Growing up means blazing your own trail. For the past 13 years, Connecticut Children’s has been watching Penny Ringrose do just that.
Penny, who has Down syndrome, has been coming to Connecticut Children’s since the day she was born, when she was rushed to our nationally-ranked neonatal intensive care unit (NICU) for a severe heart defect.
Ultrasounds during pregnancy hadn’t detected any health issues, so it wasn’t until that day that Penny’s parents, Maureen and Scott, found out about her heart condition and Down syndrome.
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“I remember I said to my mom, ‘I don’t know if I can do this,’” says Scott. “She said, ‘You will. You’ll learn how.’ And then, when we got to Connecticut Children’s, we were reassured. The nurses, the doctors, everyone was helping to educate us about Penny’s heart condition and Down syndrome. I could see that it was going to be easier. Not easy, but easier. I was so thankful for that.”
“She knows Penny best”
Connecticut Children’s is the only health system in the state that’s 100% dedicated to children – and our Heart Center includes care that starts before kids are even born, continuing through adulthood. Penny’s care began with life-saving surgery: At 6 days old, she had the first of several staged surgeries to repair a missing pulmonary artery, led by Cardiovascular Surgery Clinical Director Dennis M. Mello, MD.
From then on, Maureen and Scott have brought Penny to Connecticut Children’s for all of her care – from a second heart surgery, at 6 months old; to ear tube surgeries with otolaryngologist Nicole Murray, MD, through the Ear, Nose & Throat Down Syndrome Clinic, to regular chest X-rays with Non-Invasive Imaging Director Olga Toro-Salazar, MD. She’ll continue to see Dr. Toro-Salazar when she’s an adult through Connecticut Children’s nationally-recognized Adult Congenital Heart Disease Services program.
“Dr. Toro-Salazar has known Penny since Penny was about 6 hours old – she’s up there on that list of people who know Penny best,” says Maureen. “We’ll have phone call conversations at 8 o’clock at night. I’m not afraid to reach out to her with the MyChart app. Just to have that relationship is amazing. I’m really looking forward to continuing our care with her when Penny’s an adult.”
“We got an update every hour”
Penny had her third open-heart surgery with Dr. Mello this past June, a planned procedure to replace a conduit with a larger version. Maureen and Scott followed along on the Ease mobile app.
“We got an update every hour or so during her surgery. It was a great comfort,” says Maureen. She shared screenshots with family and friends, and a large online network of families of children with Down syndrome.
Through that Down syndrome network, Maureen knows parents who bring their kids to health systems across the nation. She tells them that, in her family’s experience, Connecticut Children’s is the best.
“Through all the procedures and all the stays at Connecticut Children’s over the years, I can’t think of one bad experience,” says Maureen. “Everyone goes out of their way to make Penny feel special, and make her feel like this is a safe environment. From registration to the pre-op team, anesthesiologists, nurses and doctors, we receive the best care. That’s the experience we get every single time.”
“She’s a force”
Altogether, Penny has received care from the divisions of Anesthesiology, Audiology, Cardiology & Cardiac Surgery, Cancer & Blood Disorders, Ear, Nose & Throat, Endocrinology and Gastroenterology – plus the NICU and PICU. She’s made friends all along the way, at procedures, in-person appointments and Video Visits.
This team of Connecticut Children’s clinicians have helped celebrate the major milestones in Penny’s life, like when she started walking at 2 years old, and when she first jumped at age 3 and a half. They are smiling beside her in pictures through the years: There’s Penny from a few years ago with pediatric anesthesiologist Michael Archambault, MD, who dressed her stuffed bear in full personal protective equipment; there’s Penny from a couple months ago, cuddled up to nurse Alexa Picciuto, CCRN, BSN, who got Penny on the road to recovery after her recent open-heart surgery.
They’ve watched Penny work hard to become a brave, independent teenager who always tries her best in her eighth grade classes. She is affectionate, unapologetic about what she likes and doesn’t, and has perfect comedic timing. She has a way of commanding every room she’s in.
“She’s a force,” says Scott.
She’s showing everyone what it means to blaze your own trail. Connecticut Children’s can’t wait to see where it leads next.