As a varsity football and lacrosse player, 17-year-old Simsbury, Connecticut native Danny Deitz was used to pushing the limits of his physical endurance. No doubt the competitive spirit was passed down to him from his father, Terry Deitz, a retired U.S. Navy pilot and two-time Survivor contestant.
But last spring, Danny became concerned about a mysterious decline in his health. Plays that were once second nature became strenuous, and he started to struggle with breathing during activity. Eventually, Danny felt weak just walking up the stairs of his high school. He was in heart failure — and about to face the toughest summer of his life.
Unbeknownst to Danny and his family, he had a rare genetic form of cardiomyopathy, a disease of the heart muscle. With his family’s support and care from an expert team of cardiologists, nurses and cardiac surgeons at the Boston Children’s Heart Center, Danny was able to regain strength, return to his community and receive a heart transplant.
Learn more about the Cardiomyopathy Program at Boston Children’s Hospital.
Learn how this journey has inspired Danny and his family to help others with cardiomyopathy and advance heart disease research.
Often you hear from parents that they want their child to be the best, the standout star — the child who rises above the rest and sets herself apart from the group as unique or special. But when you have a child who is often told NO, who has been set apart from a group because she is considered too fragile, too sick, too something … your hopes are different.
No child wants to be left out— an onlooker, an outlier — as many of our children are in their everyday worlds. For a parent, seeing your child cast aside due to something completely out of her control is often heartbreaking.
When Ligia Jordao, a nurse who worked for many years with the Heart Center’s Electrophysiology Program, told my husband Mark and me about Pacemaker/ICD Camp, we were skeptical. I couldn’t imagine sending our Grace off for a weekend by herself without us. …
The moment Alina Siman first opened her eyes after her heart transplant is a moment her parents will never, ever forget. “She saw her dad standing over her,” recalls her mother, Mary, “and she said, ‘Papa, Papa.’”
Alina had been through quite an ordeal over that past year. Born with a congenital heart defect that was surgically corrected in infancy, Alina had been growing and developing normally until the spring of her third year.
The active toddler’s seemingly strong heart began to weaken, and the situation rapidly became worse. Mary brought Alina to the Heart Center at Boston Children’s Hospital, where she was treated by the Heart Failure/Heart Transplant team and received a new heart after nearly five months of waiting and building strength on the transplant list. She remained a patient on the hospital’s 8th floor during her wait.
Saying goodbye to the team of doctors, nurses and other hospital staff who had cared for Alina for so long was bittersweet for the Siman family. “It was a mix of emotions,” Mary explains. “After so much time there, we felt more than ready to leave. But at the same time, leaving the hospital and all the great people who took care of Alina was kind of sad. We try to visit the floor where she stayed at least once a year.”
Mary says it took no time at all for Alina to regain her strength after her heart transplant and get back to all of her favorite activities: “She had energy to dance, sing, go to the playground and have fun!”
From a medical standpoint, though, re-adjusting to life at home in Honduras was a bit more gradual. “We took things one step at a time,” says Mary. “For a while, she still needed a feeding tube and weekly checkups at the local hospital. We had to keep away from crowded places so she could stay healthy. But Alina was just so happy to be at home! No more IVs, beeping sounds or interruptions during sleep.” Little by little, Alina started to eat more on her own. In two months, she was completely weaned from the feeding tube. …
When four-year-old Alina Siman was waiting for a heart transplant in 2011, she had to stay at Boston Children’s Hospital for a total of five months. Alina had suffered from severe heart failure and was building strength on a Berlin Heart, a mechanical device that temporarily takes over the heart’s pumping functions.
Alina received her new heart on February 28, 2012. Her mother, Mary Jane Siman, shares what she learned about staying positive, active and entertained while you’re stuck in the hospital for a long time.
“These few tips were created with the help of the entire team that worked with Alina: doctors, nurses, social workers and all the great people around her,” says Mary. …