Tenacious 5-year-old survives heart disease
Story by Lindsey Wells, photography by Grace Brown
F ive years ago, Jennifer Smith held her newborn daughter, Adelie, in a physician’s office as her family found out that she had been born with a ventricular septal defect, a hole between the bottom two chambers of her heart.
They were immediately sent for an MRI. Six months later, after the family became especially familiar with the inside walls of Arkansas Children’s Hospital, Adelie was in surgery.
According to the American Heart Association’s website, in normal development, the wall between the chambers of the heart closes before the baby is born, so that by birth, oxygen-rich blood is kept from mixing with the oxygen-poor blood. When the hole does not close, resulting in VSD, it may cause higher pressure in the heart or reduced oxygen to the body.
Because of this defect, Adelie was diagnosed with failure to thrive, which is defined as decelerated or arrested physical growth and is associated with poor developmental and emotional functioning.
“She was failure to thrive because her heart was working so hard to breathe and everything. That’s one thing, out of all of this, everything that’s happened, the one thing that I’ve learned is that a problem with your heart can cause so many other problems,” Jennifer said.
Before it was decided that Adelie needed to have surgery, the family rushed her to the emergency room when she began projectile vomiting and became lethargic.
“We had no idea what was going on. She had no fever, she didn’t look sick or act sick. She was only 5 months old. I guess the physician that was in the emergency room called her cardiologist and I remember being told in the emergency room, ‘She’s probably going to need to have surgery within the next week.’ So she was admitted from there, then they put her on an NG tube and we were sent home,” Jennifer said.
A nasogastric tube (NG tube) is used for feeding and administering drugs and runs through the nose, past the throat, and down into the stomach.
“I had to learn how to feed the tube down the back of her throat, which was difficult,” Jennifer added. “We were sent home on the NG tube and she had a little feeding pump that she had to be on in the middle of the night. Within a week I had a visit with the actual surgeon and the very next day she had surgery.”
A corrective surgery was performed to correct the hole between the left and right ventricles of Adelie’s heart. Jennifer said a Teflon-like material was used to patch the hole.
“The surgeon actually brought us out a piece of the material just so we could see, have a visual of what they were putting on there. They just sewed it around the hole,” she said. “We’re not supposed to have to go in to have any more surgeries but if her heart was to grow and the material didn’t stretch out — your heart is a muscle and it’s supposed to grow around that material, but if it were not to grow around it then they have to go back in there just to patch it back up.”
Now, Adelie is a happy, healthy 5-year-old who enjoys tap dance, ballet, and gymnastics.
“She’s pretty bossy so she likes to get out there and hang out with the big girls,” Jennifer said, laughing.
Because of her fight against congenital heart disease, Adelie was chosen to be the featured survivor at the 2018 Hot Springs Heart Ball, set for Feb. 24 in Horner Hall at the Hot Springs Convention Center.
This year, the Heart Ball will be presented by National Park Medical Center and chaired by Brian and Michelle Bell. This elite, black-tie event features prominent members of the health, philanthropic and local business communities and is one of the premier American Heart Association fundraising events, both locally and across the nation.
This year’s event will feature dinner, silent and live auctions, entertainment, and the presentation of the Hot Springs Sweethearts, a group of high school sophomore and junior young ladies from the Garland County area who spend four months devoted to heart-healthy lifestyles and learning about cardiovascular disease.
“Every year, the Sweethearts program grows and evolves and we are proud to have been a part of the Sweethearts program since it began 12 years ago,” Mandy Golleher, NPMC’s director of communication and marketing, said in a news release. “Every year these young ladies dedicate so much time and effort into learning more about heart disease and then carrying out a heart healthy lifestyle. We see so many young women leave this program with a passion for health care, with many going into nursing school, radiology programs and even some in medical school. It is also our pleasure to continue our work with the Hot Springs Sweetheart founders, Paul and Kathryn Russell, who pour their heart and soul into the Sweethearts program every year to bring education and awareness to these young ladies against the No. 1 killer among men and women — heart disease.”
The Russels began the Sweethearts program 12 years ago in memory of their daughter, Caroline, who died at the age of 2 of a possible undetected heart condition.
