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.
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. …
Heart failure in children is a sneaky condition. The symptoms can be subtle, and the situation often worsens quite quickly. That was the case for Alina Siman. Though Alina, now 8, was born with congenital heart disease, her parents thought she had escaped the complications of her condition.
Alina was born in Miami, Florida after a fetal echocardiogram diagnosed her with a coarctation of the aorta (a narrowing of the aorta) and a ventricular septal defect (a hole between the walls of the heart’s lower pumping chambers). She had surgery soon after she was born to correct her heart’s anatomy and for a few years, she seemed to be progressing just fine. However, Alina’s list of medications kept getting longer. When she started to develop arrhythmias, or irregular heartbeats, her doctors were in disagreement about the optimal medication and treatment plan.
The difference in opinions made Alina’s parents uncomfortable, and they decided to look for a second opinion. They researched online and found that Boston Children’s Hospital was and still is the #1 Hospital in the U.S. for Cardiology and Heart Surgery. In February 2011, the International Office arranged for Alina to see Dr. Frank Cecchin, an electrophysiologist. After seeing her, Cecchin knew that Alina’s condition was more than arrhythmia and he summoned the Heart Failure/Heart Transplant Team. Dr. Kevin Daly, Dr. Christopher Almond, and Dr. Elizabeth Blume all saw Alina that day. “We didn’t know how serious her condition until she was seen by four doctors in one day,” says Mary, Alina’s mother. “We thought, ‘Why the Heart Failure/Transplant Team? She doesn’t need a transplant!’” …