Published: November 07, 2009 06:39 pm      

Duncan infant dealing with rare condition

DUNCAN — At 11 weeks old, Kayden Ward is like any other infant, only with one big difference. Kayden has a rare incurable condition called Congenital Vascular Lymphedema.

His parents Brittany Rodriguez and Clay Ward said they spend 24 hours, seven days a week with Kayden because there’s so much that goes into taking care of an infant with such a condition. They have to wrap his feet and other parts of his body to reduce swelling.

The condition is something Kayden has been dealing with since he was born. Rodriguez said doctors weren’t sure what they were dealing with.

“They just thought it was swelling,” Rodriguez said. “They didn’t know what it was.”

But when Kayden started getting infections, including a staph infection from when the umbilical cord was cut, doctors realized there was something more to the swelling. Rodriguez said the doctors had Kayden taken to a hospital in Oklahoma City.

“They said it was lymphedema,” she said.

Ward said there’s many more precautions they have to take as parents. Kayden doesn’t have much of an immune system because the lymphatic system is usually a person’s first line of defense.

Ward said the Kayden is supposed to stay out of the sun because he could be easily sunburned. Any scratch, no matter how minor it may seem, could result in a hospital visit.

“A mosquito bite could be critical,” Ward said.

Melissa Howe, Kayden’s grandmother and Rodriguez’s mother, said Kayden will also have to watch what he eats throughout his life.

He’s already had to change formula several times. When he’s older, he won’t be able to eat fats. Some fruits and vegetables could be bad for him. And he’ll have to avoid salt because it would cause increased swelling.

He also won’t be able to take part in contact sports because of risk of injury.

Howe said these are things the family has been learning. It didn’t take doctors long to figure out something was wrong.

“He had nothing to fight it,” Howe said.

Since finding out about Kayden’s condition, the family has done research with help from Howe. They looked on the Internet, talked to doctors, and met with people who have the same or similar conditions.

Rodriguez and Ward had to have training to wrap Kayden’s body parts to reduce swelling. If wrapped incorrectly, the swelling could actually get worse.

They’re also waiting on special clothing to arrive. These compression garments will help to control the swelling. Kayden will have a two-piece suit for the day and another for night.

The family found out it will take six to eight weeks to get Kayden’s first set of compression garments. Because of this and because Kayden is growing quickly, the custom made garments had to predict how much Kayden was going to grow since he was measured.

“When we get the compression garments in, it will be a lot easier,” Ward said.

Kayden doesn’t leave the house much. When he does, it’s usually for visits to the doctor or physical therapist.

Rodriguez said, for the most part, Kayden can’t be around people because of the risk of getting sick.

“The doctors make him the first patient so he doesn’t have to be around sick kids,” Rodriguez said.

The family has also made friends with hand sanitizer. Everyone has to clean their hands before handling the baby. Hand sanitizer is also a must for the diaper bag, Rodriguez said.

Ward and Rodriguez are striving to do all they can for Kayden, although there is some difficulties for the first-time parents.

Howe said everyone has had to make sacrifices. Rodriguez was living with Howe, but she and Ward have moved into a less expensive, smaller home.

“You have to be willing to give up anything you can for a little, innocent baby,” Howe said.

She said there have been many people who have helped, including Ward’s mother, Shannon Ward. An account for the baby has also been set up at First Bank and Trust under the name “Kayden Ward Medical Account.” The bank is managing account for the family.

Howe said the family has to be a team because Kayden’s life depends on it. Because of this, it has helped bring the family closer together, Howe said.

“He’s normal,” Howe said. “He does what other kids can do.

“He has been a blessing and a miracle to us all. We wouldn’t trade him for the world.”