Positivity: Rib Implant Enables Little Girl to Live Normal Life

Five year-old Janey Rominski of Strattanville, PA is progressing nicely instead of hanging on for dear life because of titanium ribs:

Strattanville girl benefits from titanium rib implant

STRATTANVILLE - When 5-year-old Janey Rominski mentions her “pipes,” it’s not about her ability to talk or sing.

The pipes are her titanium ribs - a breakthrough implant procedure she underwent in 2004 to address a potentially life-threatening disease.

Janey, the youngest of four children to John and Mary Jo Rominski, has congenital scoliosis and Thoracic Insufficiency Syndrome.

She needed the surgery to help straighten out her spine and expand her chest cavity so she can grow properly.

The procedure - which was developed by a San Antonio, Texas, physician - will be performed on another young patient on the ABC “Miracle Worker” program scheduled to air at 10 p.m. Monday.

Janey was diagnosed with the condition on Sept. 23, 2002, at Erie Shriners Hospital.

Her mother said if left untreated it would force Janey’s body into the shape of a barrel until there was no more growth.

“She would eventually become oxygen dependent and have heart problems,” she said. “She had very little chance of survival.”

It was agreed the procedure “was what needed to be done,” Rominski said.

The implant device is called a vertical expandable prosthetic titanium rib and was introduced by Dr. Robert Campbell at the University of Texas Health Science Centre in San Antonio.

“This device would give her more room to develop her lungs and heart, plus it would stabilize her curve,” her mother wrote in a journal she keeps about Janey’s progress.

SCHEDULING SURGERY

Rominski said the family had to get past a number of hurdles before Janey was able to have the surgery on Oct. 28, 2004, at the age of 3.

For one, the device wasn’t FDA-approved until that August.

Janey had gone to Children’s Hospital for preliminary testing and blood work in July.

Children’s Hospital became only the second center in the world in 1997 to implant titanium ribs in patients with chest wall and spine deformities that impair lung function and bone growth.

Rominski said doctors there were committed to having Janey receive the surgery despite initial rejections through the family’s insurance carrier.

She said the total cost of the operation was estimated at $100,000 to $125,000.

Only seven hospitals in the United States were performing the surgery at the time.

“The hospitals were getting great results,” Rominski said.

The family ultimately won an appeal to the insurance company’s decision.

“It also helped that the FDA completed its review of the VEPTR - Humanitarian Device Exemption application,” said Rominski.

Approval was issued on Aug. 24, 2004.

A humanitarian use device is defined as one that is used to diagnose or treat a disease or condition that affects fewer than 4,000 individuals in the United States each year and for which no comparable device is available.

Janey was the 16th child to receive the titanium rib implant at Children’s Hospital.

The procedure went smoothly and was completed in well under the projected six-hour estimate.

Janey also was able to leave the hospital in just one week instead of the anticipated three-week stay, her mother said.

“She had her ribs on the left side - one rib was longer and attached to her spine and the other was from top to bottom of the rib cage,” she said. “Janey surprised the doctors by how well she could turn over and wanted up and out of bed.”

A BRAVE PATIENT

The little girl has and continues to be a brave patient through it all.

“The recovery was long at home with no running, bending, climbing, jumping or bathing until Dec. 25, 2004,” Rominski said in a journal entry. “She made it with lots of coloring, reading, computer games, shopping and television. After getting a great check up on Jan. 17, 2005, Janey will be scheduled for her first of many expansions in March.”

Janey has been healing properly and gaining weight.

She loves chicken and french fries.

And she also enjoys their cat, Autumn, and dog, Molly - a bassett hound.

….. Rominski said she wants to help get the word out that this is a viable procedure.

“I felt it was a story that needed to be told,” she said. “It’s something there to help somebody.”

There is also a Web site about the device at www.veptr.com.