Heart-shaped cards. Heart-shaped boxes of candy. Heart-shaped balloons. All trappings of heartfelt celebrations centered around Valentine’s Day.
For Melanie Miller and her husband, Ron, their heart reminder comes in the shape of their 18-month-old daughter, Chloe, who was born with a congenital heart defect, or CHD.
An ultrasound done at South Peninsula Hospital during Melanie Miller’s 20th week of pregnancy indicated “something not quite right with (Chloe’s) heart,” said Miller. Follow-up by a specialist two weeks later identified one section of the aorta to be smaller than the rest.
In spite of concerns, however, when Chloe was born July 27, 2013, at Providence Alaska Medical Center in Anchorage, she weighed 7 pounds, 8 ounces and seemed in perfect health. An echocardiogram several hours after her birth showed that was not the case. With her condition deteriorating, the infant was moved to the hospital’s neonatal intensive care unit.
Three days later, one side of Chloe’s heart had become so enlarged that her body shook from its pulse. Miller and her newborn were life-flighted to Randall Children’s Hospital at Legacy Emanuel in Portland, Ore. In a seven-hour operation, doctors addressed Chloe’s coarctation of the aorta, a narrowing of the major artery carrying blood to the body, one of many types of heart defects.
In August 2013, Chloe was finally able to go home. However, when scar tissue began blocking her aorta, she made a return trip to Portland and doctors inserted a balloon to enlarge the narrowed area.
Since then, Chloe sees doctors on a regular basis, undergoes occupational therapy, takes daily medications and her family anticipates additional surgery in the future. In spite of her health issues, the lively youngster began walking at nine months and continues to keep her family on their toes.
“It’s interesting to see this hasn’t slowed her down. I thought it would, but she just goes,” said Miller.
CHD is the leading birth defect of babies born in the United States, affecting nearly 40,000 babies a year, according to statistics provided by the Children’s Heart Foundation. At Monday’s regular meeting of the Homer City Council, Mayor Beth Wythe proclaimed this week, Feb. 7-14, Congenital Heart Defect Awareness Week. Miller, her husband and three of the family’s children — Katie, 6; Colton, 4; and Kenzie, two months — were on hand to receive the proclamation. Chloe, who has pneumonia, was with her grandparents, Dottie and Michael Zott.
Since Chloe’s birth, Dottie Zott has become a passionate advocate of spreading the word about CHD. She organized Team Chloe to walk in the 2014 Heart Walk in Anchorage, a fundraiser for the American Heart Association. Team Chloe T-shirts can be ordered for $20 each online to help the team’s fundraising effort. Zott and Miller also make and sell scented bath and shower bombs, sometimes called fizzies.
“I find every opportunity I can to talk to people,” said Zott, who is organizing Team Chloe for a repeat performance at the Anchorage Heart Walk on Sept. 26. “It was so much fun. Oh my goodness, we are looking forward to doing it again.”
Part of the walk’s value was connecting with others in similar situations.
“A lot of people don’t understand what this is like,” said Miller. “Most people are like ‘this won’t ever happen to me,’ but when it happens to you, it’s hard. It’s something (Chloe) will deal with her entire life.”
Jo Johnson, the Homer city clerk, knows all too well what the Millers are experiencing. Born in 1962, Johnson’s brother, John, was diagnosed with CHD at birth. Two months later, he also was diagnosed with Down syndrome. At three years old, he underwent open-heart surgery.
“It slowed him down to the point that he had poor circulation and tired easily, but he knew his limitations,” said Johnson of how CHD affected her brother. “Whenever he needed to, he’d stop, go to the floor and pull his legs up to his chest. He knew how to deal with it.”
With one in 150 adults expected to have some form of congenital heart disease, it’s no wonder the list includes some famous names and faces. Among them are Olympic snowboarding gold medalist Shaun White, actor and former California governor Arnold Swarzenegger and singer Marilyn Manson.
Increasing attention to heart health beyond one week, the Centers for Disease Control and Prevention announced February as American Heart Month. With heart disease the second leading cause of death among Alaskans and the leading cause of death on the southern Kenai Peninsula, South Peninsula Hospital is offering two heart screenings, each at $99, during February. One is a blood test that screens for cholesterol, cardiac risk, anemia and diabetes. It requires no appointment or referral, but registration and pre-payment are required. The other is a cardiac scoring CT scan, a 15-minute procedure that scores calcium buildup in the arteries and does require a physician referral, as well as an appointment and prepayment.
The hospital also is holding a “Gambling With Your Heart” free, public forum at the Alaska Islands and Ocean Visitor Center, at 6 p.m. Feb. 19.
“It features Dr. George Rhyneer, a visiting cardiologist, and Doug Duncan, the hospital pharmacy director, discussing how to increase your odds for staying heart healthy,” said Bonita Banks, the hospital’s health and wellness educator.
Rhyneer was one of the founders of the Alaska Heart Institute, is retired from practice, but continues to work for specialty clinics, including one at SPH.
“The forum is geared toward adults and not just people with cardiac issues, but anyone interested in maintaining their health, knowing preventive care for the heart and also information on strokes, how to identify and how to treat quickly,” said Banks.
For Miller, understanding her daughter’s heart is an ongoing process.
“She still has a seven-millimeter hole in her heart. Every time we go to the doctor, I hope it’s gotten smaller, but it hasn’t,” said Miller.
Her advice to others is to do what she’s doing: keep learning.
“Ask the doctor lots of questions,” said Miller. “There is no such thing as a stupid question.
“Knowledge is power,” said Johnson.
McKibben Jackinsky can be reached at firstname.lastname@example.org.
South Peninsula Hospital offers reduced-rate heart screenings, heart-health forum during February
• Cardiac scoring CT scan: non-invasive, 15-minute imaging procedure that scores calcium buildup in the arteries; physician referral, appointment and prepayment required; $99; for information, contact SPH Imaging, 235-0363.
• Heart health blood test: screens for cholesterol, cardiac risk, anemia and diabetes; no appointment or referral necessary, but registration and prepayment are required; $99; for information, contact SPH Laboratory, 235-0338.
• “Gambling With Your Heart,” a free, public forum with Dr. George Rhyneer, a visiting cardiologist, and Doug Duncan, SPH pharmacy director; at Alaska Islands and Ocean Visitor Center, 6 p.m., Feb. 19.
For more information:
Team Chloe on Facebook: Team Chloe AK
Team Chloe T-shirts: booster.com/teamchloeak2
Bath and shower bombs: Dottie Zott, 299-8255
2015 Anchorage Heart Walk, Sept. 26: heartwalk.kintera.org/faf/home/default.asp?ievent=1126377
2015 Alaska Heart Run, April 25:
South Peninsula Hospital heart screenings:
American Heart Association: heart.org