Heart Birth Defects Are #1 Birth Defect, but Survivable
Mila Rose on her 1st Birthday!
Cardiovascular disease (CVD) is the No. 1 killer of all Americans. In fact, someone dies from CVD every 39 seconds. Heart disease also kills more women than all forms of cancer combined. Congenital heart defects are the most common cause of infant death from birth defects. The American Heart Association invites the public to join the October 1st Heart Walk event at Kensico Dam to join the fight against heart disease, fund research, and help save lives. Registration is open online at www.westchesterheartwalk.org.
The Heart Walk is the AHA’s biggest annual event, raising more than $400,000 for AHA programs and research at last year’s event. Funds raised at the Heart Walk will support research to help prevent and treat heart disease, stroke, and pediatric heart disease.
Congenital heart defects, or CHD, affect nearly 1% of―or about 40,000―births per year in the United States. Early detection, advances in science and treatments of congenital heart defects help save lives. The Konow family of Ossining is grateful for early detection and advanced treatments for CHD. Their baby had lifesaving open heart surgery on the day of last year’s Heart Walk. They are sharing their story to raise awareness and will be honored at this year’s event.
Kailey and Ryan Konow showed up for their 20-week prenatal appointment with the anticipation and excitement of any expectant parents. The doctors confirmed they were having a girl—but that she had a rare congenital heart defect. Further tests confirmed her diagnosis: a double outlet right ventricle VSD, or ventricular septal defect (holes in the heart), and pulmonary stenosis, or narrowing of the heart artery. The doctors said she would need open heart surgery–it was just a matter of when.
Because of early detection, the neonatal intensive care unit team was ready and waiting to care for Mila Rose when she was born on August 3, 2016.
“My husband and I got to hold her for only a couple of minutes before she was whisked away to begin her tests,” said Mila Rose’s mother, Kailey, “After five days in intensive care, we took her home to get her strong for her impending surgery.”
After two months, they noticed the soft spot on her head was sunken, and took her to the pediatrician. By the time they arrived, Mila Rose’s eyes, mouth and lips were blue. Her oxygen levels were dangerously low and she was sent to the emergency room. A simple common cold caused her fragile heart to work overtime. Three days later, she was released, but within the week, the same symptoms returned, but worse.
“It was the scariest event yet. Her oxygen levels dipped and they needed to intubate her with a breathing tube and put her in a coma so her heart would stop working so hard,” she said.
Mila Rose had emergency heart surgery to have a shunt placed in her narrowed artery, but the other defect would require additional surgery in the future. Post-surgery, she was kept isolated at home to minimize the risk of illness. On January 6th, she had the surgery for her full heart repair, and went home after 15 days, her heart fully repaired.
“At first, we couldn’t believe this was happening to us. Why did they have to find something? Now we are so grateful for the technology and research that allowed the early detection. We’re so grateful for the doctors who continually focused in on her diagnosis and were always ready for her. She will be closely monitored for her cardiology team for the rest of her life, but her future is bright and our hearts are full,” said Konow.
CHD is the most common heart birth defect but it is survivable—the AHA journal Circulation that estimates about 1 million children and 1.4 million adults in the United States were living with a congenital heart defect (CHD) in 2010. The American Heart Association’s funding for pediatric cardiac research is second only to the federal government. Learn more at www.heart.org. Money raised at events like the Heart Walk help fund research.
The Heart Walk is sponsored by White Plains Hospital, WMC Health/Maria Fareri Children’s Hospital, Fujifilm, Dr. Patrick W. Thomas and Mrs. Johanna D. Thomas, New York Presbyterian, Phelps Hospital/Northwell Health, New York Medical College, Stop & Shop, Examiner Media, The Peak, Buzz Creators, News 12 Westchester, and Westchester Magazine.