ROBBY'S STORY: LITTLE BOY, BIG HEART

SPECIAL SECTION

Valerie and Robby have been Top Heart
Team Fundraisers since robby was
born with a heart defect in 2004.

Valerie Guse had her son Robert Sampson on February 14, 2004. She knew—because he was born on Valentine’s Day—his birthday would always be associated with love and hearts. What she didn’t know then was that Robby’s heart would quickly become associated with the American Heart Association and its annual Heart Walk.

Shortly after he was born, Robby was diagnosed with tetralogy of Fallot (TOF), a rare condition referring to a group of four types of heart defects present at birth. He was born with a narrow pulmonary valve (the tube that connects the heart with the lungs); an atrial septal defect (ASD), a hole between the top two chambers of the heart; a ventricular septal defect (VSD), a hole between the bottom two chambers of the heart; and a thickened muscular wall.

It was important that Robby gain weight by having smaller, more frequent meals, and that he didn’t become anxious (through crying) because low oxygen levels would cause his organs not to work properly.

“Basically, I had to feed him whenever he was hungry and not let him cry,” Valerie explains. Three days later mom and baby were released from the hospital, but because Robby was on the more severe end of complications, he would need weekly checkups with a primary cardiologist at Children’s Heart Clinic in Minneapolis to make sure he was growing on pace and that his heart wasn’t in failure or retaining fluid. Robby’s cardiologist, Dr. Amarjit Singh, reassured Valerie that most cases of TOF can be corrected with surgery, and the babies typically do well. Ninety percent survive to adulthood and live active, healthy, productive lives.

“I never got down about his diagnosis because I refused to live in a bubble of fear and wonder,” says Valerie, who has always tried to maintain a positive outlook on life. “I come from a very religious family and felt that Robby was given to me to take me down a new path in life—which he most definitely has.”
 

The Surgeries

Before she had Robby, Valerie worked for an accounting firm and was going to school. She quickly put everything on hold to focus on her son. She nursed him 24-7 (roughly every hour for a brief 10 minutes) so that he would gain weight, “which meant little sleep for me, but his gaining weight was the most important thing,” she comments. Another reason she quit working was that she couldn’t risk sending him to daycare where he might pick up germs and become ill.

He had his first major surgery when he was four months old. Surgeons closed his VSD hole and replaced Robby’s pulmonary valve with an artificial valve using porcine, or valve tissue from a pig.

He was a healthy, vibrant child until shortly after his third birthday, when he began to show signs of slight heart problems. A cardiac catheterization was performed to check the size of the pulmonary valve, and it was determined that Robby would need another open heart surgery to close the ASD and replace the artificial valve. He had a second surgery in January of 2008, this time with bovine pericardial tissue (from a cow) replacing the porcine valve. Dr. Francis Moga, Robby’s pediatric cardiothoracic surgeon at Children’s Heart Clinic told Valerie that surgery would be required every two to four years until Robby was old enough to receive a mechanical valve. In order for this to happen, he has to be mature enough to take blood thinners every day so that blood clots don’t form.
 

Making Strides

According to the Department of Health and Human Services, major breakthroughs have occurred in the surgical treatment of congenital defects since the 1940s, and great strides have been made in the treatment of cardiovascular disease in infants and children. Even so, the cause of most congenital heart defects—those occurring during development of the fetus—is unknown.

It could be genetic—cardiovascular disease runs on both sides of Robby’s family—it could have been caused by a viral illness during Val’s pregnancy or it could’ve been caused by environmental factors.

The fact of the matter is that it does happen— according to the American Heart Association, nine babies out of every 1,000 will have some form of congenital heart disorder (heart defects are among the most common defects). If it happens to your child, know that it’s not a death sentence. In just ten years, from 1987 to 1997, death rates from congenital heart defects dropped 23 percent. Make your child’s life as ordinary as possible, get them involved in activities, create a routine, and don’t be afraid to use discipline when necessary, Valerie advises. “You are raising your child to be an adult, and the worst thing you can do is give in to their every want ‘just in case’ they aren’t around later. Believe they will outlive you. It will make your life easier.”

When Robby was ten months old, Valerie returned to school and currently juggles nursing school with working as often as possible in the cath lab at Regions Hospital in downtown St. Paul. Robby is five today and plays soccer and baseball (taking breaks when he needs to) and has fun goofing around with his friends and 3-year-old little brother Easton. Robby is full of life and full of love, fitting for a little boy who shares his birthday with Valentine’s Day.

Valerie comments, “I am truly blessed to have been given the opportunity to raise him.”

Join the Start! Heart Walk All-Star Team at www.twincitiesheartwalk.org