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A PUZZLE TO WARM THE HEART
Albert and Sabrina Garibay delivered their firstborn July 22, 1999, and named her Alison. She gave no indication of the mystery she would become.
“They call me a puzzle,” says Alison with a grin. “That’s what I am, a puzzle.” A multidisciplinary team of doctors at Children’s Hospital Central California agrees.
The Garibays learned within four days of Alison’s birth that her heart had just one chamber and would need repair. Dr. Edwin Petrossian, Children’s medical director, cardiothoracic surgery, was confident he could delay surgery a few months.
“Children born with complex heart disease almost always require heart surgery as a newborn,” says pediatric cardiologist Dr. Kenneth Rouillard. “It’s rare for these infants to have the right balance of blood flows to their body and lungs like Alison had.” Because her heart could temporarily compensate for its deformity, surgery could wait until Alison was bigger.
“They told us for every malformation in Alison’s heart there was something reciprocal to offset it,” says Sabrina. If Alison is a puzzle, then the pieces were crafted by a Creator with a good plan. “It was God’s will. Ultimately it was all God’s will,” says Sabrina. “Each anomaly complements the other.”
Looking for missing pieces
When Alison reached 3 months, our cardiac team performed the first of three heart surgeries, but it wasn’t her first surgery. Alison also has heterotaxy syndrome, which means her organs are flipped midline. She required surgery as a 3-week-old to correct twisted intestines. Another heart surgery occurred after Alison turned 3, and the final heart surgery – the Fontan procedure – took place June 9, 2003, one month shy of her fourth birthday. At an age when preschoolers learn to count to 10, Alison could hold up four fingers not only to show how old she was, but also to indicate the number of surgeries she’d had.
In second grade Alison experienced severe back and abdominal pain. The Garibays turned again to Children’s Hospital. An ultrasound revealed her gallbladder, which was flipped, had gallstones and required removal. Alison would undergo her fifth surgery as a third-grader.
At age 9, Alison experienced trouble breathing. Her pediatrician prescribed an inhaler. “We took it everywhere and used it regularly, but it didn’t seem to help,” says Sabrina. Alison struggled with low energy – completely uncharacteristic of her personality – and began coughing up what would later be identified as “castings.”
“At first I thought I was coughing up my lung,” says Alison of the thick, rubbery-like mucus. Admitted to Children’s shortly after her 10th birthday with pneumonia, Alison brought along another puzzle. What caused the castings and what could be done about them?
Bringing the pieces together
Dr. Carl Owada, Children’s medical director of the cardiac catheterization laboratory, and Dr. Mary Anne Tablizo, a pediatric pulmonologist, each performed procedures that led to the diagnosis of plastic bronchitis, a rare side effect of the Fontan procedure.
The cardiothoracic surgery team at Children’s Hospital is part of the Northern California regional congenital heart program affiliated with Stanford University. Each year, surgeons in the program perform over 1,000 operations. Between 1997 and 2010, surgeons performed 126 Fontans at Children’s, but our doctors had never encountered plastic bronchitis until Alison.
Our multidisciplinary team of specialists faced a puzzling challenge. “Each one of us has our own specialty, our knowledge and skills,” says Dr. Rouillard. “We often have to come together with patients like Alison. That’s one of the things unique about working here. Everyone works collaboratively.”
Doctors prescribed an effective treatment regimen that incorporates a vest and a combination of medications. By inflating and deflating rapidly, the vest oscillates the chest wall with gentle pressure. Alison wears it twice a day for about an hour each time. “This seems to be working well for her,” says Dr. Tablizo.
“It’s not surprising with Alison,” says Dr. Rouillard, giving his patient much of the credit for her improved health. “She’s a fighter.”
No matter how impossible a puzzle may seem, its scattered pieces always fit together perfectly. The Garibays and doctors at Children’s Hospital Central California have worked tirelessly to solve the “Alison puzzle.” With patience, perseverance and prayer a beautiful picture has emerged – one of courage and hope.