Fighting for her life
POSTED: Friday, January 30, 2009
Two-week-old Jianni Marie Kiana Mata is fighting for her life.
She was born Jan. 11 at the Queen's Medical Center, daughter of Justin and Stevie Mata of Ewa Beach.
» A "Children's Day" fundraiser is planned from 10 a.m. to 4 p.m. Feb. 14 at the Chevron Refinery at Campbell Industrial Park with game booths, food and rides.
» Four bands will play and a silent auction and raffle will be held from 4 p.m. to 10:30 p.m. March 8 at Don Ho's Island Grill.
» Donations also can be made to "The Jianni Mata Fund" at any Bank of Hawaii branch.
Jianni weighed 7 pounds, 4 ounces and was 20 inches long at birth, but doctors at Queen's said she had a heart defect, said Diana Mara, Stevie Mata's mother.
The baby was transferred that night to Kapiolani Medical Center for Women & Children, where pediatric cardiologist James Sim found she had a hole in her heart. Also, her aorta, the large blood vessel providing blood from the heart to the body, was abnormally narrow, a condition known as critical aortic stenosis.
Jianni was flown with a medical team Jan. 13 to the Children's Hospital in San Diego, where Sim's diagnosis was confirmed. The director of pediatric surgery there is Dr. John Lamberti, a renowned pediatric cardiac surgeon who has been coming to Hawaii for years to assist with Kapiolani's complex pediatric cardiac cases.
The Matas, staying in the Ronald McDonald House across from Rady Children's Hospital, are suffering an economic as well as medical crisis. Justin, a journeyman tile setter, was laid off the week before Jianni was born, said Mara.
Jianni's ohana, parents of Justin and Stevie Mata, are seeking donations from businesses, family and friends to help the unemployed family and defer medical expenses. Fundraisers will be held Feb. 14 and March 8.
Corrective surgery began Jan. 20 but had to be stopped because the baby's heart fibrillated. A procedure was done Jan. 21, and on Jan. 22 the baby was in surgery 111/2 hours, according to a journal posted online at http://www.caringbridge.org by her parents.
About seven hours into the operation, they said, surgeons told them they could not repair the leaking valve and had to replace it with a mechanical valve. Lamberti did the replacement, working with cardiovascular surgeon Peter Pastuszko.
The valve will have to be replaced as Jianni grows.
She was on a life-support machine to give her heart time to rest and get stronger, and doctors had to wash and clean out her chest to reduce bleeding, her parents said.
On Saturday, they said, "the neonatologist ... said her heart is getting a little stronger. It's not where they want it to be yet, but it is a little step. They had to turn her pacemaker on to help her heart rhythm."
The Matas reported Monday that the surgeon found bleeding coming from the baby's chest and heart surface and took steps to decrease it.
But Jianni "has been very alert with her eyes wide open and looking around," the Matas said. "She's been wiggling her toes and moving her hands. When you put your finger in her hand, she holds onto it and squeezes.
"It's nice to see her eyes open a lot more when we talk to her and she looks at us. We've been giving her everyone's love."