Bryson Williams, 20, of Goleta hasn’t had it easy throughout his young life.
His mother, Debbie, said he has had seizures periodically since he was 16 months old. And after having an aneurysm while in high school, Williams underwent an open craniotomy to repair his brain.
Now he’s facing one of the biggest hurdles of his young life — surviving a heart transplant.
The Dos Pueblos High graduate was hospitalized in December with heart failure, and he spent five days at Santa Barbara Cottage Hospital.
After getting progressively worse, Williams was rushed into surgery to put a balloon in his heart to keep him alive, and he was transported to Cedars-Sinai Medical Center in Los Angeles. He was kept under sedation for a week to see whether he would recover, but eventually doctors installed a pump to help keep his heart beating with the help of a machine.
Now, he’s waiting to gain enough strength to be able to endure the transplant.
Williams is back home and is hooked up to a pump that sustains his heartbeat until he can receive a working heart.
His family isn’t sure when a heart will come through; it could be up to six months before he’s able to get one. For now, Williams is building strength for the surgery.
How much that surgery will cost is an open question, and as the Williamses prepare emotionally for the operation, the future medical bills are also in their minds.
“I don’t know how it’s going to work,” Debbie Williams. “We’re just waiting to see what comes in the mail.”
She said the family is still receiving bills from her son’s last round of surgeries. One she opened recently invoiced two days of anesthesia and topped $10,000.
The family’s insurance policy has a lifetime cap of $3 million, and about $1 million was used during Williams’ brain surgery.
“I don’t know what’s going to happen,” his mother said, adding that the family is watching with interest new health-care legislation addressing fewer caps and pre-existing conditions.
She said she talked to one woman at the hospital who had a heart transplant and that her operation had cost $4.5 million.
The family is trying to apply for Medi-Cal, and because Williams is younger than 21, some of the cost of his surgeries could be minimized through California Children’s Services, a state program for children with certain diseases or health problems.
Family friend Evelyn Senn has been friends with Debbie Williams since the pair were pregnant together 20 years ago.
“He has good days and bad days. Thankfully, he has really supportive parents and an incredible girlfriend,” Senn said of Williams’ girlfriend, Laura Beavers.
The pair have talked about getting married in the years after the transplant, and Senn said she’s grateful Williams has something to look forward to.
“He has to something to fight for,” Senn said. “There’s a promise of a good life.”
Williams has dreamed of pursuing an art degree, she said.
“This kid has angels on his shoulder,” Senn said. “God has a plan for him.”
Because Williams’ heart is constantly being sustained by a machine, he has a battery backup pack if he ever needs to leave the house. His parents also had a new circuit installed in their house that won’t interfere with the machine should the power go out.
Nurses from Cedars-Sinai have come up to train members of the fire department, Williams’ parents and nurses from Cottage Hospital.
Williams’ parents have decided to donate his heart for medical research once the transplant has occurred.
“He needs to hear that there are lots of people out there living with donated hearts,” said Senn, adding that Williams is one of the youngest cases at Cedars-Sinai to receive a heart transplant.
After the surgeries, Williams will have to relearn everything, such as how to walk again. Senn said the Williamses will need to stay in Los Angeles with him until he’s well enough to return home. His mother, who works as a hairstylist, is expecting to leave work for at least a year to help him recover.
Senn said she started a trust fund in December when Williams was admitted to the hospital, and said it goes toward bills the family has incurred and toward any living expenses Debbie Williams and her husband, Bruce, a longtime construction contractor in Santa Barbara, will need while they’re living in Los Angeles.
Donations can be made at any Santa Barbara Bank & Trust branch, and in addition to donate money, people can donate blood in Williams’ name.
He will be credited those units when he undergoes his next surgery and his family won’t have to pay for those units used.
PayPal donations also can be made to drsuez4@gmail.com, which is directly linked to the trust fund account. A request form for a PayPal donation can be sent to senn24@cox.net. For more information about Williams, e-mail Karen Doehner at doehner@eastasian.ucsb.edu.
Senn said she hopes someone will be able to donate a scholarship in Williams’ name.
“That would really get him thinking about his future instead of just thinking about this surgery,” she said.
— Noozhawk staff writer Lara Cooper can be reached at lcooper@noozhawk.com.
