In September 2015, Simsbury, Connecticut, high school junior Danny Deitz had a heart transplant.
After a few months of rest and recovery, he’s now back at school, returned to the gym and is spending quality time with his friends. Danny shares what he’s learned throughout his experience with cardiomyopathy and heart failure.
All in all, life’s been really great. I went back to school four weeks ago. Getting back into the work was a bit tough at first — I had been doing one hour of tutoring a day, and now I’m in school six hours a day! But I’m getting used to it. I’m basically doing everything I used to, and it’s nice to be back in that routine.
It got kind of boring sitting at home all the time while my friends were at school, but I had friends over on the weekends. And it made me appreciate the little things more. Being at home with family — that’s really important. …
One in 100 babies is born with some form of congenital heart defect (CHD). Sometimes the issue is minor and doesn’t cause serious problems. Other times, the heart can’t function properly and needs immediate, invasive surgery. As kids with CHD grow up, they learn their condition will follow them for life and need continued attention. Every CHD heart is unique, but some experiences are universal, and kids and families can help support one another through challenging times.
The Heart Experience Journal, created by the Department of Psychiatry and the Heart Center, represents the “collective wisdom” of patients and families coping with pediatric heart disease. The following excerpts were taken from conversations with patients and families during their child’s inpatient stay for a heart-related issue. Read more first-hand advice from families at the Experience Journals. …
My husband Mike and I will never forget the feeling of excitement we had the morning we were finding out if we were having a boy or a girl. It seemed like we had to wait an eternity, wondering whether we’d hear the words “it’s a boy” or “it’s a girl.”
Finally, the time came — and our nurse let us know we were expecting a BOY! After screeching from excitement and smiling from ear to ear, we quickly realized something was wrong.
Our doctor had noticed the left side of our son’s heart was noticeably smaller than the right, a sign that he had a condition called hypoplastic left heart syndrome, or HLHS. With HLHS, the left side of the heart is underdeveloped and unable to properly pump blood.
That day, our world immediately changed. Our minds were racing in every direction, and it seemed like we were literally living in a nightmare. We had plans of shopping for baby clothes and celebrating over a nice lunch, and instead we were meeting with doctors all afternoon and uncontrollably crying. It was this night we named our son “Vincent” (Vinny for short), which means “to conquer.” We needed a strong name for a boy who needed to overcome so much.
Finding out your child has congenital heart disease (CHD) can send you on an emotional roller coaster. “You can’t help but think, is this my fault? What did I do wrong?” says Jessica Nigrelli, whose daughter Avery was diagnosed with CHD when she was 16 months old.
When Avery was a baby, she had an on-again, off-again heart murmur that was checked every three months. When the murmur persisted at 16 months, her primary care doctor recommended she see a cardiologist from Boston Children’s Hospital. At the Heart Center’s outpatient clinic in Waltham, Dr. Susan Saleeb discovered Avery’s atrial septal defect (ASD). An ASD is a hole in the wall that separates the heart’s upper two chambers, the left and right atria.
The diagnosis shocked Jessica and spurred a great deal of anxiety. “Avery appeared healthy. Looking at her, you would never know anything was wrong,” Jessica says. The word ‘defect’ just sets off a million bells and alarms in your head. Processing that took some time.” …