Access to Records Gives Family Confidence in Son's Care

On September 30th, 2009, Breck Gamel (pictured above with sons Bennett and Oliver) gave birth to her second child, a boy named Bennett. It was immediately obvious that something was wrong. Bennett was very sick and struggling to breathe. He was rushed into surgery and within hours of his birth, diagnosed with meconium peritonitis: his colon had ruptured in the womb, causing the meconium (an infant’s first feces) to become thickened and fill his abdomen.

For Bennett, meconium peritonitis was the first sign of cystic fibrosis (CF), a genetic disorder that that causes a buildup of mucus in the lungs, pancreas and other organs. Bennett was tested for the progressive chronic disease and only a week after he was born was diagnosed with CF. As Breck recalls, their family “was immediately chained to the healthcare system.”

Bennett Gamel after birth

Bennett in the hospital after his birth

Right from the start, managing Bennett’s healthcare was a daunting task. Breck remembers, “I was going through a trauma. I had just given birth and my child was in surgery. And then I was dealing with a newborn baby.” As Bennett was growing and changing, so were his symptoms and, as a result, the care he required. It was no small task to keep track of Bennett’s medications, treatments, and ongoing appointments.

Bennett’s care requires multiple health providers: pediatricians, GI doctors, therapists, surgeons) in several hospital systems (Breck’s family lives out-of-town of two of the hospital systems) help manage his symptoms as they arise. Before Breck found PicnicHealth, she was overwhelmed by the responsibility of having to collect and organize all of Bennett’s medical records.

Breck recalls feeling like she was holding Bennett’s healthcare together: “I was at the center of the spokes of his medical care. In many ways, I was the only one who had a complete picture of his health. I was the only one who was consciously aware of what all his different doctors were saying. And before PicnicHealth, I was the only one who didn’t have easy access to at least some of his medical records.” Breck collected Bennett’s records in a notebook, but the pages and pages of information were too dense to be easily understood or interpreted.

"I was the only one who had a complete picture of [my son's] health." click to tweet

Breck first heard about PicnicHealth on Twitter and immediately signed up. She describes herself as “immensely grateful” to now have complete access to an understandable timeline of Bennett’s medical history. “I often pull up his timeline when we visit new doctors. Doctors sometimes don’t have all of the patient’s records. PicnicHealth allows you to be faster than the current system.”

Having complete access to an easy-to-read version of her son’s medical records has given Breck new confidence as a mother of a child with a chronic condition. She is no longer worried about remembering detailed aftercare recommendations from different doctors. She can easily look up the name and dosage of specific medications Bennett used to take. She can study his records on her own time and thereby fully understand his doctors’ recommendations, and she can go back and reevaluate how his symptoms have progressed or improved.

Breck can also look at every X-Ray and CT scan that has been taken over the course of her son’s life. “I love having his images readily available. I’m able to pay attention to small changes in, for example, the cloudiness in his chest X-Rays.” Bennett’s PicnicHealth timeline allows Breck to continue learning about her son’s condition and easily share his medical records with her husband and her father, who is a physician.

Today, Bennett is six years old and is thriving, despite cystic fibrosis. Breck regularly uses Bennett’s PicnicHealth timeline to make decisions in her son’s care. She recommends PicnicHealth to others who might benefit, particularly to those managing chronic diseases and those with conditions that have not been given a clear diagnosis. Breck says, “There are so many benefits of PicnicHealth. I don’t know what I would do without it.”