By EMMA BARTLETT
When Debbie Quaglietta’s newborn daughter, Alyssa, was 13 days old, she knew something wasn’t right; Alyssa was gray in the face and didn’t look herself. …
By EMMA BARTLETT
When Debbie Quaglietta’s newborn daughter, Alyssa, was 13 days old, she knew something wasn’t right; Alyssa was gray in the face and didn’t look herself. Thinking she had a cold, Debbie brought her to the doctor.
The doctor tested her pulse ox levels and found that they were low.
“They double checked everything and said ‘this child is cardiac,’ and my mom was completely shocked because you don’t hear that every day – especially with a newborn,” said Alyssa, now 20, recounting what her mom told her.
13-day-old Alyssa was rushed to the emergency room where Hasbro Children’s Hospital’s Pediatric Cardiologist Doctor James Ziegler waited at the doors.
Ziegler, who joined Hasbro’s pediatric cardiology division in 1995, served as the division’s director from 2001 through 2010. His clinical interests included all aspects of pediatric cardiology, with special emphasis on preventive cardiology and exercise physiology, and he is board certified in pediatric cardiology and board eligible in general pediatrics and pediatric intensive care.
“Ever since that day, he’s been the one to take care of me with my heart,” Alyssa said.
Alyssa was diagnosed with a rare heart defect known as Hypoplastic Left Heart Syndrome. With this condition, the left side of the heart is underdeveloped and can’t effectively pump blood to the body. Treatment includes a three-stage open heart surgery in which Alyssa completed before age five at Boston Children’s Hospital, thanks to a collaboration between the two hospitals. Today, she is missing a left ventricle and has yearly check-ins with Ziegler, and said that thankfully everything is healthy.
However, last year there was something unique about her visit to Ziegler.
Alyssa said during her 2021 yearly visit, Ziegler asked about her hobbies and she mentioned liking music. He asked if she was any good, to which Alyssa replied she didn’t know. Ziegler then looked at Debbie who said Alyssa was pretty good.
“You learn to trust parents because usually it’s true,” said Ziegler.
He mentioned he had a small band called Kate and Co. which he did for fun with his daughter Kate. He said the band might be a good fit for Alyssa.
Ziegler and Kate facetimed Alyssa and they jived right away. Alyssa had several practices at Ziegler’s house in North Kingstown and joined them at the 2021 Wickford Art Fest. Ziegler said Alyssa did well even though the audience had 50 to 100 people in it at any given time; Debbie added that singing helped Alyssa with her anxiety.
Since the art fest, the band has occasionally done gigs, with their most recent performance at Hasbro Children’s Hospital’s Healthy Kids Day on June 18.
Organized by Pediatrician Doctor Celeste Corcoran, the event engaged patients and community members in fun activities while educating them on health. Healthy Kids Day included representatives from SNAP-Ed, WIC and United Health and hosted a free farmers market for families to pick up produce.
There were food demonstrations where parents could learn how to make healthy snacks and Corcoran hoped participants realized that doctors are not just interested in caring for them when they are sick, but in maintaining their overall health. Corcoran would like to make Healthy Kids Day an annual endeavor.
Alyssa, Ziegler, Kate and guitarist Rich Pearce provided music for Saturday’s three-hour event. Alyssa and Kate have a similar range and will harmonize on songs; they choose music by artist, not genre, and will sing songs by Echo Smith, Miley Cyrus and Taylor Swift.
“To go from where we were 20 years ago to now is not something that you think is going to happen, and I hope to show other families who are going through what we were going through 20 years ago that things can get better and things can change,” Alyssa said.
Debbie said Ziegler invited several families with Fontan babies (which are what babies with Alyssa’s condition are nicknamed) to Healthy Kids Day. She wished she had a family 20 years ago to tell her not to worry as much as she did because things could turn out really well.
“People are up there [in Hasbro] right now crying or upset because their baby was born ill, but it doesn’t have to be a bad ending or sad story,” Debbie said.
Debbie said it’s about giving hope to families for the future who are struggling and wondering if their child is going to make it through the next week or year. She also acknowledged Ziegler and the impact he’s had.
“He’s not just a doctor or cardiologist, he’s a great dad and great man,” Debbie said. “I don’t know how he fits it all in. He wrote a book, he has a band, he saves kids’ lives everyday; he does so much in the community to help people.”
Ziegler said some physicians are afraid to get to know their patients’ families and referenced Director, Division of Children’s Integrative Therapies, Pain Management and Supportive Care Angela Anderson who said ‘the coolest stuff you can do as a doctor is outside the hospital.’
Debbie said the relationship they’ve created has made bonds tighter and built trust; when it comes to anything medically, Debbie won’t do anything until she has Ziegler’s go-ahead.
“Trust goes a long way,” Debbie said.
Additionally, Ziegler said as a dad it’s emotional when playing music with his daughter because when it’s going well it’s hard to focus because he wants to listen to her – he said the same goes for Alyssa and mentioned that at last year’s performance at the Wickford Art Fest, he people had tears in their eyes when she sang.
Ziegler said while the band was originally named Kate and Co. The band currently doesn’t have a name but was thinking of renaming it to KA and Co.
Alyssa graduated from online high school in 2019. She lives in Western Cranston and has a part time job at a shake shop and started her own dog sitting business. In September, Alyssa will go to Boston Children’s Hospital for a catheterization to check on her heart – this is a preventative measure that will occur every 10 years to make sure everything is functioning correctly.
Alyssa said she’s looking forward to doing more with the band; their next stop is to play at this year’s Wickford Art Fest this July.
No comments on this item Please log in to comment by clicking here