Bonita Springs family still on guard to protect their son, now 5
Sunday, November 25, 2007
Barely eight-months pregnant with her first child, there was no way she could be in labor already. Not at 32 weeks.
Wiesenbaugh already had called in sick that morning to her job at the Library Foundation of Los Angeles. When several hours passed and she still wasn’t feeling better, several frantic calls to her doctor followed.
“Something’s not right,” Wiesenbaugh said. “Something is definitely wrong here.”
The doctor told her to get to a hospital right away.
Wiesenbaugh’s child was born prematurely and placed under emergency care.
The boy, named Riley, came through it. And now he’s 5 years old.
But his infant and toddler years have presented one challenge after another for the young family.
Even so, with all that has gone wrong with Riley, one problem the family managed to avoid was having him contract RSV. But it’s been costly for them to provide Riley the preventative treatments.
Respiratory Syncytial Virus accounts for more than 125,000 hospitalizations each year, and is the leading cause of infant hospitalization in the U.S.
Though the condition can be deadly, it is preventable if the symptoms are caught in time.
Problem is, parents can easily confuse the symptoms of RSV with those of a common cold.
On that day in Los Angeles in 2002 when Wiesenbaugh was trying to get to the hospital, nothing would be easy.
Her husband, John Buck, was stuck at work, and it would take him more than an hour to fight his way through the congested L.A. traffic to get to her.
In the end, she wound up calling a cab.
“And then, to make matters worse, the cab driver couldn’t find the place and barely spoke any English,” said the Bonita Springs mother of two. “I couldn’t believe it was happening.”
When the communication barrier was finally hurdled, off to the hospital they went: Wiesenbaugh and her confused cab driver. Time to fight the L.A. traffic once more.
Although it’s of little comfort now, Wiesenbaugh had enjoyed a remarkably healthy pregnancy up to that point.
She ate right, exercised dutifully and stayed away from all the things she was supposed to stay away from.
No booze, no cigarettes, no anything that could negatively affect her unborn baby.
So her first inkling that something might be wrong came during the emergency C-section at UCLA-Santa Monica.
“The operating room filled up so quickly it was amazing,” Wiesenbaugh said. “They listened to his heartbeat and it was obvious that he was in huge distress. The (medical) team rushed in and took him. I didn’t even get to see him and I didn’t know what was wrong. It was just devastating.”
When they finally wheeled her in to see her newborn baby several hours later, premature little Riley was much smaller than most babies. Just four pounds, eight ounces.
And he didn’t look right.
“Preemies are very distinct looking,” Wiesenbaugh said. “There’s no baby fat on them at all. Riley didn’t look like an infant at all – he looked old.”
But that wasn’t all of it. Not by a long shot.
Riley had suffered a massive brain hemorrhage.
To make matters worse, his kidneys weren’t working properly, and at one point, Wiesenbaugh and her husband were faced with the unenviable task of signing a DNR _ Do Not Resuscitate _ order.
But Riley made it through.
Today at age 5, Riley is a special-needs child.
He is largely non-verbal, hard of hearing and has only limited peripheral vision. Because of the nature of the injuries to his brain, he has an extremely difficult time processing the world around him. There’s a shunt in his head to transfer excess cerebral spinal fluid to his abdomen.
Riley’s mother and father moved their young family to Florida about a year and a half after he was born, seeking whatever emotional comfort they could from family and friends.
Now, Wiesenbaugh wants to offer comfort to other young mothers.
Despite Riley’s medical troubles, his family has managed to keep him, while at risk for RSV, from contracting it.
“It’s a very common virus that we all have the potential to get, but usually we just get a cold,” said Dr. Michael Light, a professor of clinical pediatrics at the University of Miami. “The problem is that babies have the potential to develop bronchiolitis from it.”
Light said all babies contract RSV at one point or another – it’s not a condition unique to preemies, like Riley, as is commonly thought.
“The majority of the time, it stays in the nose, not the lungs,” he said. “It’s when it gets to the lungs that there’s a problem.”
RSV season stretches from November to March in most parts of the country, but Florida has a season that lasts year-round, generally kicking into high-gear around August, Light said.
“It’s the peak of the season now, but because of the humidity here, it lasts all year,” he said.
RSV is generally transmitted by hand, Light said.
“When somebody touches a surface with RSV on it, and then touches a baby, it goes in through the eyes or nose,” he said. “The most useful prevention is simple hand-washing.”
But there’s also something of a wonder drug out there, Light added.
It’s called Synagis, and it’s administered at the first signs of RSV.
Unfortunately, it’s also expensive – about $1,000 for each monthly injection.
To keep him as well as possible, Riley received Synagis injections for six months, and Wiesenbaugh had to pay the $6,000 fee up front with her credit card, only $3,000 of which she eventually got back from insurance coverage.
“Not only that, but for some reason they didn’t have Synagis in Los Angeles, so I had to call a pharmacy in Washington, D.C., have them ship it to a pharmacy in California, and then have them ship it to my doctor,” she said.
Wonder drugs aside, prevention is the key to avoiding RSV, Wiesenbaugh said.
“If you have an at-risk child, be careful of the contact the child has with family and caregivers,” she said. “If anyone’s around your child, be sure to have them wash their hands. Keep away from crowded places like malls and play centers and from other kids with cold symptoms.
“And don’t have any qualms about telling people who want to touch your beautiful young child, ‘Hey, you can look, but please don’t touch.’”
Sadly, that isn’t much of a problem when it comes to Riley, Wiesenbaugh said.
“A lot of people won’t even look at us – they’ll look right through us,” she said. “They don’t want to identify with the fact that this could happen to their own child, and I don’t blame them for that. I certainly didn’t want it to happen to my son.”
A few years after Riley’s birth, Wiesenbaugh and her husband welcomed another child into the world – a healthy baby boy named Ronan who will turn 3 in December.
“He’s healthy and he’s energetic,” Wiesenbaugh said with a laugh. “Boy, is he energetic!”
For more information on how to prevent RSV, visit www.RSVprotection.com.
Contact John Osborne at email@example.com