Medical ordeals don’t dim family’s spirit
In a cozy living room filled with toys and a Christmas tree tucked into a corner, 7-month-old Anthony Aguilar looks up at his 4-year-old sister, Crystal, with huge blue eyes from a plastic child’s seat on the floor.
On the couch, Crystal smiles back at her brother as the kids’ mom, Maricela, hovers nearby. Their dad, Todd, types away at his computer.
Todd and Maricela’s four other children are away at school during the day. The couple focus much of their energy on making sure their kids are safe and healthy, but health problems have plagued Anthony and Crystal since birth.
Anthony was born several months prematurely, and one of his head plates was not closing off correctly, causing his head to be lopsided.
Crystal was born with a crushed aorta and a hole in her heart, which later was repaired. She has developmental disabilities and is small for her age. She has problems speaking.
Todd and Maricela are grateful to the medical workers who helped their children, including Dr. Rita Wang of Job’s Peak Pediatrics. They hope that sharing their story will help others.
“We thank all of the medical teams that gave us the chance to have a family,” Todd wrote in an e-mail. “We think that Barton Memorial Hospital and St. Mary’s Hospital gave us the chance to have a very beautiful holiday with our children. We thank all that have been involved with the care of children and the care of people that need help.”
Todd, 37, has his own company, and Maricela is a homemaker. They live in a quiet neighborhood in South Lake Tahoe.
The quiet scene at the Aguilar home is in contrast to the frantic hours after Crystal’s birth.
Crystal was born at Carson Tahoe Hospital but immediately was flown to St. Mary’s Regional Medical Center in Reno. Her parents found out she was suffering from heart, liver and kidney failure.
After that, she was flown to Lucile Packard Children’s Hospital at Stanford University Medical Center in Palo Alto. One week later, she went into an 11-hour surgery and was in the hospital for two months.
A hole in Crystal’s stomach caused her stomach to protrude, and it had to be put back in and resewn. The surgery was performed at Barton Memorial Hospital.
Crystal’s motor skills are not as advanced as those of other children her age. She sees a speech therapist.
Todd and Maricela traveled back and forth from Reno to South Lake Tahoe while their daughter was in the hospital and began the same process over with their son, who was born prematurely.
Maricela was pregnant with Anthony and was shopping at Raley’s with Todd when she experienced a medical emergency.
When they arrived at Barton Memorial Hospital, Crystal’s doctor, Dr. Rita Wang, was working. She performed a Cesarean section on Maricela.
“She was very surprised,” Todd said. “She suited up and assisted in the operation. Dr. Wang shook her head and said (Anthony) was close to death.”
Anthony was transferred to St. Mary’s Regional Medical Center as well. His lungs were not properly developed.
“He was hooked up to a machine that did lung function,” Todd said. “We had to start over, going from here to Reno. He did really well and came home after three weeks.”
“Besides that, he is doing well now,” Todd said. “He is functioning normally, speech and everything.”
Medi-Cal paid for most of the Aguilar children’s medical bills, although they still have to pay some hefty partial bills.
“They show up during the holidays,” Todd said about the bills. “We get blindsided.”
Anthony has a good prognosis.”With Anthony, he really surprised us with how well he did, and we’re very happy with how he’s done,” said Wang, who spoke to the Tribune with the Aguilars’ permission.
Wang said Crystal is improving, too.
“She is gaining weight; we’re happy with that,” Wang said. “She is actually fairly stable. She hasn’t been growing well and has developmental delay, but healthwise, she has a good prognosis. … We’ll keep monitoring her and will see. She’s very small for her age; hopefully that will improve with time and has so far.”
The Aguilars have a family history of asthma on Todd’s side and a history of high blood pressure on Maricela’s side, but nothing in their family suggests a history of life-threatening illnesses.
“A lot of this is a big surprise,” Todd said. “It was tough to cope with at the beginning. We take a lot of it day-to-day. We break down sometimes.”
Todd said Crystal and Anthony are accustomed to going to doctors by now.
“Crystal is comfortable with it,” he said. “She lays there and lets the doctors do what they need to do. She’s coping with it a lot better. At the beginning, she bit doctors.”
Todd remains grateful for the care his children have received.
“Our lives have been changed by the technology and the love we have for all of our kids,” Todd wrote in an e-mail. “There is hope for all sick kids because of people that do care.”