While Danielle was still pregnant, she learned that her unborn baby boy was already fighting an uphill battle. Not only did genetic testing reveal that the baby would be born with Down syndrome, but scans also revealed that he had a congenital heart defect. Having the heart defect meant that the baby would require open heart surgery soon after his birth—if he could even survive that long. Danielle and her husband, Torrie, were preparing themselves for the worst. Their baby boy, who they decided to name Jackson, might not even make it into the world at all.
But baby Jackson had other plans. He is a fighter and a survivor. And according to Danielle, Jackson is determined to change the lives of his family and even his community, perhaps unknowingly, and definitely for the better.
A special baby boy arrives
Despite the odds against him, Jackson was born in May of 2018. Danielle shared that she and Torrie weren’t very concerned about Jackson having Down syndrome; they feel that his extra chromosome just makes him extra special. They were extremely worried about his heart issues, though, and Danielle’s doctors referred Jackson to the Heart Institute at UPMC Children’s Hospital of Pittsburgh. Danielle shares, “We’re so grateful that we eventually met Dr. Victor Morell. He and his team are simply amazing, and they saved Jackson’s life more than once. We owe them everything.”
The heart team successfully performed Jackson’s first open heart surgery when he was just 14 days old, but baby Jackson still had a long and bumpy medical journey ahead of him. He had other health complications in addition to his heart defect, including breathing and nutrition problems. He endured several more procedures, inpatient stays, and surgeries in his first year of life. He was even put on full life support at one point.
The family never knew from one moment to the next if Jackson would survive because he had so many medical issues, but Danielle says that they put their complete and total trust in the clinicians caring for him at UPMC Children’s. She and Torrie were fully involved in the decision-making process for Jackson’s treatment plan—something they didn’t expect. “We were grateful that the heart team always included us in every step of Jackson’s care. Instead of just telling us their plan, they asked us our opinion as his parents, and took what we said into careful consideration,” she adds.
A community comes together
Through it all, sweet little Jackson remained happy and smiling. He met milestones that Danielle and Torrie were told he might never achieve, like walking on his own just after his first birthday. Although Jackson will require ongoing care and follow up appointments at UPMC Children’s for the foreseeable future, he is now 4 years old and doing well. He enjoys T-ball, swimming, and dancing around the house with his older siblings and his dad.
Danielle thinks that what is truly special about Jackson is how much he has changed the lives of so many people in the short time since he was born. “Jackson has taught our family how to be more patient, more kind, and more caring towards others. He’s taught us to be grateful and to give back. And now those traits have spread through our whole community,” Danielle says.
Her friends and neighbors have come together to support each other in times of need, especially through the pandemic. Danielle says that she has a tight-knit network of friends and families now, and it’s all thanks to her sharing Jackson’s journey and reaching out to others for help. She also met other patient families facing pediatric heart disease while Jackson was hospitalized at UPMC Children’s, and she’s still in touch with many of them today. Danielle believes that families supporting one another is what got her through some very tough times. That, in addition to her smiling baby boy.
Danielle sums it all up by sharing, “We are grateful for every day that Jackson is alive, and we just want to thank the people who make that possible, especially the heart team at UPMC Children’s. They prove that when doctors and families work together, kids like Jackson can thrive. Children’s means hope for families like ours.”