Shelley Grieshop/The Daily Standard
Four-year-old Adam Dysert of Coldwater plays with his remote controlled truck in his family's home on Friday. Dysert, like 32,000 other babies each year, was born with a heart defect. Today is designated "A Day for Hearts - Congenital Heart Defect Awareness Day."
Coldwater boy suffers heart trouble
Medical care helps
Valentine's is day for heart awareness
February 14 is "A Day for Hearts"
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By SHELLEY GRIESHOP
The Daily Standard
Adam Dysert's bedroom walls are decorated with a wallpaper border of construction vehicles such as dump trucks and bulldozers - his favorite play toys.
But not too long ago his parents were wondering if their now bubbly 4-year-old son would ever have the strength to sit on the floor and play with his toys like other kids his age.
Adam, the first child of Brian and Teresa Dysert of Coldwater, was born with Hypoplastic Right Heart Syndrome, an underdevelopment of the right-sided structures of the heart. This particular congenital heart defect causes inadequate blood flow to the lungs and gave little Adam a bluish tint immediately after his birth Oct.
12, 1996.
"His hands were blue, the skin around his eyes, mouth and forehead all were bluish in color," explained his mother, 32, as she leafed through Adam's photo albums. "The doctor said it was because he was premature by eight days, but we suspected something was wrong."
Congenital heart defects are structural problems with the heart that, are present at birth and result when a mishap occurs during heart development soon after conception. Out of 1,000 births, eight babies will have some form of congenital heart disorder. About 35,000 babies are born with a defect each year, according to the American Heart Association.
After Teresa Dysert insisted something was terribly wrong with her baby, the hospital staff gave him oxygen in the form of a plexiglass round dome placed over his head to help him breathe easier.
"It looked like something you'd see in ancient times," Brian Dysert, 35, said. "There laid our tiny little boy under this 'thing.' We felt helpless."
Before the 7 pound, 13 ounce baby was 24 hours old, he was swept from his mother's arms and on his way to Children's Hospital, Dayton, for a closer look by specialists.
"He (Adam) was just two days old when the doctor came out and said, 'Your son has to have open heart surgery,'" Brian Dysert, a Crown Equipment Corp. employee, said. "I had to break it to Teresa who was just released from the hospital herself and on her way down to Dayton with her mom. We had thought there would be some medicine or something Adam would be given and that would be it. We had no idea."
The couple said they were grateful that Adam's heart problem affected only the right side of his heart and not the left where the biggest muscle of the heart lies. So they placed their faith in Dr. Joseph Ross who sent their son to Ann Arbor, Mich., for the surgery that would save his life.
But that wasn't the end of Adam's medical problems.
"The doctor told us that Adam had an 80 percent survival rate and that his heart was the size of eight quarters stacked on top of each other," Brian Dysert said, still in amazement at the doctor's words.
Adam came through the surgery fine, but was mysteriously unable to be taken off the ventilator. Every time the medical staff tried, he gasped for air. No one understood why, the couple said.
On Oct. 31, Adam's doctor suggest he be transferred back to Dayton so the couple could be closer to home. Adam was sent from there to Children's Hospital in Cincinnati on Nov. 13. It was only then, after technicians took a quick look through a scope down his throat, did they discover what little Adam could not tell them. His vocal cords were paralyzed.
During the heart surgery in Michigan, surgeons had nicked the nerve that controls the vocal cords. Adam needed a tracheotomy, the couple was told.
"After all Adam had been through, I was scared to death. A social worker brought us an information packet to read and showed us what a trach looked like," Teresa Dysert said. "I couldn't touch it. How, could something so foreign be put into my innocent child who had already been through so much?"
The next day doctors performed the procedure, opening a hole in the front of his tiny neck which allowed him to immediately breathe easier. Adam finally was able to breathe on his own and three days later he performed another feat that brought joy to his parents' hearts.
"He took his first real bottle," Teresa Dysert said. "It was only about a teaspoon of milk at first, but it was wonderful to see him drink like other babies."
The couple was told they woul dhave to hire 24-hour help to handle their son's tracheotomy care, but they decided they would learn to do it themselves. The day before Thanksgiving Day, they took their son home for the first time. No one had more to be thankful for than they.
"We knew the rough times weren't over, but we were finally home," Teresa Dysert said.
What followed was a three-part treatment for Adam's ongoing heart problem. That meant more surgeries to help redirect blood flow in his tiny body to circulate more oxygenated blood. If he did not undergo the procedures, his lungs would not be able to handle the direct flow of blood the heart was pumping into them, and he would not survive, the couple was told.
By this time, bribery helped the Dyserts get their son to the doctor.
"If Adam promised to cooperate, the nurses let him keep the caps on the (oral medication) syringes for 'rocks' and the end caps on his Intravenous syringes for 'pipes,' which he used for toy construction pieces," Brian Dysert recalled.
First was the Norwood procedure in Michigan, followed in June 1997 by a second open-heart surgery in Cincinnati, and lastly, the Fontain procedure in April 2000, also in Cincinnati.
Following the last successful procedure, the family had even more to celebrate. Adam became a big brother when Evan, now & months, was born "heart healthy," his mother proudly proclaimed.
Adam tolerated his tracheotomy well for nearly three years and actually grew accustomed to the contraption.
"His favorite thing to do was to plug his trach and scream at the top of his lungs," his mother said. "It was music to our ears."
In August 1999, the tracheotomy finally was removed.
"Sometimes, he'll get out of breath on a flight of steps, but for the most part you can't slow him down," his father said as Adam raced from his train track to his race track and back. "He will not be allowed to play contact sports, but other than that, he's fine."
Adam will attend preschool in the fall, his parents added.
"Out of the five children we came to know during Adam's surgery in Michigan, only Adam survived," Brian Dysert said as he lowered his head recalling the families they shared so much in common with. "It really makes you think how precious life is and how blessed we are to have Adam here today."
- Teresa Dysert and other parents of children who have or have had tracheotomy's use a Web site to support each other, share experiences, give advice and tell their own story. The Internet site can be accessed at
www.tracheostomy.com.
