Canton tot preparing for third heart surgery
Clifford Ayres and his daughter, Lily, 2, pose for a photo in their Canton Township home. Lily has hypoplastic left heart syndrome and Moebius syndrome, and continues to deal with challenging health issues that accompany both.
Lily Ayres uses a “Go Talk” device with some help from her father, Clifford. Whenever Lily presses on one of the squares on the device, a recorded response explains what the picture represents.
Lily Ayres has relied on her favorite pacifier to get her through her many health challenges.
Lily Ayres was hooked up to many tubes after she was born May 13, 2015.
Lily Ayres celebated her second birthday a week early with chocolate cake.
Clifford Ayres says his daughter, Lily, is not a people person.
And who can blame her?
The chubby, blond-haired 2-year-old has spent much of her young life with doctors, nurses and therapists – and that is not about to change anytime soon.
Lily was diagnosed in utero with hypoplastic left heart syndrome, a congenital defect that affects a number of structures on the left side of her heart, preventing normal blood flow from her heart to her body.
“Her pumping chamber has never grown,” Ayres said.
On Thursday, Lily had a heart catheterization in preparation for what will be the last of a three-part surgical procedure designed to create normal blood flow in and out of her heart.
Lily was 2 days old on May 15, 2015, when she had her first heart procedure. It involved placing a shunt between the pulmonary arteries and the aorta to supply blood to the lungs.
At 6 months, Lily had her second surgery. This time, the shunt to the pulmonary arteries was disconnected, and the right pulmonary artery was connected directly to the vein that brings deoxygenated blood from the upper part of the body to the heart, resulting in half of the deoxygenated blood going to the lungs without going through the ventricle.
“Basically, they are rewiring her heart,” Ayres said.
When Lily is older, she may need a heart transplant.
In addition to her heart defect, Lily has Moebius syndrome, a rare neurological disorder that leaves her unable to smile, frown, blink or move her eyes from side to side. The inside of her cheeks, Ayres said, are connected to her gums, and since she cannot swallow, she is fed through a feeding tube in her abdomen.
“She’s like a little Hostess cupcake; the middle part of her brain is filled with water,” said Ayres, a single father who does not work so that he can care full time for his daughter in their Canton Township home.
When she is a little older, Lily also may have surgery to separate her cheeks from her gums.
To help with Lily’s medical and travel expenses, Ayres’ niece, Ashley Garner, has set up a GoFundMe account, https://www.gofundme.com/lillys-open-heart-surgery. The goal is to raise $5,000.
Lily has physical therapy twice a week, occupational and speech therapy each once a week, and a home-health nurse visits twice a month for a wellness check.
In speech therapy, Lily is learning sign language, although she isn’t precise yet in some of her signing.
“As long as I know what she’s talking about … She can do it to a point,” said Ayres, noting that, he too, is learning sign language so he can better communicate with his daughter.
Lily also is unable to crawl or walk on her own. She does have a pint-sized adult walker that she can use to get around, but she prefers to either sit on the floor and scooch around on her bottom, or be held and walked around the house by her father, playfully pulling on his thick, curly beard “all day long.”
“In the last two weeks, she started sitting on her own,” Ayres said.
Ayres doesn’t like to take Lily too many places because of her fragile health, so his family helps him as much as they can, going grocery shopping, running other errands or simply coming by the house, he said, to style Lily’s hair, noting “That’s one thing Daddy can’t do.”
“We just try to do the best we can,” Ayres said.