Look at Chloe Miller’s smile and it’s easy to smile back. Hear about the toddler’s battle for life and it’s easy to understand her family’s commitment to find a cure for the cause behind that battle.
It was during a routine 20-week ultrasound at South Peninsula Hospital that Ron and Melanie Miller learned their unborn daughter’s life might be at risk.
“The tech thought she saw something not quite right with Chloe’s heart,” said Melanie of SPH sonographer Honora Drew’s observation. “So, we went to a specialist at 22 weeks and they found a section of Chloe’s aorta that was a little bit smaller than the rest of her aorta.”
Chloe was diagnosed with coarctation, a narrowing of part of the major artery leading into the heart.
Concerned that labor might begin earlier than the Aug. 7 due date, Melanie and her mother, Dottie Zopp, moved to Anchorage during the 36th week of Melanie’s pregnancy. On July 27, Melanie’s water broke. Ron, who had remained in Anchor Point with the couple’s two older children, passed the childcare to Grandpa Michael Zopp and hurried to Providence Hospital, arriving with three hours to spare.
In spite of the earlier diagnosis, all signs indicated Chloe was OK. Her birth weight was a healthy 7 pounds, 8 ounces and the family was told their new daughter’s stats were normal.
That sense of well-being was short lived, however. An echocardiogram several hours after Chloe’s birth indicated her condition was deteriorating and Chloe was moved to the hospital’s neonatal intensive care unit.
“To say all hell broke loose would be understated,” said Dottie. “Our world was torn upside down.”
Three day’s later, Chloe’s heart was so swollen that each pulse shook her tiny body. The baby and mother were life-flighted from Providence to Randall Children’s Hospital at Legacy Emanuel in Portland, Ore., taking little with them except a prayer quilt made by the Millers’ church family, The Salvation Army.
Once in Portland, Chloe continued to lose ground. The plan for her care was repeatedly revised as the situation worsened. Ron and Dottie arrived in Portland after Chloe was taken into what was expected to be a four-hour operation.
The parents and grandmother checked into Ronald McDonald House, accommodations for families of children receiving medical attention. Four hours stretched to five, six and finally seven as the three “sat in a horrible waiting room,” said Melanie.
Finally, they received word surgery has over and that “when (Chloe) woke up from surgery, she was actually smiling at her doctors,” said Melanie. They also were told Chloe’s condition “was a little unique. Her heart was a lot weaker than they expected it to be, which is why it took so long, but she came through it.”
The surgery left Chloe “extremely swollen, full of tubes and needles and all kinds of things,” said Melanie. Two days after the surgery, the family was forbidden to touch Chloe or her bed “because any time anything moved, there was an increase in her blood pressure and pain. So we had three days of complete hands-off.”
Chloe gradually began improving, however. She was weaned off the tubes, moved to the pediatric unit and her family was finally allowed to hold her.
Although her weight had dropped to 5 pounds, 8 ounces, on Aug. 7, Chloe was determined strong enough for her family to bring her back to Alaska. The following day, she made the journey home to Anchor Point and her eagerly awaiting brother, sister and Grandpa Mike.
For the next three months, Chloe did little more than sleep. Her weight barely reached 10 pounds. Scar tissue began doing exactly what the coarctation had done. So, it was back to Portland, where doctors inserted a balloon to enlarge the baby’s aorta.
Since then, Chloe’s seeming indomitable spirit has continued to surprise those that know her.
“It was pretty nice when, at nine and a half months, she just got up and started walking,” said Melanie.
With her first birthday only days away, Chloe continues taking medication twice a day. An opening between the upper two chambers of her heart may require surgery when she’s a few years older and has put on more weight, but doctors “want to give that every opportunity to close on its own,” said Melanie.
For every 10,000 live births in Alaska each year, more than 200 of those babies have congenital heart defects. Across the United States, the number of those affected soars to 40,000 annually, with about 100-200 dying from unrecognized cardiovascular defects.
In an effort to address those statistics, in 2013, Sen. Peter Micciche, R-Soldotna, introduced Senate Bill 87. It was signed into law in September, and requires congenital heart defect screening for newborns. The legislation became known as “The Nisi Act,” named for Micciche’s niece. Nisi was born in Japan, a country where hospitals routinely perform tests to detect heart defects in newborns and where, after being screened, Nisi was able to receive the treatment she needed.
Earlier this year, Gov. Sean Parnell declared Feb. 7-14 “Congenital Heart Defect Awareness Week.” In his proclamation, Parnell noted “studies have shown that 85 percent of babies born with cardiovascular defects can expect to reach adulthood, and that currently there are (more than) a million adults in the United States living with congenital heart anomalies.”
Mayor Beth Wythe followed suit with a similar proclamation for the city of Homer. It states congenital heart defects are “the most frequently occurring birth defect and the leading cause of birth defect-related deaths worldwide.”
Parnell and Wythe’s proclamations also note that, “…Congenital Heart Defect Awareness Week provides an opportunity for families whose lives have been affected to celebrate life and to remember loved ones lost, to honor dedicated health professionals and to meet others and know they are not alone.”
Without a doubt, Chloe’s family recognizes the key role of dedicated health professionals, beginning with Drew, the SPH sonographer.
“Chloe’s cardiologist told me if he’d known how bad it was going to be, he’d have had me deliver in Portland, and that if it hadn’t been caught beforehand, (Chloe) would probably have been one of those babies that went home and died,” said Melanie.
Chloe’s family and friends have formed “Team Chloe,” and are raising funds to participate in the 2014 Anchorage Heart Walk, benefiting the American Heart Association, Sept. 13. The Heart Walk’s fundraising goal is $145,000. Team Chloe’s goal is $500 and they are currently nearing $250.
One of those that has joined the team is Donna Gibson, who became friends with Melanie when the two worked together in Hayward, Wisc., before the Millers moved to Alaska.
“When I was born, our family was living next door to a family who had a baby born with two holes in his heart. That was in 1962 and there wasn’t anything doctors could do for him,” said Gibson. “He passed away on Christmas eve 1970, at the age of 9. … It had a great impact on our family, as well as theirs.”
That memory, plus her relationship with the Millers inspired Gibson to become part of Team Chloe.
“I’m supporting Team Chloe because it’s just the right thing to do,” said Gibson. “It amazes me everyday the progress that the Heart Association makes. … I never want another family to lose a child from a heart condition again.”
A 25 percent reduction in coronary heart disease, stroke and risk was achieved by the American Heart Association between 1999 and 2010, according to information provided by the AHA. A new goal now focuses on helping people build stronger health and better quality of life.
“It’s shocking how little is really known about congenital heart defects,” said Dottie. “We’ve got to fund the research, do the Heart Walk, raise the money. … We will make a difference. We’ve got it.”
• Online donations can be made to Team Chloe at anchorageheartwalk.org, click on “Team Chloe”
• Purchase a $20 “Team Chloe” T-shirt online at booster.com/teamchloeak.
McKibben Jackinsky can be reached at firstname.lastname@example.org.