By Linda Scherer
Six week old Lincoln Kelly Schlagel slept in his baby swing, content and peaceful. He is a beautiful little boy, who appears to be just like any baby his age.
But Lincoln was born with a congenital heart defect May 10. He had open heart surgery at just four days old and will need to have heart surgery again before he is eight months old.
His parents, Neil and Susie Schlagel, co-owners of the Blue Note in Winsted, learned of Lincoln’s heart condition through an ultrasound when Susie was five months pregnant.
It was after a second ultrasound to confirm their doctor’s suspicions, that a cardiologist at Abbott Northwestern Hospital told them that their yet unborn son would be born with hypoplastic left heart syndrome (HLHS).
“It was hard to believe and hard to take in, but knowing ahead was better,” Neil said. “A lot of times it is not caught on the ultrasound, but I feel real fortunate for us that it was. The doctors were really good about explaining everything. They give you hope, but give you the reality too.”
HLHS occurs during the first eight weeks of fetal growth when the baby’s heart is developing. The cause is unknown.
It comprises four to nine percent of all children born with congenital heart defects and occurs in up to four out of every 10,000 live births, appearing slightly more often in boys than in girls.
Just 20 years ago there wasn’t a survival rate for babies born with HLHS. They would not live more than a few hours after birth.
Today, the vast majority of children survive and have an excellent quality of life.
Children with HLHS have a combination of related heart problems.
In a healthy heart, there are four chambers two on the right and two on the left. Blood is pumped through these chambers and regulated by valves that open and close.
In HLHS, the left chamber of the heart does not develop, and has valves that do not work properly. Since the left side can’t pump effectively, the right side of the heart must take on double the work and pump to both the lungs and the rest of the body.
Doctors cannot add the missing chambers, but surgically re-route blood flow so the heart will work with only one chamber.
Thanks to this advancement in medical science, Neil, Susie, and their two-year-old daughter, Greta, are able to have Lincoln home with them enjoying this family time together.
Lincoln has even been to a few Winsted ball games since he came home.
“The doctor put a shunt to keep his blood circulating,” Neil said. “They need to keep the blood flowing mainly to get it to his lungs.”
“He is doing really well. He is pretty much like any baby right now until his next surgery,” Neil said. “He has to take medicine for his blood pressure and he takes an antibiotic to protect him from infection.”
There are different variations of HLHS, Susie explained. Lincoln does not fit the exact definition. However, the three open heart surgeries he requires before he is three years old are consistent with treatment for HLHS.
“The main thing this affects is the baby’s breathing,” Neil said. “His oxygen saturation percentage rate for the rest of his life is about 90 percent, where yours is 100 percent.”
Lincoln’s second surgery will be when he outgrows his first shunt at about three to eight months old.
“They try to wait as long as they can for the next surgery without putting him in danger,” Neil said.
His third surgery will be to “retunnel the blood flow” in his heart. That surgery will happen between two and three years old.
For the second and third surgeries, the doctors will know when it is time, because they are monitoring his oxygen levels every month. That way they will know when the shunt is too small.
And Susie is always watching.
“I can tell that sometimes he is a little bit more blue and that he is not getting enough blood flow,” Susie said.
“I know other people can’t see it. His color is good now but it is only going to get worse as the months go on,” Susie said.
The doctors have told the Schlagels that when Lincoln is older he will get winded easier and he won’t be able to play contact sports because of his surgeries, just in case he were to get hit in the chest.
“So no football or hockey,” Neil said. “He can play baseball and golf. He even could play basketball. The doctor said if he wanted to, he would not even stop him from playing basketball.”
The doctors have reminded the Schlagels that this surgery was not even done 20 years ago. They don’t really know all of the possibilities for these children because there are not that many children who are that old yet.
“The doctors did say if nothing would change, Lincoln would probably need a heart transplant by the time he is 18 to 20 years old,” Neil said.
Neil and Susie both feel fortunate for their many family and friends that have been there to lend a hand while Lincoln was in the hospital.
While the bills are still coming in on Lincoln’s surgery, the Schlagels are managing to handle the expense, for right now.
“Susie works for Ridgeview and we do have pretty good health coverage,” Neil said.
“We are waiting to see what the insurance will cover. I know people have talked about benefits, but we are not to that point yet,” Neil said. “I told Susie, ‘Let’s wait and see what all of our bills are going to come to.’”
Lincoln sees his cardiologist every month. The cardiologist wants him to see a pediatrician every other week to keep checking his weight and to make sure everything is going well.