2003-07-15
by Linda Braden Albert
of The Daily Times Staff
Ben Coulter does all the mischievous things any active 17-month-old baby boy delights in doing.
``He really is trying to give me a nervous breakdown!'' said mom Karin Coulter in a half-joking manner as she diverted the curious tot's attention from the telephone. ``He just recently learned how to open his vitamin bottle.''
It's hard to believe this is the same little boy who had his chest cut open a little over a year ago to repair a congenital heart defect.
Unexpected news
When Ben was born Feb. 4, 2002, in Knoxville, parents Brad and Karin Coulter had no idea their first child had a serious problem.
``There were no symptoms to start with,'' Karin Coulter said. ``At one day old, the pediatrician heard a heart murmur and on the second day, we were told it was a significant heart murmur and that we needed to go to Children's Hospital for an echocardiogram.''
The news was devastating: Ben was diagnosed with Tetralogy of Fallot, a congenital heart defect. The cause is unknown and the condition does not become apparent until after the baby's birth.
Coulter said the condition is a four-component defect. The first component, ventricular septal defect, or VSD, is a large hole between right and left ventricles of the heart that allows venous blood to pass from the right ventricle to the left. From there the blood goes to the aorta and on to the body without passing through the lungs to be refreshed with oxygen.
The second major component is a stenosis, or narrowing, at or just beneath the pulmonary valve. This narrowing partially blocks the flow of venous blood into the lungs. The last two components are a displaced aorta and a thickened right ventricle wall.
According to the Gale Encyclopedia of Medicine (www.findarticles.com), the heart is two pumps in one. Normally, the ventricle on the left side pumps blood full of oxygen through the body and the ventricle on the right side pumps the same blood through the pulmonary artery to the lungs to take up oxygen. The left ventricle operates at pressures about four times as high as the right ventricle. Blood is supposed to flow through one side, then the other.
With Tetralogy of Fallot, the blood that is supposed to start flowing through the lungs cannot easily get there because of the narrowed valve, however the hole between the ventricles remains open. Because of the opening between ventricles, much of the blood that comes back to the heart needing oxygen is sent out without being properly oxygenated. In addition, the right side of the heart has to pump at the same pressure as the left side.
Surgery required
The Coulters, originally from Blount County and now residents of Knox County, were told that Ben would need surgery to repair the defect. They learned all they could about Tetralogy of Fallot -- as Karin Coulter said, ``I think I know more things than I really wanted to know'' -- and decided to take little Ben to the University of Michigan Health System in Ann Arbor for the surgery because of its excellent reputation.
Ben was 3½ months old when the surgery was done May 24, 2002.
``What person needs to be having surgery at this age?'' Coulter said. ``And he was not the youngest one there.''
The surgery lasted almost three hours.
``I thought it was never going to end,'' Coulter recalled.
Part of the preparation for the parents included seeing photographs of other children post-surgery. Coulter said that helped her understand what would happen but ``no matter what you do, you aren't prepared when it's your own child,'' she said. She kept a daily journal of Ben's progress from the time the family left Knoxville until they returned home after his surgery, hoping that the information would help other parents who are going through the same experience. Both the journal and photos of the baby following surgery may be viewed at Ben's Web site, www.bencoulter.com .
Since then, Ben has progressed into the happy, active little boy he is today. His mother said the doctors don't anticipate any further surgeries will be required as Ben gets older, and his medication was discontinued about two months after the surgery. At his last visit to his cardiologist on Jan. 7, 2003, an echocardiogram showed a small VSD but otherwise everything was fine. Ben will not need to visit the cardiologist again until his check-up next year.
Saving Little Hearts
Until Ben was diagnosed with a heart defect, the Coulters didn't know anyone with a child with a heart defect.
``It's remarkable to see how many people are going through the same things you are,'' Coulter said.
Because of their experiences, the young parents decided to form a support group offering an open forum for families dealing with the hardships of raising children with congenital heart defects.
Thus was born Saving Little Hearts, which meets from 6 p.m. to 8 p.m. the first Tuesday of each month at the Baptist Eye Institute in Knoxville. The first meeting was held last September.
``It's open to anyone, moms, dads, kids, grandparents,'' Coulter said. ``It's a great way to see the kids interacting.''
One of the group's projects has been to raise funds for scholarships to send East Tennessee children to a ``heart camp'' sponsored by Le Bonheur Medical Center in Memphis. Any Tennessee child between the ages of 8 and 18 with a congenital heart defect is welcome to apply for a scholarship, with Saving Little Hearts paying all costs associated with the camp. Coulter said children who attend have fun with kids who have the same scars as they do and know what it's like to have had heart surgery.
The group also offers services such as giving surgery care packages to families whose child is about to undergo heart surgery and offering information to families about congenital heart defects.
Coulter said talking with someone who has been through the same experience helps tremendously.
``We'll try to help people get as much information as they want,'' she said.
The Coulters may be contacted at Saving Little Hearts, 5629 Barineau Lane, Knoxville, TN 37920 or by calling 865-748-4605. For more information about the support group, visit the Web site at www.savinglittlehearts.com .
For More Information ... WHAT: Saving Little Hearts, an open forum support group for families dealing with the hardships of raising children with congenital heart defects WHEN: 6 to 8 p.m. on the first Tuesday of each month WHERE: The Baptist Eye Institute, Knoxville CONTACT: Saving Little Hearts, 5629 Barineau Lane, Knoxville, TN 37920; telephone 865-748-4605; Web site www.savinglittlehearts.com