A Story of Resilience: Silas Shares Journey With VACTERL Association

Eight-year-old Silas has been coming to Shriners Children’s Northern California for the past three years. Upon first glance, you wouldn’t know that this energetic, bubbly boy has fought for his life since day one.

Silas’ mom, Jesse, said she felt prepared for him to be born. His older brother was 2 at the time, and she thought she knew what to expect. She could not have prepared herself for what was to come.

Silas was born with VACTERL association, a nonrandom association of birth defects that affects multiple anatomical structures. No signs of VACTERL association were seen during Jesse’s ultrasounds, but when she went in for an emergency C-section, it became obvious right away.

The term VACTERL is an acronym, where each letter represents one of the common findings seen in affected children:

V: vertebral abnormalities
A: anal atresia
C: cardiac (heart) defects
TE: tracheal-esophageal abnormalities
R: renal (kidney) and radial abnormalities
L: limb abnormalities

“They wrapped him up, brought him over to me, let me kiss him, and then took him away,” Jesse said. “We waited over two hours for him, and I didn’t know what was wrong.”

Because ultrasounds didn’t pick up any signs for VACTERL, Jesse delivered Silas at a hospital that was not equipped to care for him when he was born. Just hours old, little Silas was rushed to a hospital in Orlando, Florida, over an hour away. His dad, Stanley, followed the ambulance, but Jesse had to stay and recover.

“I was healing and hormonal,” she said. “I tried my best to get out of the hospital as early as I could to get to Orlando to be with him.”

Jesse pushed through her recovery, and was able to get out of the hospital a little early. She had family drive her to Orlando and spent the next six long weeks in the NICU with Silas.

She found a doctor in Florida who specialized in VACTERL to get Silas an official diagnosis, then started researching places to get him the best care possible.

Moving to California – and Shriners Children’s

Jesse, herself a beneficiary of Shriners Children’s expertise, understood the importance of specialized care. Thus, the decision to relocate to California, where Shriners Children’s Northern California and UC Davis Medical Center stood in close proximity, was made. It was a strategic move, ensuring Silas could access the best care within driving distance of their new home. Since he had been in and out of hospitals his whole life, Jesse and Silas' dad wanted to make sure it was the best care possible.

When he was 5 years old, Silas began receiving treatment at Shriners Children’s Northern California. In the three years since then, he has received care from the urology, colorectal, pediatric surgery and orthopedics departments.

“Resources are naturally built in,” said Jesse. “It’s hard to absorb information sometimes, even as a parent, so there is always someone who will come in to explain it to Silas, and in a way that he understands. He gets to build a relationship with his doctors and the staff.”

As Silas's medical needs evolved, so did the care provided by his Shriners Children’s team. The seamless coordination between departments ensured that Silas received comprehensive care tailored to his unique medical diagnosis. Whether preparing for a full bladder reconstruction surgery or planning for a future procedure on his back, the collaborative approach among specialists ensured continuity of care and peace of mind for Silas and his family.

Yet, amidst the medical complexities, it was the genuine care and support from the hospital staff that left a lasting impact. From the compassionate nurses to the dedicated doctors, Silas and his family felt embraced by a community that understood their journey intimately.

“I want to give a huge shout out to all the staff,” said Jesse. “It’s always nice to have everyone he sees to have a smile, or something nice to say. It makes it not as scary for him.”

We’ve Got Your Back

Shriners Children’s Northern California’s wide range of resources and expertise is provided to patients and their families, regardless of the family’s ability to pay or insurance status. For children like Silas who have complex diagnoses and constantly need treatment, a hospital bill can be a huge financial burden for their family.

“I joke that he’s my million dollar baby,” said Jesse. “He’s had procedures done that weren’t medically necessary, but if we didn’t have insurance, we would’ve gotten a less effective or different treatment that wouldn’t have been as good for him. Not having to worry about cost is a huge factor. We can look at something and go, ‘This is what Silas needs, and we don’t have to worry about whether or not to get it for his quality of life.’”

Looking Towards a Bright Future

Today, as Silas approaches his ninth birthday, his journey continues – a testament to the resilience, determination and exceptional care provided by Shriners Children’s Northern California. His story is one of growth and transformation, marked by the unwavering support of his family and the compassionate care of the Shriners Children’s community. And as he faces the road ahead, Silas does so with courage, resilience, and the knowledge that his journey is a testament to the power of hope, love and exceptional care.

“I am amazed by how nice, warm and friendly he is,” said Jesse. “He was the right kid to have this diagnosis; he has the kindheartedness to face the challenges ahead.”