SALT LAKE CITY (ABC4 News) It is Congenital Heart Disease Awareness Week and doctors are helping to bridge the gap for heart patients from infancy to adulthood.
The condition is the most common birth defect that happens one in 100 births.
These patients often face uncertainty when they grow up to be adults because of a gap in care. But a new partnership will help patients continue the same level of care through their lifetime.
Tiffany Passow of Ogden was born with multiple heart defects. Doctors at Primary Children’s Hospital saved her life.
“The doctors gave me a 10 percent chance of surviving the surgery.”
She’s already undergone several open heart surgeries and will need continuous specialized care.
“I’ll never be fixed. I’ll never be cured, but I can maintain a great quality of life as long as I take care of myself and I get the follow up that I need.”
That’s why a new partnership was formed with Primary Children’s Hospital, University of Utah School of Medicine, University Hospital and Intermountain Medical Center.
Dr. Arvind Hoskoppal, the director of the Utah Adult Congenital Heart Disease Program says this allows people born with Congenital Heart Disease or CHD to have access to continuous, specialized care from childhood through adulthood. It becomes the first of its kind in Utah and surrounding states to be accredited by the Adult Congenital Heart Association.
“It’s extremely important. I couldn’t stress more. There is research that shows patients with CHD who don’t have follow up have far worse outcomes as far as quantity and quality of care and when they make it back to the medical system they are far sicker,” said Hoskoppal.
Patients born with CHD may have different anatomy from someone who develops heart failure or a stroke.
“They’re born with different plumbing with how the blood gets around the heart and pumps throughout the body,” said Hoskoppal.
The survival rate of these patients into adulthood has rapidly increased. But Dr. Hoskoppal says most of the 8,000 adults living with a heart defect in Utah are not receiving follow-up care and the same goes for the many more across the country.
“There are more than 1.4 million adults living with Congenital Heart Disease and that exceeds the number of children with CHD,” said Hoskoppal.
But Tiffany did receive care as an adult right here at Primary Children’s and far exceeded what doctors expected. She now has her own family giving birth to two children.
Women with heart defects sometimes cannot have children because of the high-risk pregnancy.
“I was told don’t ever get pregnant without consulting us first. I don’t know if you’ll be able to have a pregnancy. I wouldn’t be here without this program without maintaining the follow up that I did. I would not be here. I probably would not have survived into adulthood,” said Tiffany.
This partnership becomes the first of its kind in Utah and surrounding states to be acredited by the Adult Congenital Heart Association. There are only 20 other programs nationwide to receive this highest level of accreditation.