I am giddy just looking at these vibrant, festive frocks. Can you imagine how it would feel to slip one on? I would twirl and twirl and twirl...
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Sitting in the living room of their Simi Valley home, Mike and Sandy Nash share snapshots of their 5-month-old son, Cameron.
In one photo, the infant’s fuzzy head peeks out from a bundled blanket. His blue eyes seem to sparkle and he is giving the camera his best toothless grin.
They say pictures speak a thousand words, but this image is deceptively adorable. For a baby with a broken heart, Cameron Nash looks like one happy little boy.
The truth is, his story has been marked by struggle. Born with hypoplastic left heart syndrome (HLHS), Cameron has endured more pain in five months than many people experience in a lifetime.
She and Mike learned something was wrong with their baby at her first ultrasound in March 2009.
“We found out we were having a baby boy and then about five minutes later we found out that he’s going to have a heart defect,” Sandy said.
“We should have known it would be a rollercoaster right then,” Mike said.
Hypoplastic left heart syndrome is a congenital abnormality in which the left side of the heart is severely underdeveloped, causing it to not pump blood as it should. Without treatment, the defect is usually fatal within the first week of life.
According to the American Heart Association, about 1 percent of babies born in the U.S. have congenital cardiovascular defects.
Because of the challenges that go along with a child who has a heart problem, the doctor asked Sandy three separate times if she was sure she wanted to continue with the pregnancy.
With a vision of Cameron one day running around with his big sister, Akina, now 2, Sandy’s answer was always the same: Yes.
“I didn’t think that it was my choice to take my son’s life away from him,” she said. “In my and my husband’s mind we have to do whatever we can to give him the best possible life.”
There are two major treatment options for babies with HLHS: a three-stage surgical procedure that reconstructs the child’s heart so that it can work using only two of the heart’s four chambers or a heart transplant.
On Aug. 14, when Cameron was born, he was taken immediately to Childrens Hospital Los Angeles. Mike didn’t even get a chance to hold him. After a series of tests, the doctors decided the newborn needed the three-step surgery.
So at just 4 days old, Cameron went under the knife. The surgeons reconstructed his heart so that the right side would pump to both the lungs and the body.
“You can’t fix the anatomy so you fix the plumbing, so to speak,” said Sylvia del Castillo, a pediatric ICU doctor at Childrens Hospital who has cared for Cameron since he was born.
Cameron remained in the hospital for two months. His recovery was slow going as he had trouble learning to breathe and eat, and he battled acid reflux and a blood clot.
On Oct. 14, the Nashes’ little boy was finally well enough to come home and meet his big sis. But a month later, Cameron went into cardiogenic shock. His heart was failing and he had to be rushed to the Simi Valley Hospital emergency room.
Sandy and Mike thought they were going to lose him.
Cameron pulled through but he had to return to Childrens Hospital.
Mike said it’s been difficult to not have his son at home and to have to visit him at the hospital, especially during the holidays.
“You want to be in the spirit but it’s hard to get to feel that way when baby’s first Christmas is in the ICU,” he said.
There were good days and bad days, Mike said, and though Cameron made some progress, it was “torturous.” Each setback felt like he was “socked in the gut.”
After Cameron endured a seizure, dialysis, a metal stint put in his aorta, and a ventilator, the doctors started to talk heart transplant. But tests revealed the infant had too many antibodies and would reject a new heart.
So instead his parents looked toward the second step of surgery, which is typically performed at 6 months. The surgery was their only hope for Cameron to improve because his heart was simply working too hard—like running a marathon all day, Sandy said.
It’s a risky surgery, del Castillo said, especially for young, underweight babies like Cameron, but the procedure is critical because it takes the load off the heart.
After overcoming an infection, Cameron finally had his surgery last Friday at Childrens Hospital. Though he had a 50-50 chance of surviving, he went through it like a champ, del Castillo said, adding that many in the hospital never thought he’d make it this far.
“He’s a trouper,” she said. “He’s going to take some time, he’s teaching us patience. But we have a much better feeling . . . that he will be okay. He’s totally battled the odds.”
Though he’s still in the hospital and has at least one more operation in his future, Sandy said the successful surgery has given her family renewed hope.
The last five months have been stressful and heartwrenching, as Sandy and Mike juggle full-time jobs—she at Trader Joe’s in Simi and he at the Department of Water and Power—with being at the hospital and parenting Akina.
And the costs add up, too. Mike said Cameron has accumulated more than a $1 million in medical bills. Though they have good insurance, it doesn’t cover the expense of driving to downtown L.A. six days a week or keeping Akina in daycare.
Family friend George Annino, who met Sandy 10 years ago when they worked at the Westlake Trader Joe’s, is collecting donations for the Nashes.
“People can always use help, we all realize that, and Sandy, she is just a sweet person, she’s a great mother,” said Annino, an Oak Park resident.
In the face of adversity, del Castillo said the Nashes have shown amazing resilience and positiveness—just like their little boy.
“Until the doctors tell us we’ve done all we can do, we’re going to keep fighting, too,” Mike said.
"Fill your paper with the breathings of your heart." ~ William Wordsworth