and treatments, and each time, she showed incredible resilience. The PICU team provided exceptional care, ensuring Leia was as comfortable as possible. The liver team and PICU team worked tirelessly to stabilize her condition and find a suitable treatment.

​

In early April, it became evident that Leia’s liver was failing, and she was listed for a liver transplant. The wait for a suitable donor was agonizing, but on April 15, we received the news that a match had been found. The following day, Leia underwent a successful liver transplant surgery. The procedure gave us hope for Leia’s recovery.

 

Post-surgery, Leia showed remarkable improvement. Her skin tone returned to normal, and she began hitting milestones again. The dedicated care from the nurses and therapists played a significant role in her recovery. They worked with Leia daily, helping her regain strength and ensuring she stayed engaged and happy.

 

Leia was a social butterfly, always captivating everyone around her. Even during her toughest days, she would light up whenever someone entered the room. Her big, bright eyes followed every movement, and her tiny hands reached out to anyone nearby. She had a unique way of making everyone feel special, and her presence was a source of joy and comfort to all who knew her.

 

However, in late May, Leia’s condition suddenly took a turn for the worse. Her liver function deteriorated rapidly, and she was once again placed in the PICU. Despite the best efforts of the medical team, including the introduction of new treatments, Leia’s condition continued to decline. On July 2, Leia experienced severe complications, and by July 3, we made the heart-wrenching decision to let her go. Surrounded by love, Leia passed away peacefully.

 

Throughout this journey, our emotions were a rollercoaster of hope, fear, and heartbreak. We struggled with uncertainty and constant worry about Leia’s health. Moments of improvement filled us with hope, only to be dashed by sudden downturns. We questioned everything, wondered if we had done something wrong, and felt the weight of decisions that no parent should ever have to make.

 

Despite the challenges, these five months with Leia taught us so much. We learned about strength, resilience, and the depths of love. Leia’s journey, though brief, brought out the best in us and those around us. The support and compassion from the doctors, nurses, and everyone at Seattle Children's Hospital made this difficult path a little easier to bear.

​

In her short life, Leia touched more hearts than we could have ever imagined. She was a fighter, a beacon of light, and a source of inspiration. We are eternally grateful to all who cared for Leia and supported our family during this challenging journey.​

​

Leia’s Lullaby

Social Butterfly
Won’t take your lead
She makes up her own mind
Give you a look, and she lets you know what she’s thinking
Use her voice for her opinions
She’ll show you a fighter

​

Have you seen her eyes?
They look like Mom’s as she watches us all go by
And her mouth like Dad’s
Lets out her voice that expresses where she’s at

 

Everyone’s wrapped around her finger
She’ll draw you in, and you cannot help but linger
Give you a look, and she lets you know what she’s thinking
Use her voice for her opinions
She’ll show you a fighter

 

This song is a tribute to Leia’s memory, celebrating her life and the immense love she brought into our lives. We are eternally grateful to all who cared for Leia and supported our family during this challenging journey.

​

Special Thanks

We extend our heartfelt gratitude to everyone who cared for Leia, including the entire PICU team, the liver transplant team, and the therapists who brought joy to her days. Your compassion and dedication made a profound impact on our lives, and we will forever be grateful.

​

A special thanks to:

• All PICU nurses

• Jill Cotton and all social worker team

• Dr. Emily Berkman and all PICU doctors

• Dr. Pamela Valentino

• Dr. Danielle Wendel

• Dr. Evelyn Hsu

• Dr. Katelyn Saarela

• Dr. Patrick Healey

• Dr. Yong Kyong Kwon

• Dr. Patrick Rowland

• Anna Weissman, Christine Lundberg, and all liver team

• Emma Kennedy

• Megan Mahoney

• All SCH doctors, nurses, and therapists took care of Leia.