Giulianna's Story
Kimberly Rinaldi was two months pregnant when she first learned there was a chance that her baby might have Down syndrome.
“I received a mixed diagnosis with my prenatal screenings,” she says. Kimberly decided not to have an amniocentesis to determine if Giulianna had Down syndrome. After suffering a miscarriage with her first pregnancy, she was concerned with any possibility of risk from the test and chose to wait and see. “She was still my baby whether she had Down syndrome or not,” says Kimberly. On June 19, 2008, Giulianna was born. “The pediatrician placed her into my arms and asked me if at any point during my pregnancy did they mention Down syndrome to me?” she says, knowing the diagnosis. Giulianna had an echocardiogram to rule out any heart issues, which are common with Down syndrome, and it revealed that the hole under her heart was still open but was expected to close on its own within a few days. Kimberly was happy to have a healthy baby girl to take home to her two older sisters Eva and Sophia in New Jersey. “My husband Bob reassured me that Giulianna was going to like Fun Land and Storybook Land and ice cream – everything that her sisters loved,”she says.
All went well until Giulianna’s second month checkup. Kimberly thought she sounded congested; the pediatrician agreed and suggested they go to The Children’s Hospital of Philadelphia. There, Kimberly learned that Giulianna had both Patent Ductus Arteriosus (PDA) – as the artery above her heart failed to close shortly after birth – and a Ventricular Septal Defect (VSD), a significant hole between the lower ventricles of her heart. In October, Giulianna underwent her first cardiac catheterization to close the PDA, which was successful.However, the VSD was still affecting Giulianna, and other complications developed, including a virus that left her hospitalized for several days as well as a rare arteriovenous fistula that required surgery. Giulianna also needed to have a feeding tube inserted. “Her heart was working overtime,” says Kimberly.“She fatigued easily while she ate, and fell below the growth curve.” Open heart surgery to correct the VSD began to look more likely. “It was always out there as an option,” Kimberly says. “They thought with weight gain, time, and medicine that the hole would close.”
On December 7, 2009, Giulianna was admitted to CHOP for open heart surgery, weighing just 17 pounds at 18 months old. During this time, the Rinaldis found refuge in the Ronald McDonald Family Room on the cardiac floor. “I practically lived in there,” Kimberly says. “I was so lucky to have the
benefit of being on the floor with her. As a mother, I did not want to leave her side.” However, the Family Room was a place to take a much-needed break just down the hall from Giulianna. “The Family Room is like a resort,” she says. “It is a getaway place where you can find comfort, get a hot meal or a cup of coffee, or go online and do research or keep in touch. You can keep some sanity while still being so close to your child and not having to leave the hospital. It is a huge relief and made a scary time much easier.”
Since the surgery, Giulianna has thrived. “She really took off,” says Kimberly. “She will go and sit at and play the piano. She will play with her sisters, like she never had the surgery at all. I think having the two older sisters has helped her a lot.” Giulianna’s courage throughout her first two years has also inspired Kimberly, a sculptor, to design a piece of jewelry, in collaboration with designer Steven Lagos of Lagos Jewelry, in Giulianna's honor. Giulianna’s Heart pendant is now being sold to benefit the Philadelphia Ronald McDonald House, with the goal of promoting Down syndrome and cardiac awareness Kimberly and her husband Bob also support the House through Bob’s position at Jacobs Music, and have been able to facilitate the donation of two pianos for our families. “I felt like I needed to do something to give back no matter how big or small it was,” says Kimberly.
Support Us
The Heart of the House is our Volunteer program. The volunteers serve in many ways, helping to make the House a comfortable and supportive place for our families. The caring volunteers of the PRMH make this House a home.
