FAMILY SUPPORT Joined by heartstrings

A mother says only another parent with a seriously ill child can understand.
By LARRY GIERER
KNIGHT RIDDER NEWSPAPERS
COLUMBUS, Ga. -- Less than a month after he'd taken his first breath, Ty Levy was expected to take his last.
Medical personnel surrounded his crib. One by one, tubes running into his tiny chest were removed.
Usually, no more than two family members at a time had been allowed to visit Ty in intensive care. On this day, an exception was made.
The boy was placed in his mother Angie's arms. There, he was gently rocked.
Soon, something unexpected happened.
"He began to get better," his mother said. "The tiny holes in his lungs began to heal just like they'd been expected to but hadn't. Two weeks later, we were able to take him home. The nurses told me that all Ty needed was to be held by his mother."
When Angie and husband Tamir Levy left Children's Healthcare of Atlanta with their son to return home to Phenix City, Ala., they left behind doctors and nurses in whom they'd placed their trust. They also left behind new friends with whom they'd shared support.
They know what it's like
Randy and Mandi Odum also live in Phenix City. Their son Joshua was born the same Jan. 11 evening at Columbus Regional Medical Center as was Ty. They began life just three hours apart. Eight days later, Joshua would be lying next to Ty also in a life and death struggle.
"Having your baby fighting for its life," said Angie Levy. "You don't know what it's like unless you've been in those parents' shoes."
And that's where the support of others in a similar situation comes in.
"We didn't know each other," said Randy Odum. "One day the telephone rang in the unit and it was our pediatrician David Flowers calling to check on Joshua. When we were through, he asked if I would give the telephone to Angie. Both of our boys were his patients."
Thus the connection was made.
"There were a lot of children there," said Mandi Odum, "but at that time they said ours were among the sickest."
The Sibley Heart Center's Gordon Borkat, the only pediatric cardiologist in southwest Georgia, diagnosed the cases of both boys. He says that the support of parents in a similar situation is important.
Rare cases
While eight children per 1,000 live births involve a heart defect, Borkat says both of these cases were rare.
Joshua is a Down syndrome child who arrived a month early. While giving Joshua's 3-year-old sister, Jessica, a bath, Mandi Odum's placenta ruptured. There was hemorrhaging.
An ambulance was called.
Joshua came into the world via a Caesarean section.
It was discovered right away that Joshua had an atrioventricular canal.
"His heart was not completely developed," explains Borkat. The septum, a wall separating the upper and lower chambers of the heart, was absent. This hole, Borkat says, allowed blood to travel between the right and left sides of the heart. If not corrected, this can lead to serious lung damage because of the higher than normal pressure in the lung's blood vessels.
More problems
That problem was to be corrected at a later date. But then, a week after birth, it was discovered Joshua also had pulmonary stenosis -- a narrowing of the pulmonary valve, which opens to let low-oxygen blood flow from the right ventricle to the lungs where the blood is oxygenated.
Open-heart surgery was needed and he was taken by ambulance to Atlanta where surgeon Joseph Forbess did the work.
Ty's trouble was evident from the time he was born and had a greater sense of urgency.
"He was struggling to breathe," recalls his mother. "I thought he might just need something sucked out of his lungs but it was more."
"Ty was born at 6:36 p.m.," says Tamir Levy. "By 5 a.m. he was in surgery in Atlanta. He only had about an hour left when we got there, they told me, and still was given no more than a 50 percent chance of making it. They said if Dr. Borkat had not diagnosed him so quickly he would've had no chance."
"Ty was one of the sickest children I've ever seen with his illness," Dr. Borkat said. "It's quite rare."
Heart and lung problems
Ty was born with total anomalous pulmonary venous return, which means the pulmonary veins that carry blood back from the lungs to the heart with oxygen were not connected to the heart. They just drained off into a chamber behind the heart. This was discovered, says Dr. Borkat, by an echocardiogram. Kirk Kantner performed the open-heart surgery.
But there was another problem.
Ty developed pneumothorax. This is a rupture of air-filled sacs on the lung called blebs. Air is allowed to escape from the lungs and enter the chest cavity. This can cause the lung to collapse.
"They put tubes to suction the air out of Ty's chest," said Angie Levy, "but took them out when doctors felt nothing else could be done for him. "
"On three different days I was told Ty probably wouldn't make it through the night," Tamir Levy said.
Outlook
Ty is not expected to need anymore surgery, and Joshua will need some more to correct a foot problem.
Both boys will be monitored for quite a while, said Dr. Borkat, who praised the pediatric unit at Columbus Regional for having "everything that's needed to make sure the children in situations such as these are kept stable."
As for the Levys and Odums now?
"We don't get to see each other that much now," Mandi Odum said. "There are still so many doctor appointments and both families are trying to get back to a normal life. We still talk."