Community stepping up for Coast family ahead of infant’s open-heart surgery
At first glance, Lainey West is a healthy 5-month-old with a big pink bow, bright outfits and a quick smile. But in a few weeks, Lainey will travel to California for a 14-hour, open-heart surgery.
Lainey has a congenital heart defect that restricts blood flow from her heart to her lungs. Without treatment, the condition can be life-threatening.
To raise funds for her procedure, Biloxi native Donnie Handler is hosting a fish fry at Butcher Distributors on June 12, where community members can purchase meals and win door prizes.
The West family
Lainey’s mother, Cassidy West, said doctors diagnosed Lainey at about 25 weeks of pregnancy with Tetralogy of Fallot with pulmonary atresia and MAPCAs.
“It was devastating for me. I just didn’t know what to expect or if she was going to live,” Cassidy said.
Lainey’s defect is the most extreme and complex variant of Tetralogy of Fallot — because she was born without a functional connection between her heart and lungs, her body developed a web of arteries to transport deoxygenated blood.
“When she cries, she’ll turn blue because the oxygen drops really low,” her father, Lance West, said.
Babies with the condition often need surgery before 6 months of age. The procedure, called unifocalization, joins arteries to build a new pulmonary artery system. Lainey will have her surgery July 12 at Stanford Medicine Children’s Health in Stanford, California.
According to Cassidy, the surgery could last up to 14 hours and is expected to be followed by at least a month of in-patient monitoring.
“If you look at her, and you play with her, she’ll be smiling. But then you realize that if she doesn’t have the operation ... that they don’t survive, and it’s kind of a hard thing to comprehend,” Lance said.
After Lainey’s diagnosis, her family started fundraising. Each weekend, Cassidy and Lainey’s sisters, Ensley and Emersyn, run a lemonade stand outside their home in Gulfport. Cassidy also raises money through GoFundMe and by selling desserts, T-shirts and spaghetti plates.
“People are very generous … but it’s just tough,” Cassidy said. “It’s just scary, and then you have to worry about going across the country.”
While Cassidy takes care of their three daughters, Lance works at the Marine Spill Response Corporation. Soon, he will take on more responsibilities at home while Cassidy travels with Lainey to California.
Cassidy and Lance said they cope by bringing their kids to the park or visiting their grandmother. Lance said he finds comfort in making jewelry and playing his favorite heavy metal songs for Lainey.
“Hopefully she likes her dad’s heavy metal rock music,” Lance said. “I want somebody to go to concerts with me.”
A familiar story
According to the Centers for Disease Control and Prevention, congenital heart defects affect nearly 1% of births in the U.S. each year.
Lainey’s family is one of many on the Coast navigating congenital heart defects.
Lisa Northrop is a head coordinator for the Mississippi Gulf Coast chapter of Little Mended Hearts, a national nonprofit dedicated to families of children born with heart defects. She said her daughter’s four open-heart surgeries prompted her to join the program.
“My daughter was actually predicted not to walk and talk, and she just graduated high school,” Northrop said. “There’s always hope in this.”
For Donnie Handler, Lainey’s diagnosis hit close to home. In 2009, Handler’s son had the same surgery that Lainey will undergo in July.
“He was born with four holes in his heart,” Handler said. “If you don’t get it corrected, it’s called blue baby syndrome.”
Handler met the West family while they were selling spaghetti plates to raise money for Lainey’s surgery. From there, the two families found they had much more in common beyond their childs’ condition.
“It’s amazing that even though the Coast continues to grow, everyone is still connected,” he said. “The circle just kind of started getting smaller and smaller and smaller … and that’s where it took off.”
When Handler’s son was preparing to undergo surgery, his family and friends came together to raise nearly $10,000 for his family. Now, Handler wants to do the same for Lainey.
“Our community came together in a big way for us, and we just want to pay it forward in the same way,” he said.
Handler and his wife are organizing a fish fry at Butcher Distributors on June 12. The fish fry will feature $10 plates, door prizes and sports memorabilia and will go from 11 a.m. until supplies last.
Handler said that, above all, his son’s experience with Tetralogy of Fallot has shown him the strength in community.
“No matter what we do, it’s like the Mississippi Gulf Coast always steps up, and I’ll never forget that for my entire life,” he said.
