Herma Heart Center Patient Stories

Watch: Brandon's story

Brandon was born with half of his heart missing, a condition called hypoplastic left heart syndrome. Seven days after he was born, he underwent the first of three surgeries to re-route his blood flow and re-structure his heart. Watch his story:

Caleb, 6

Caleb is an amazing little boy with a big spirit. But, before Caleb was born, doctors had concerns.

When Caleb's mom was just 18-weeks pregnant, doctors learned Caleb had DiGeorge Syndrome. This disorder can lead to complex congenital heart disease. Doctors referred his mom, Bobbi, to Children's Hospital of Wisconsin. The hospital's Herma Heart Center is one of the nation's top 10 centers for kids' heart care.

At just six days old, Caleb had open-heart surgery. By age 2, he had three heart operations. Today, Caleb's family makes frequent trips the Children's Hospital for ongoing studies. These studies help doctors make the best decisions about his health.

Bobbi is glad the hospital cares for the whole family, not just the patient. "I don't know if Caleb would still be with us if it was not for the expertise, experience and the incredible talent they offer," she said.

Caleb was featured as part of the third-annual Push. Pull. Pedal. event Saturday, June, 11, 2011 in Madison, Wis.

 

Amber, 11

While recovering from a few days away from school, Amber collapsed in gym class at Omro Middle School. As she fell to the ground, her gym teacher, school nurse and an off-duty janitor responded by performing CPR and using an AED. The Omro School district public access defibrillation program began in 2003 with the help of Project ADAM. Project ADAM, a program created by Children's Hospital of Wisconsin's Herma Heart Center, is designed to help serve kids through education about life-saving programs to help prevent sudden cardiac arrest.

Amber, who didn't have any pre-existing heart conditions, was flown from a hospital in her hometown to Children's Hospital. Her family learned that she had myocariditis, a condition that occurs when the heart becomes inflamed.

Today, doctors at Children's Hospital are hopeful for a healthy future.

 

Erica, 15 

Erica's family never knew she had a heart condition until she was admitted to Children's Hospital of Wisconsin in 2007 at the age of 11. Even then, they thought she had a double pneumonia. While serious, they weren't expecting her to go into a cardiac arrest just hours after being admitted. But, that's exactly what happened. 
 
"The doctors called us into her room and asked us to say goodbye," said Erica's mom, Judy. "Two of her sisters were on their way to the hospital to join us, but doctors couldn't wait, they had to perform a risky procedure to try to save her life."
 
That procedure was a success. But, Erica still wasn't out of the woods. 
 
Erica was diagnosed with Takayasu's arteritis, a disease that causes inflammation of the aorta, eventually damaging it. Over the next three years, doctors tried their best to treat her condition with medication. In the summer of 2010, it became clear that she would need a heart transplant.  
 
Erica was listed for a heart transplant Oct. 7, 2010. On Nov. 7 she received her new heart. 
 
Today, Erica is making a remarkable recovery. While she still is recovering at home, her stamina and energy level are improving every day.

 

Jenni, 39

Jenni's family knows the impact of congenital heart disease all too well. Jenni was diagnosed with ostium primum atrial defect, a hole in the area between the two upper chambers of the heart, at the age of four. She underwent open-heart surgery at Children's Hospital to repair her heart defect. Her brother passed away at age of 20 due to complications from a congenital heart disease. Her daughter, Cassie, 4, had open-heart surgery at Children's Hospital of Wisconsin after being diagnosed with a congenital heart disorder.

At the urging of her employee and family members, Jenni finally visited her primary care doctor who referred her to Children's Hospital. After a four-hour appointment Michael Earing, MD, learned that she had hypertension as well as coarctation of the aorta (narrowing of the artery). Without treatment, a coarctation of the aorta could have shortened Jenni's life. Jenni underwent surgery at Children's Hospital, the only center in the state with the experience to treat this condition.

Jenni now visits Children's Hospital as an outpatient twice a year for regular check-ups.

 

Heidi, 28

Heidi was first diagnosed with complex congenital heart disease consisting of dextrocardia, double inlet left ventricle that included of the great arteries at birth. This complicated congenital heart disease means that her heart is located backwards, and on the right side of the chest. And, instead of the standard four chambers, she only has three.

"Because my condition is rare, I always need to be monitored and see a doctor regularly," Heidi said. "I appreciate that Dr. Earing is close to home."

While Heidi still is unsure about whether her congenital heart disease will allow her to have children, she is confident that Dr. Earing will leave no stone unturned. In the meantime, she is enjoying a successful life as a clothing product manager for a large retailer.