Isabelle Werner

Isabelle Werner knows her heart is special. When other children inquire about the scar on her chest, the 5-year old tells them, "The doctors at Mayo Clinic cracked my chest open and fixed my heart."

Isabelle was born with hypoplastic left heart syndrome (HLHS), a congenital (present at birth) abnormality in which the left side of the heart (left ventricle, aortic valve and aorta) is severely underdeveloped for no known reason. The right side of the heart, then, must pump blood to both the lungs and to the rest of the body functionally taking over for the left side before birth. Like Isabelle, babies born with HLHS become very sick within a few hours to a few days of birth. Without treatment, the defect is usually fatal within the first several days of life.

At an age when children are learning the basics of the 3 R's, Isabelle has already had three open heart surgeries to correct her condition. The three phases of a surgical procedure allow the single pumping chamber of her heart to meet her body's needs for the rest of her life.

But try telling Isabelle to slow down.

"She plays from the time she wakes up till time for bed," says her mother, Robin Werner. "Isabelle lives life to the fullest. She is so strong willed — the strongest 'woman' I know."

Being strong willed has served this Iowa youngster well. Her birth at a hospital in Iowa was full-term and normal. Twenty-four hours later, however, she began to turn gray. She was whisked by ambulance to a different hospital in Iowa, where she had her first surgery at 11 days of age and remained hospitalized for three weeks.

"Being told your baby has a condition that could cause her to die is inexplicably painful," says Robin. "My husband, Mark, told me, 'Things with Isabelle won't be easy. Her life won't be about quantity but about quality.' That sentiment has kept me focused on making sure Isabelle has a normal, happy, good life — just like our other two children — Ray, 16, and Ivy, 10. We feel joy when we see Isabelle acting just like every other child."

When Isabelle's surgeon in Iowa moved out of the country after the second surgery, the family began seeing specialists at Mayo Clinic, where Isabelle had the third phase of heart surgery.

"Carrying my little girl into surgery and placing her on the operating table is just about the most difficult thing I have done," says Robin. "But I trusted in her surgeons and other doctors and nurses and knew they would take the best care of her. It's frustrating to not be able to fix my child's ailment with a bandage or medicine. But Isabelle takes it in stride. As soon as she could talk after her last surgery, she asked for French fries."

During that last hospital stay, big sister Ivy held her fourth annual lemonade stand. She used the proceeds from the stand to give a gift back to Mayo Clinic — in gratitude for helping her sister.

"The unit Isabelle was on shared a wagon with another unit, and she really liked riding in the wagon," says Robin. "So we bought a wagon for the unit and loaded it with a digital camera, a CD player and toys for the children and their families to benefit from."

The Werners give back in another way too. When Isabelle was first hospitalized, the family met a 6-month-old girl who also has HLHS. Mark and Robin now make a point of sharing Isabelle with other families whose babies are diagnosed with HLHS.

"It's scary to be told your baby has a life-threatening condition," says Robin. "It can bring incredible hope and peace of mind to see other children who are thriving despite having this heart abnormality. It's a pleasure to help other families who are going through what we went through."