The Sweethearts have each composed a paper about cardiovascular diseases, which will be graded by interventional cardiologist Dr. Troy Norred. The Sweethearts are scored on their paper, their volunteering hours and their dedication to the Sweetheart lifestyle throughout the four-month period. On the night of the Heart Ball, the one Sweetheart who scores the highest in the program will be named “Sweetheart of the Ball” and awarded the $2,000 Caroline Grace Russell Memorial Scholarship and a piece of custom “sweetheart” jewelry by Lauray’s — The Diamond Center.
The 2018 American Heart Association Sweethearts are Taylor Bell, Sydney Blount, Savannah Brown, Mary Madelyn Butler, Isabella Calhoun, Makayla Chapmond, Mary Catherine Cowen, Hattie Anne Douglas, Alaina Edwards, Jaycie Gibbs, Bailey Gibson, Alexia Giombetti, Ellie Glover, Georgia Gooch, Caitlyn Gordon, Staley Graves, Riley Green, Sophia Hardin, Emma Hickok, Katherine Horner, Hayzley Irwin, McKinley Jackson, Jessica Jennings, Abigail Kinder, Olivia Lawrence, Abby McMahan, Cassidy Miller, Claire Monte, Kaitlyn Peters, Chloe Porter, Ainsley Rottinghaus, Molly Stineman, Haley Strozyk, Swan Swindle, Aryanna Tapp, Ashton Toland, AnnMarie Van Oversteeg and Kendell Webb.
Sharon Lanier, director of the Hot Springs Heart Ball, said that they expect attendance at this year’s event to be close to 800.
“February is National Heart Month and it’s all about creating awareness about heart disease and how, as a community, we can come together to help support those who do deal with heart disease and also educate people about things that they can do to prevent heart disease. The Heart Ball is really just a night of fun and bringing together the community, and certainly it’s a fundrais- er for the American Heart Association,” she added.
All of the funds raised during the event will go directly toward American Heart Association programs and funding research that helps to develop treatments for heart disease.
On choosing Adelie as the featured survivor of the 2018 Heart Ball, Sharon said, “Each year we look for a person that has survived either a congenital heart defect or heart disease. Adelie was born with a congenital heart defect and underwent open heart surgery. It’s just really a testament to what the AHA has done over the history of our existence in that we actually provide the research and the treatment options that help the doctors diagnose heart defects, and then how to treat them.
“We look for someone who has actually been through that process so that we can help put a face to it, because many people know someone who’s been affected, or maybe they don’t. When you see Adelie and see her story and you get a chance to meet her at the Heart Ball, it really helps those who don’t really understand it to connect more with the mission of what we do.”
Heart Ball tickets are $150 and may be purchased online at http://www. hotspringsheartball.heart.org. The event begins with a reception and silent auc-
tion at 5:30 p.m., followed by dinner at 7 p.m. and entertainment by DJ Hollywood beginning at 9:30 p.m.
NPMC is participating in another event with the American Heart Association this year called Little Hats, Big Hearts.
Little Hats, Big Hearts is the American Heart Association campaign, in connection with The Children’s Heart Foundation, to collect knitted or crocheted red baby hats. The hats are distributed to babies born in hospitals across the country during February.
Sharon said the volunteer program is meant to raise awareness about heart disease, the No. 1 killer of Americans.
“Congenital heart defects are the most common type of birth defect in the country and a lot of people don’t realize that, how many little ones are born with some type of heart murmur or other heart defect. The Little Hats, Big Hearts program brings together volunteers and hospitals to distribute these precious little red hats during the month of February,” she added.
The Little Hats, Big Hearts program began in Chicago in 2014 and is now in 40 states across the country. Beginning in the fall of each year, volunteers knit the hats, which are then laundered and packaged and delivered to participating hospitals.
Approximately 2,200 red hats were delivered to hospitals in Arkansas this year.
Adelie, right, with her mom, Jennifer Smith.
Several of the 2017 Hot Springs Sweethearts rehearse one of two dances performed during their presentation at the 2017 Heart Ball.