Stories about: Experience Journal

Experience Journals: Grateful for the families at Boston Children’s Hospital

Danny Deitz, above with his parents, is a heart transplant patient of Dr. Kevin Daly and Dr. Elizabeth Blume

The Experience Journals Project shares the stories of kids, teens, and health care providers at Boston Children’s Hospital. This project features the collective wisdom of over 250 families and 150 health care professionals.


While each Journal has a different topic, every Journal includes providers who are grateful for the chance to work with the amazing children and families at Boston Children’s Hospital. Here are some of their experiences, in their own words:

Thank you

I think probably the most challenging and the most rewarding thing in this job is taking care of these incredible families. Every day I learn something new about parenting from these parents and about perseverance from these kids. The biggest challenges are the biggest rewards, because they go hand in hand, and it’s such an honor to be part of their journey.

Elizabeth Blume, MD, Heart Transplant Program medical director, Transplant Journal

This job is one that challenges you to be a better person every day. It really makes you take a different perspective on things. The kids and the families are so inspiring for what they go through, what they want to do to help others, the connection they feel with their community of other transplant patients and with people in general: I think that’s an extremely rewarding part of it. Obviously it’s challenging work, just the nature of it, and you have to be prepared for some sad days when you’re in this career, but it’s also very much about celebrating life while you’re here. That’s a great thing.

Kristine McKenna, PhD, psychologist, Transplant Journal

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Experience Journal: Self-cathing around friends and at school

self-cathing-experience-journalClean intermittent catheterization (CIC), sometimes called self-cathing, involves emptying the bladder using a thin tube called a catheter when children and adolescents are unable to empty their bladders completely on their own. Some of the reasons children and adolescents might need to self-catheterize are if they were born with abnormal anatomy, had an infection that affected their bladder function or suffered damage to the nerves connecting the bladder to the spinal cord and then to the brain.

The Boston Children’s Hospital Department of Urology and the Department of Psychiatry created the Self-Cathing Experience Journal. This journal includes stories from children, young adults and parents who represent the collective wisdom of families who have experience with self-cathing. Here are some of their stories, in their own words.

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Experience Journal: Growing up with inflammatory bowel disease (IBD)

back_to_school_with_ibdRoughly 1.4 million Americans suffer from inflammatory bowel disease (IBD), which refers to conditions that cause inflammation of the intestinal tract. Children with IBD may suffer from abdominal pain, cramping, blood in the stools and diarrhea. Early signs may include fever, fatigue and weight loss.

exprience-journal-logo-5 IBD presents in two main forms: ulcerative colitis and Crohn’s disease. While both are lifelong conditions, they can often be treated effectively with regular medication and diet management, surgical care and psychological support.

The IBD Experience Journal, created by the Boston Children’s Hospital Inflammatory Bowel Disease Center and the  Department of Psychiatry, includes stories and experiences from children, young adults and parents to represent the collective wisdom of families living with IBD. Here are some of their stories, in their own words.

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Experience Journal: Growing up with hearing loss

baseball_shutterstock v2__109556990In the U.S., roughly two to three out of every 1,000 children are born deaf or hard of hearing. This may launch families into unfamiliar territory as more than 90 percent of parents of deaf and hard of hearing children are not deaf or hard of hearing.

Some parents may have never met a deaf or hard of hearing person. As they begin the journey of raising their child, they may feel unfamiliar with the effects of hearing loss on acquiring language, communicating effectively with others, achieving academically and developing positive self images. There are a number of informed perspectives, resources, interventions, medical treatments and assistive technologies that can help children with hearing loss lead successful and fulfilling lives.


The Hearing Loss Experience Journal, created by the Boston Children’s Hospital Deaf and Hard of Hearing Program and the Department of Psychiatry, includes stories and experiences from children, young adults and families and represents the collective wisdom of families living with pediatric hearing loss. Here are some of their stories about growing up with hearing loss, using hearing aids and cochlear implants and more, in their own words.

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