Paisley, the daughter of Megan Curtis, of New London, was born in October 2017 with several physical anomalies. Many of her organs were in the center of her body instead of in the normal position and her heart and liver were transversed (flipped).
She doesn’t have a spleen, which makes her more likely to get infections and struggle to recover from them, and has a mass on her thyroid that affects her growth — causing her to weigh only 16 pounds at 16 months old. Only one chamber of Paisley’s heart was functioning at birth, but not correctly, so she was intubated shortly after she was born to help circulate blood to her lungs and other organs.
When Paisley was about a week old, she had her first heart surgery at the Cleveland Clinic; her internal organs were moved into their proper positions at that time as well. A second surgery on her heart took place about two weeks later and she stayed in the neonatal intensive care unit until mid-December 2017. Paisley came home with a nasogastric tube to feed her; within a few weeks she was weaned from the feeding tube and was drinking from a bottle only.
Curtis and her daughter became involved with Early Intervention (EI) through the Huron County Board of Developmental Disabilities in February 2018.
“Paisley was unable to stay awake for the full 30 minutes during our first few visits and had blue lips and fingertips because her heart wasn’t pumping enough oxygen through her body,” EI Developmental specialist Amy Hurst said.
“As time went on and EI service coordinator Sara Lalonde and I continued to work with the family, she proved herself to be a little fighter, progressing almost normally for her age although some milestones were a bit delayed. Paisley’s doctors had told Megan they really didn’t know what her prognosis would be, so everyone was amazed.”
Curtis stayed at home with Paisley most of the time during the winter months to protect her from exposure to germs that could put more strain on her tiny body, but did start to venture out with her on occasion in the spring of 2018.
That summer, her medical team at the Cleveland Clinic started discussing the next heart surgery she’d need. Initially, Paisley’s surgeon thought the repair they’d be able to make would only be for one chamber of her heart — a procedure that wouldn’t address all of the problems, and that often fails over time.
After consultation with her cardiologist, they created a printed 3D model of a two-chamber heart for the baby The model enabled them to spend hours looking at and handling an exact replica of Paisley’s heart and to know exactly where to make each incision during the complex surgery to rebuild the left side of her heart and create connections to pump blood to the rest of her body.
During that time, Paisley was continuing to progress despite her body’s constant struggle for oxygen — sitting up, army crawling and finger-feeding herself.
On Sept. 22, 2018, she had the heart surgery at the Cleveland Clinic. Curtis said doctors who had flown in from all over the world to a conference there attended a presentation about Paisley because it was such a unique procedure.
“They said she was the youngest child to ever have this surgery,” the mother said. “Her surgeon and cardiologist were really the only ones on board with attempting it; the other doctors just didn’t think it could work. And, honestly, they still don’t know why it did. She’s just a miracle baby.”
After one minor setback, in which her surgeon had to open her again to remove blood clots, Paisley was able to be home for her first birthday party in October.
“Paisley had no skill regression from her time in the hospital and started using single words, crawling, standing up and walking with a push toy,” Hurst said. “She continues to increase her vocabulary and is very social and easygoing.”
She has been honored on the Wall of Little Heroes at Cleveland Clinic Children’s Hospital. Also, hospital representatives came to the family’s home in New London on Feb. 8 with a film crew for their social media accounts with the story to be picked up by Cleveland news stations.
Paisley comes by her strong spirit naturally; 21-year-old single mother is finishing her emergency medical technician certification, which she’ll have this month. ]
Curtis also is training to run a half-marathon in the spring. She works at The Learning Farm in Amherst with people who have developmental disabilities; the business is owned by she and her aunt has worked there for years.
She also is starting the Pray for Paisley Foundation, which will focus on helping young disabled women with self-esteem issues to build better body images and wants to partner with University Hospitals to put AEDs (automated external defibrillators) in local schools. Curtis said she also would like to use the foundation to help sponsor meals for families with sick children who stay at the Ronald McDonald House in Cleveland.
Curtis credits her parents, her extended family, her church and the New London community for the great support they’ve provided to her and her daughter.
“You don’t really know how many people you have on your side until something like this happens,” she said.
As for Early Intervention’s contribution to the family’s support, Hurst said “what we do is primarily coaching; we play with Paisley, but it’s an ongoing conversation with Megan about what she’s doing and how to keep progressing.”
“It’s the parents who run with what we suggest that have the greatest success. We help them to access resources, become aware of what’s out there, offer guidance and encouragement; we’re part of their lives as someone else who will listen and help.”
Curtis agreed that the guidance from EI staff members has been important to her family.
“I think it really helps to put our goals in order; knowing where the milestones should be, especially for me as a first-time mom, and someone with a child who has serious medical issues,” she said.
“Megan is a great mom,” Hurst said. “She has so many ideas and a vision for the future — not just for her daughter, but for hersel, and for other young women out there who may be struggling to find their way in the world. She wants Paisley to live as full a life as possible, and we have every confidence that she’s going to make that happen.”