HAYESVILLE, N.C. – Already, Elsie West’s story has brought multiple communities together to rally behind her – and she’s less than 2 months old. Elsie’s story has gained traction not just in her hometown of Hiawassee, but around the world.
That rallying support manifested most recently with the “Mending Elsie’s Heart 5K” at Chatuge Dam Trail on Saturday, April 11, where more than 100 participants signed up to help the family raise money for ongoing medical expenses.
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First, some information about Baby Elsie. Mom Caitlyn West said her birth on Feb. 16 “couldn’t have been better,” and all appeared to be well. But a few days after coming home, Caitlyn and her husband Colton discovered that Elsie was having difficulty breathing.
By the time they arrived at the ER of Union General Hospital, her tiny body had already gone into shock, and what her parents suspected may have been COVID turned out to be something much more complex.
“They had taken an X-ray and discovered that her heart looked bigger than it should have, and it looked like there was fluid on her lungs,” Caitlyn explained.
Despite her dire condition, Elsie couldn’t be flown out that night due to weather conditions, so she went by ambulance to Children’s Healthcare of Atlanta, all the while monitored by a team of specialists to keep her stable. From there, she was transported to the cardiac intensive care unit at Arthur M. Blank Hospital.
Elsie was diagnosed with hypoplastic left heart syndrome, a rare and severe condition where the left side of the heart is underdeveloped and can’t pump blood properly. In Elsie’s case, the left ventricle of her heart formed but did not grow to the size it needed to be by birth.
Additionally, Elsie’s aortic valve is smaller and thicker than average, and her mitral valve is thickened. On top of that, her aortic arch is narrower than it should be.
“I forgot what the odds of it happening are, but it’s very rare and it’s a lot to think about, that God chose us to be her parents,” Caitlyn said, acknowledging the tremendous blessing that their little girl and her 2-year-old big brother Cash are to the family.
Elsie has already undergone one surgery, known as the Norwood procedure, to try and restructure her heart. Surgeons inserted a shunt from her right ventricle to her pulmonary artery to allow for healthier blood flow to the lungs and removed the atrial septum.
The way Caitlyn described her daughter’s condition is that “her whole body is relying on the right side of her heart to keep going.” The Norwood procedure was just the first of three surgeries that Elsie will have to undergo in the coming years.
Currently, Elsie receives medications and nutrition via a feeding tube that passes through her nose to her stomach; the tube is necessary because the reduced blood flow means that some bodily systems are “prioritized” by the heart over others. The brain, for example, may take precedence over the digestive system.
To prepare for the second surgery, Elsie must gain more weight. In the meantime, she visits the cardiologist every week. She has gotten so used to her appointments that she has started to fall asleep during echocardiograms.
“She does really good with it, she really does,” said Caitlyn, proud of her fighter. “She’s been intubated and extubated probably three different times throughout her life already, had one heart surgery – going to have hopefully just two more by the age of 5, and she might go back to having full use of her heart.”
A heart transplant could be in Elsie’s distant future, and while there are many questions still up in the air about what her heart is and isn’t capable of, the good news is that she has the possibility of a full life so long as her condition remains monitored.
At any rate, Caitlyn was told that her daughter is “on the better side of worse,” meaning that some children have been born with left ventricles even smaller than Elsie’s. What’s more, Elsie’s case is so unique that doctors will be learning from her care.
“I don’t understand why God chose us as her parents, but I’m so thankful she’s here and doing good. She loves her big brother,” Caitlyn divulged with a laugh. “She takes deeper little breaths and kicks her feet when she sees him.”
Through word of mouth and social media, Elsie has the support of well more than a village, and the family has found financial aid through a GoFundMe page created on their behalf as well as a gun raffle and local businesses passing on portions of sales to help with hospital bills and gas money.
As noted above, a particularly popular event kicked off on April 11 in the form of Running for Elsie’s Heart, a 5K race at the Clay County Recreation Park. Organized by family member Dixie “Madison” Denton, people showed up in droves both to participate and cheer on runners from the sidelines. Many sported the pink shirts sold to also help raise funds for the West family.
Some visitors drove from as far as Athens and Franklin to offer their support after finding out about Elsie’s story. One runner, who hadn’t run in a few months, pushed through with faith, noting that she “felt the presence of the Lord,” echoing the Wests’ beliefs.
“It’s good to know that there’s still good people out there that believe in the power of prayer and believe in Jesus and His healing,” Denton said, with Colton West agreeing that “seeing everyone come together is a blessing.”
And while donations are appreciated, the West family primarily asks for prayer. It’s worth noting that, as of the morning of the race, Elsie was doing very well.
“We really ask the community to pray for our baby’s heart,” Caitlyn requested. “Keep her in your prayers for years to come.”
