Hailey's Heart

“Hailey is our tough, little bug,” said Tracie, Hailey’s mom. “Nothing is going to stop her—she is going to keep fighting.”
Tracie was thrilled when she became pregnant with Hailey. Her anticipation grew with every appointment; she was excited to meet her daughter. There were no complications or indications that anything was out of the ordinary or wrong.
That changed quickly.
Hailey was born with a heart condition—coarctation of the aorta. It is a narrowing of the large blood vessel that delivers oxygen-rich blood to the body. It forces the heart to work much harder. And it is both rare and life-threatening.
But coarctation of the aorta wasn’t the only challenge Hailey faced. She struggled with pneumonia, ventricular septal defect, tracheostomy, feeding tube, and more. Her lungs are not fully developed and she deals with scoliosis. She also suffers from Noonan syndrome, which impacts her growth and hormones.
After traveling to South Dakota and Michigan for medical care…Hailey ended up at Mayo Clinic in Rochester.
“Mayo Clinic is a wonderful place,” Tracie said. “They care for their patients so well and provide a very personal experience.
“It’s where we needed to be.”
The family has visited Rochester and Mayo Clinic for their other two children as well. Their son was born two months early and required a stay in the neonatal intensive care unit (NICU), while their other daughter had a negative reaction to an antibiotic and required hospitalization. Both fully recovered and are doing very well.
“Mayo is our saving grace,” said Tracie.
Hailey has visited Rochester and Mayo Clinic more than 20 times for appointments, treatments, and surgeries. For 16 of those visits and a total of 171 nights…Tracie has stayed at the Ronald McDonald House of Rochester. She knew a little bit about Ronald McDonald Houses, but she learned a lot more on her first visit.
A few family members have stayed at the House occasionally, but Tracie said she has stayed by herself the majority of visits. Even Hailey has been inpatient more often than not.
“The House is such a blessing,” said Tracie. “It provides comfort and security. Because Hailey is often inpatient…I am staying at the House alone. But I don’t feel alone.
“When I leave the hospital…it feels like I am going home.”
The times Hailey has stayed at the House, she has found so much joy and happiness. She formed a very special bond with the Family Activity Coordinator and is always excited for mailbox “treasures,” which are donated by friends of the House.
“Activities and mailbox items are things for her to look forward to on our trips,” Tracie said. “And she rarely keeps anything; she gives it to her brother and sister or her friends.
“She has such a big heart.”
Other people with big hearts are volunteers. The House had 1,620 volunteers for 19,088 hours in 2019. Volunteers share time, expertise, and compassion with children and families and are truly the heart of the House.
“House volunteers are helpful, sweet, welcoming…wonderful,” said Tracie. “So many people care for us—care for my daughter.
“The House is our home and the volunteers and staff are our family.”
Because Hailey needs frequent care, they have also experienced the disappointment of being on the waiting list and not receiving a room at the House.
The Ronald McDonald House expanded from 42 guest rooms to 70 in 2019. Thousands of donors supported the expansion through the capital campaign and made the expanded House a reality. The House—which is now the largest in the state of Minnesota and one of the largest in the country and the world—hopes its added capacity will greatly reduce wait times for children and families.
“The expansion means so much,” said Tracie. “As a family who needs constant medical care…it is a significant financial and emotional burden. The donors make it possible for us to be in Rochester at Mayo Clinic at the Ronald McDonald House.
“Their donations are saving her life.”
While Hailey is doing very well, her future is still uncertain. As Tracie described: heart conditions are tricky. But the family takes it one day at a time, enjoys every moment together, and hopes for a full and complete life.
“It’s a different world when you have a sick child,” Tracie said. “But Hailey is incredible strong and brave.”