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.