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These inspiring stories from parents, siblings and caregivers help illustrate how passionately connected they are when focused on saving or enhancing the life of a child. Thanks to these strong relationships and excellent care, the vast majority of families who responded to our satisfaction surveys rate their care as a 9 or 10 (out of 10).
Vincent: The kid with the Berlin Heart
When Vincent was 6 years old, his heart began to fail. While he waited for a heart transplant, specialists in our Herma Heart Institute used a Berlin Heart — an innovative treatment that provided him enough time to finally receive the “perfect” heart that saved his life. Now 17 years old, Vincent is living life to the fullest.
Harli’s pulmonary hypertension care helps avoid transplant
Harli’s parents looked nationwide for help with her pulmonary hypertension before finding the expertise she needed at Children’s Hospital of Wisconsin. Harli’s family came from Illinois to tap into the expertise of Dr. Edward Kirkpatrick and Children’s Pulmonary Hypertension Program, one of only four pediatric center in the United States — and the only one in Wisconsin — to be accredited with the highest designation by the Pulmonary Hypertension Association (PHA). Learn more about Harli.
Antonio goes home with a new heart
Antonio Dawson was with us at the Herma Heart Institute for 233 days, more than seven months, while he waited for a heart transplant. That's a long time for anyone, but just imagine how that must seem to a 4-year-old! It was an emotional day for all of us when Antonio finally got to go home, with everyone from doctors, nurses, fellow patient families, administration staff, parking valets – you name it – wanting to make sure they got a chance to say farewell. Read more on our blog.
Brandon beats hypoplastic left heart syndrome
Brandon was born with half of his heart missing, a condition called hypoplastic left heart syndrome (HLHS). Seven days after he was born, he underwent the first of three surgeries to reroute his blood flow and restructure his heart. The Herma Heart Institute has the best published survival rates worldwide for treating HLHS.
Pearce was born with hypoplastic right heart syndrome (HRHS). After his birth, he had the first of three heart surgeries at the Herma Heart Institute. Today he's a growing, active boy and receives his follow-up care at a Children's location just 20 minutes from his Greenville home in Northeast Wisconsin.
Oliver's life-saving heart surgery
Born with a rare heart defect, Oliver had life-saving heart surgery at our Herma Heart Institute. Today, he's pure energy and laughter, racing through the day with his brother and sister. As his sister tells it, Children's Hospital of Wisconsin made Oliver "very much better." Children's Hospital of Wisconsin consistently achieves among the highest reported survival rates in the nation for pediatric heart surgery.
Lucas' surgery corrects a hole in his heart
No parent ever wants to hear their newborn baby has a hole in his heart. Amy and Brian Randall faced this difficult diagnosis when their son Lucas was found to have a congenital heart defect. Lucas underwent successful open-heart surgery in our Herma Heart Institute, followed by a stay in the cardiac intensive care unit.
Adult Congenital Heart Disease: Jessica's story
As a 23-year-old woman with no kids, Jessica Sumter knows she might look a little out of place in the waiting room at Children's Hospital of Wisconsin's Herma Heart Institute. But the truth is, she's right where she needs to be.
After all, she's been coming here her whole life. Read Jessica's story.
Ava was diagnosed with transposition of the great arteries/vessels (TGA or TGV)
Even in the few minutes after little Ava was born, everything seemed fine. But she wasn't crying very loudly and her color was a bluish/purple that wasn't getting any better. Ava was diagnosed with a congenital heart disease known as transposition of the great arteries/vessels (TGA or TGV), where the aorta and pulmonary artery are switched, connecting the aorta to the right ventricle instead of the left. Read Ava's story.
Gavin was born with truncus arteriosus, a rare heart defect
Just hearing Becky Verbos list all the different specialists she had to take her son Gavin to see in his first few years of life can be daunting. There were regular appointments with doctors from cardiology, ENT, audiology, genetics, asthma/allergy, pulmonology and urology. All this, in addition to the little guy needing to have heart surgery at just 21 days old.
Thankfully, she was able to get everything done at the same place: Children’s Hospital of Wisconsin. Read Gavin's story.
Claire's family travels from Iowa to treat her heterotaxy syndrome
Nick and Sue Honkamp sought more specialized expertise than what was available at their local hospital in Des Moines, and that eventually led them to Drs. Peter and Michele Frommelt at Children’s Hospital of Wisconsin. Having developed a reputation as an institute of excellence for the treatment of congenital heart defects, Children’s has attracted patients from around the world.
It wasn’t long before the Honkamps knew they had found the right place.
Jack makes history with HVAD
Jack Radandt was 11 years old and in need of a heart transplant. Born with hypoplastic left heart syndrome (HLHS), meaning his left ventricle was severely underdeveloped, Jack had already undergone heart surgery at age 2.
Life was relatively normal after that, although his parents, Missy and Jason Radandt, knew at some point their son most likely would need a new heart. Yet it was still a shock nine years later when, despite not showing many symptoms, they were told Jack was in heart failure. He would eventually get his heart transplant, but not without making a little history first.
Caleb's heart surgeries and DiGeorge syndrome
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. Our Heart Institute is one of the nation's top institutes 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 to our hospital for ongoing studies. These studies help doctors and his family make the best decisions about his health. Our Developmental Follow-up Program, the first in the country, helps children who have had heart surgery manage possible developmental challenges to which they are prone.
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.
Amber's heart restarted with help from Project Adam
While recovering from a few days away from school, Amber collapsed in gym class at Omro Middle School in east-central Wisconsin. 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 nationwide initiative created in 1999 by our Herma Heart Institute, is designed to save lives by helping schools make AEDs available and educating staff about their use.
Amber, who didn't have any pre-existing heart conditions, was flown from a hospital in her hometown to Children's Hospital of Wisconsin. Her family learned that she had myocariditis, a condition that occurs when the heart becomes inflamed.
Today, our doctors are hopeful for a healthy future.
Erica's heart complications lead to transplant
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. We are one of the nation's highest volume pediatric heart transplant programs and the only one in Wisconsin.
Jenni's congenital heart defect prompts surgeries as child and adult
Jenni's family knows the impact of congenital heart disease all too well. Jenni was diagnosed with ostium primum atrial septal 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 of Wisconsin 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 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 the Children's Hospital Adult Congenital Heart Disease Program. After a four-hour appointment with Michael Earing, MD, program director, Jenni learned that she had hypertension caused by coarctation of the aorta (narrowing of the artery). Without treatment, coarctation of the aorta could have shortened Jenni's life. Jenni underwent surgery at Children's Hospital, which offers one of the few adult congenital heart disease programs in the country.
Jenni now visits Children's Hospital of Wisconsin as an outpatient twice a year for regular check-ups.
Heidi's backward heart requires expert life-long care
Heidi was born with a complicated combination of heart defects, which means that her heart is located on the right side of the chest (dextrocardia) with only one pumping chamber (double inlet left ventricle). And, instead of the standard four heart 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 Michael Earing, MD, medical director of the Herma Heart Institute Adult Congenital Disease Program, will leave no stone unturned. In the meantime, she is enjoying a successful life as a clothing product manager for a large retailer.
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Ranked #5 in the nation
U.S. News & World Report has once again ranked the Herma Heart Institute at Children's Hospital of Wisconsin among the top ten in the nation for pediatric cardiology and heart surgery. This ranking reflects the excellent outcomes and care we provide for even the most complex heart conditions. Families travel from across the country, and even around the world, to receive care from our specialists who are experienced in treating congenital heart disease from before birth and into adulthood.